Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Dear Julissa, We had a similar problem when my son was about the same age. He developed an aversion to eating when he started having a seizure every time he ate. It was baffling and so frustrating. He always loved his milk, and could drink without triggering a seizure, so I added cream to it. I gave him lots of avocado, and added flaxseed and olive oil to all of his purees. At the time, " the experts " threatened me (or him, I guess) with a feeding tube if I couldn't get his weight up. I was quite upset by that at the time as I thought it was unnecessary (I don't think they immediately start talking about feeding tubes for underweight neurotypical babies). Anyway, that phase passed, he is quite hefty now, and though he doesn't love food, he eats plenty. I did get fairly aggressive with food after his seizures finally stopped during eating (a few months later). Good luck, keep trying, and let me know if I can help in any way. All the best, > > I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 You have great ideas! I am glad to hear your son is walking. Drake is still in stage 2 foods. He is only 9 months. He swallows well, but I need to be careful. I am going to slowly thickening his foods. I am also altering his daily schedule. He takes one 4-5 hr nap, but the past two days I have tried 2 naps. Allowing him more feedings. Before i was not worried since he was gaining weight. I was always told to let a baby sleep.. I hope all this works. In this world of light cooking I have forgotten how to cook fattening foods. Julissa Sent from my iPad > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > If I think of anything else I'll email you. > > > > To: polymicrogyria > From: auburn715@... > Date: Fri, 20 Jan 2012 10:15:17 -0500 > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > Thanks, Julissa > > > > Sent from my iPad > > > > > > > >> > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > >> > >> > >> > >> CC: polymicrogyria > >> To: polymicrogyria > >> From: auburn715@... > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > >> Subject: Re: Baby in 3% weight > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > >> > >> > >> > >> Sent from my iPad > >> > >> > >> > >> > >> > >> > >> > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > >> > >>> > >> > >>> Some children (such as mine) have hormone deficiencies. > >> > >>> > >> > >>> Donna > >> > >>> > >> > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > >> > >>> Sent: Thursday, January 19, 2012 4:07 PM > >> > >>> To: polymicrogyria > >> > >>> Cc: polymicrogyria > >> > >>> Subject: Baby in 3% weight > >> > >>> > >> > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > >> > >>> > >> > >>> Sent from my iPad > >> > >>> > >> > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > >> > >>> > >> > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > >> > >>>> Hope this helps. Cheers > >> > >>>> Kat > >> > >>>> > >> > >>>> -original message- > >> > >>>> Subject: The normal development of my baby > >> > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > >> > >>>> Date: 20/01/2012 7:37 am > >> > >>>> > >> > >>>> Dear friends, > >> > >>>> > >> > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > >> > >>>> Thank u:) > >> > >>>> Lina > >> > >>>> > >> > >>>> > >> > >>> > >> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 LOL! I also gained weight, be careful not to pick off your little ones leftovers. To: polymicrogyria From: auburn715@... Date: Fri, 20 Jan 2012 13:46:01 -0500 Subject: Re: Baby in 3% weight You have great ideas! I am glad to hear your son is walking. Drake is still in stage 2 foods. He is only 9 months. He swallows well, but I need to be careful. I am going to slowly thickening his foods. I am also altering his daily schedule. He takes one 4-5 hr nap, but the past two days I have tried 2 naps. Allowing him more feedings. Before i was not worried since he was gaining weight. I was always told to let a baby sleep.. I hope all this works. In this world of light cooking I have forgotten how to cook fattening foods. Julissa Sent from my iPad > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > If I think of anything else I'll email you. > > > > To: polymicrogyria > From: auburn715@... > Date: Fri, 20 Jan 2012 10:15:17 -0500 > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > Thanks, Julissa > > > > Sent from my iPad > > > > > > > >> > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > >> > >> > >> > >> CC: polymicrogyria > >> To: polymicrogyria > >> From: auburn715@... > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > >> Subject: Re: Baby in 3% weight > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > >> > >> > >> > >> Sent from my iPad > >> > >> > >> > >> > >> > >> > >> > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > >> > >>> > >> > >>> Some children (such as mine) have hormone deficiencies. > >> > >>> > >> > >>> Donna > >> > >>> > >> > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > >> > >>> Sent: Thursday, January 19, 2012 4:07 PM > >> > >>> To: polymicrogyria > >> > >>> Cc: polymicrogyria > >> > >>> Subject: Baby in 3% weight > >> > >>> > >> > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > >> > >>> > >> > >>> Sent from my iPad > >> > >>> > >> > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > >> > >>> > >> > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > >> > >>>> Hope this helps. Cheers > >> > >>>> Kat > >> > >>>> > >> > >>>> -original message- > >> > >>>> Subject: The normal development of my baby > >> > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > >> > >>>> Date: 20/01/2012 7:37 am > >> > >>>> > >> > >>>> Dear friends, > >> > >>>> > >> > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > >> > >>>> Thank u:) > >> > >>>> Lina > >> > >>>> > >> > >>>> > >> > >>> > >> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Here is the article. I just made vanilla. http://mangobounce.blogspot.com/2007/06/pediasure-vs-chocolate-ice-cream.html To: polymicrogyria From: auburn715@... Date: Fri, 20 Jan 2012 13:48:14 -0500 Subject: Re: Baby in 3% weight Have you tried the toddler formulas? My oldest never had a problem with regular milk, but I have a friend that gives it to her son and he likes it. Not sure what's in it. Julissa Sent from my iPad > My docs wanted me to switch my son from formula to pediasure when he turned a year. I still haven't because I don't love that fact that pediasure is sugary and most likely gmo beet sugar. I'm a little weird about his foods and tend to err on the side of caution with a lot of these things. Anyway, my question is what kind of alternatives to pediasure are there? I've tried a nutritional drink called orgain but he doesn't love it. I'm still giving him formula fortified to 40 cals. I wish I would have kept pumping breast milk for him. Anyone know why the docs think its so important to transition from formula to pediasure? > > “I am learning all the time. The tombstone will be my diploma.” > — Eartha Kitt > > > > > > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > > > If I think of anything else I'll email you. > > > > > > > > To: polymicrogyria > > From: auburn715@... > > Date: Fri, 20 Jan 2012 10:15:17 -0500 > > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > > > > > Thanks, Julissa > > > > > > > > Sent from my iPad > > > > > > > > > > > > > > > >> > > > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > > > >> > > > >> > > > >> > > > >> CC: polymicrogyria > > > >> To: polymicrogyria > > > >> From: auburn715@... > > > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > > > >> Subject: Re: Baby in 3% weight > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > > > >> > > > >> > > > >> > > > >> Sent from my iPad > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > > > >> > > > >>> > > > >> > > > >>> Some children (such as mine) have hormone deficiencies. > > > >> > > > >>> > > > >> > > > >>> Donna > > > >> > > > >>> > > > >> > > > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > > > >> > > > >>> Sent: Thursday, January 19, 2012 4:07 PM > > > >> > > > >>> To: polymicrogyria > > > >> > > > >>> Cc: polymicrogyria > > > >> > > > >>> Subject: Baby in 3% weight > > > >> > > > >>> > > > >> > > > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > > > >> > > > >>> > > > >> > > > >>> Sent from my iPad > > > >> > > > >>> > > > >> > > > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > > > >> > > > >>> > > > >> > > > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > > > >> > > > >>>> Hope this helps. Cheers > > > >> > > > >>>> Kat > > > >> > > > >>>> > > > >> > > > >>>> -original message- > > > >> > > > >>>> Subject: The normal development of my baby > > > >> > > > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > > > >> > > > >>>> Date: 20/01/2012 7:37 am > > > >> > > > >>>> > > > >> > > > >>>> Dear friends, > > > >> > > > >>>> > > > >> > > > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > > > >> > > > >>>> Thank u:) > > > >> > > > >>>> Lina > > > >> > > > >>>> > > > >> > > > >>>> > > > >> > > > >>> > > > >> > > > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 My granddaughter Lindsey has been taking Pediasure orally for going on 10 years. I can't answer your question as to why Pediasure, but I'd guess for weight gain and for all the vitamins it contains. She still takes it from her bottle. Keeps her very healthy. She is rarely sick. She is though, starting to refuse the bottle for anyone other than her mother so this is not a good thing since her mom works 3 days/week atwhich time the sitter (me or her dad) are in a " pickle. "  I think a feeding tube is inevitable in the near future. Blessings, Bonnie (grandmother to Lindsey 10 years old with PMG) Bonnie ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Friday, January 20, 2012 10:02 AM Subject: Re: Baby in 3% weight  My docs wanted me to switch my son from formula to pediasure when he turned a year. I still haven't because I don't love that fact that pediasure is sugary and most likely gmo beet sugar. I'm a little weird about his foods and tend to err on the side of caution with a lot of these things. Anyway, my question is what kind of alternatives to pediasure are there? I've tried a nutritional drink called orgain but he doesn't love it. I'm still giving him formula fortified to 40 cals. I wish I would have kept pumping breast milk for him. Anyone know why the docs think its so important to transition from formula to pediasure? “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > If I think of anything else I'll email you. > > > > To: polymicrogyria > From: auburn715@... > Date: Fri, 20 Jan 2012 10:15:17 -0500 > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > Thanks, Julissa > > > > Sent from my iPad > > > > > > > >> > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > >> > >> > >> > >> CC: polymicrogyria > >> To: polymicrogyria > >> From: auburn715@... > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > >> Subject: Re: Baby in 3% weight > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > >> > >> > >> > >> Sent from my iPad > >> > >> > >> > >> > >> > >> > >> > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > >> > >>> > >> > >>> Some children (such as mine) have hormone deficiencies. > >> > >>> > >> > >>> Donna > >> > >>> > >> > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > >> > >>> Sent: Thursday, January 19, 2012 4:07 PM > >> > >>> To: polymicrogyria > >> > >>> Cc: polymicrogyria > >> > >>> Subject: Baby in 3% weight > >> > >>> > >> > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > >> > >>> > >> > >>> Sent from my iPad > >> > >>> > >> > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > >> > >>> > >> > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > >> > >>>> Hope this helps. Cheers > >> > >>>> Kat > >> > >>>> > >> > >>>> -original message- > >> > >>>> Subject: The normal development of my baby > >> > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > >> > >>>> Date: 20/01/2012 7:37 am > >> > >>>> > >> > >>>> Dear friends, > >> > >>>> > >> > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > >> > >>>> Thank u:) > >> > >>>> Lina > >> > >>>> > >> > >>>> > >> > >>> > >> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 I was wondering if most children with pmg have feeding tubes? If so, are they a temporary solution or permanent. Julissa Sent from my iPad On Jan 20, 2012, at 11:37 PM, " Zagrovich@ yahoo.com " wrote: > My granddaughter Lindsey has been taking Pediasure orally for going on 10 years. I can't answer your question as to why Pediasure, but I'd guess for weight gain and for all the vitamins it contains. She still takes it from her bottle. Keeps her very healthy. She is rarely sick. She is though, starting to refuse the bottle for anyone other than her mother so this is not a good thing since her mom works 3 days/week atwhich time the sitter (me or her dad) are in a " pickle. " I think a feeding tube is inevitable in the near future. > Blessings, > Bonnie (grandmother to Lindsey 10 years old with PMG) > > Bonnie > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Friday, January 20, 2012 10:02 AM > Subject: Re: Baby in 3% weight > > > > My docs wanted me to switch my son from formula to pediasure when he turned a year. I still haven't because I don't love that fact that pediasure is sugary and most likely gmo beet sugar. I'm a little weird about his foods and tend to err on the side of caution with a lot of these things. Anyway, my question is what kind of alternatives to pediasure are there? I've tried a nutritional drink called orgain but he doesn't love it. I'm still giving him formula fortified to 40 cals. I wish I would have kept pumping breast milk for him. Anyone know why the docs think its so important to transition from formula to pediasure? > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > > > If I think of anything else I'll email you. > > > > > > > > To: polymicrogyria > > From: auburn715@... > > Date: Fri, 20 Jan 2012 10:15:17 -0500 > > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > > > > > Thanks, Julissa > > > > > > > > Sent from my iPad > > > > > > > > > > > > > > > >> > > > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > > > >> > > > >> > > > >> > > > >> CC: polymicrogyria > > > >> To: polymicrogyria > > > >> From: auburn715@... > > > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > > > >> Subject: Re: Baby in 3% weight > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > > > >> > > > >> > > > >> > > > >> Sent from my iPad > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > > > >> > > > >>> > > > >> > > > >>> Some children (such as mine) have hormone deficiencies. > > > >> > > > >>> > > > >> > > > >>> Donna > > > >> > > > >>> > > > >> > > > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > > > >> > > > >>> Sent: Thursday, January 19, 2012 4:07 PM > > > >> > > > >>> To: polymicrogyria > > > >> > > > >>> Cc: polymicrogyria > > > >> > > > >>> Subject: Baby in 3% weight > > > >> > > > >>> > > > >> > > > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > > > >> > > > >>> > > > >> > > > >>> Sent from my iPad > > > >> > > > >>> > > > >> > > > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > > > >> > > > >>> > > > >> > > > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > > > >> > > > >>>> Hope this helps. Cheers > > > >> > > > >>>> Kat > > > >> > > > >>>> > > > >> > > > >>>> -original message- > > > >> > > > >>>> Subject: The normal development of my baby > > > >> > > > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > > > >> > > > >>>> Date: 20/01/2012 7:37 am > > > >> > > > >>>> > > > >> > > > >>>> Dear friends, > > > >> > > > >>>> > > > >> > > > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > > > >> > > > >>>> Thank u:) > > > >> > > > >>>> Lina > > > >> > > > >>>> > > > >> > > > >>>> > > > >> > > > >>> > > > >> > > > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 Hi there, I'm similar to you I've been a member for a while and often read the conversations but don't ask very much. I'm not sure if its relevant but my daughter Jenna (16months) has PMG and had surgery in Dec to reduce her seizures (daily). After the surgery she stopped drinking, wouldn't suck a bottle and is obsessed with her hands in her mouth. -m not sure what happened but I think one her of seizures has caused some damage to her sucking function (v unlikley surgery as the didn't remove that bit). I started mixing Thick and Easy a thickening agent into her milk and fluid. First I spoon fed it to her then our Speach therapist gave me a flexi cup and I reduced the thickener and started with that. It has been great! Jenna has severe cognitive delays (which explains the mouthing her hands) and she's always only had open sounds. Using the cup has not only helped her drinking and weight but its also helped her to learn to put her lips together. Now she makes 'm' sounds. Katy x > > > > > > > My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > > > > Hope this helps. Cheers > > > > Kat > > > > > > > > -original message- > > > > Subject: The normal development of my baby > > > > From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > > > > Date: 20/01/2012 7:37 am > > > > > > > > Dear friends, > > > > > > > > I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > > > > Thank u:) > > > > Lina > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 For us the feeding tube is permanent. It didn't start out that way. He was five when we realized he was aspirating and out of nessacaty we got it. It was always a struggle to keep weight on him so even though it upset me a little part of me was relieved. The feeding and swallow therapy along with vital stim has helped him so much. He pretty much maintains his weight without the help of the tube but its been such a lifesaver when he is sick. The only meal I consistently feed him through the button is breakfast. He is never hungry early in the morning and I feel so much better sending him off with a full stomach. He also gets less infections and when is sick recovers quickly. About 6 months into having the tube I told my husband even if he is clear to drink thin liquids and is not aspirating at all I don't want to get rid of it, to my shock he agreed. It doesn't hurt him or bother him in the least and it doesn't hinder his eating orally. He has made great strides since the tube academically and physically that I believe wouldn't have otherwise. I am able to give him supplements he would never consume. To: polymicrogyria From: auburn715@... Date: Sat, 21 Jan 2012 07:47:00 -0500 Subject: Re: Baby in 3% weight I was wondering if most children with pmg have feeding tubes? If so, are they a temporary solution or permanent. Julissa Sent from my iPad On Jan 20, 2012, at 11:37 PM, " Zagrovich@ yahoo.com " wrote: > My granddaughter Lindsey has been taking Pediasure orally for going on 10 years. I can't answer your question as to why Pediasure, but I'd guess for weight gain and for all the vitamins it contains. She still takes it from her bottle. Keeps her very healthy. She is rarely sick. She is though, starting to refuse the bottle for anyone other than her mother so this is not a good thing since her mom works 3 days/week atwhich time the sitter (me or her dad) are in a " pickle. " I think a feeding tube is inevitable in the near future. > Blessings, > Bonnie (grandmother to Lindsey 10 years old with PMG) > > Bonnie > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Friday, January 20, 2012 10:02 AM > Subject: Re: Baby in 3% weight > > > > My docs wanted me to switch my son from formula to pediasure when he turned a year. I still haven't because I don't love that fact that pediasure is sugary and most likely gmo beet sugar. I'm a little weird about his foods and tend to err on the side of caution with a lot of these things. Anyway, my question is what kind of alternatives to pediasure are there? I've tried a nutritional drink called orgain but he doesn't love it. I'm still giving him formula fortified to 40 cals. I wish I would have kept pumping breast milk for him. Anyone know why the docs think its so important to transition from formula to pediasure? > > “I am learning all the time. The tombstone will be my diploma.” > — Eartha Kitt > > > > > > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > > > If I think of anything else I'll email you. > > > > > > > > To: polymicrogyria > > From: auburn715@... > > Date: Fri, 20 Jan 2012 10:15:17 -0500 > > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > > > > > Thanks, Julissa > > > > > > > > Sent from my iPad > > > > > > > > > > > > > > > >> > > > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > > > >> > > > >> > > > >> > > > >> CC: polymicrogyria > > > >> To: polymicrogyria > > > >> From: auburn715@... > > > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > > > >> Subject: Re: Baby in 3% weight > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > > > >> > > > >> > > > >> > > > >> Sent from my iPad > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > > > >> > > > >>> > > > >> > > > >>> Some children (such as mine) have hormone deficiencies. > > > >> > > > >>> > > > >> > > > >>> Donna > > > >> > > > >>> > > > >> > > > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > > > >> > > > >>> Sent: Thursday, January 19, 2012 4:07 PM > > > >> > > > >>> To: polymicrogyria > > > >> > > > >>> Cc: polymicrogyria > > > >> > > > >>> Subject: Baby in 3% weight > > > >> > > > >>> > > > >> > > > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > > > >> > > > >>> > > > >> > > > >>> Sent from my iPad > > > >> > > > >>> > > > >> > > > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > > > >> > > > >>> > > > >> > > > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > > > >> > > > >>>> Hope this helps. Cheers > > > >> > > > >>>> Kat > > > >> > > > >>>> > > > >> > > > >>>> -original message- > > > >> > > > >>>> Subject: The normal development of my baby > > > >> > > > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > > > >> > > > >>>> Date: 20/01/2012 7:37 am > > > >> > > > >>>> > > > >> > > > >>>> Dear friends, > > > >> > > > >>>> > > > >> > > > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > > > >> > > > >>>> Thank u:) > > > >> > > > >>>> Lina > > > >> > > > >>>> > > > >> > > > >>>> > > > >> > > > >>> > > > >> > > > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 My little girl is right sided PMG (left hemi CP) and Dr. Dobyns said by looking at her MRI that he was very surprised that she did not have swallowing problems. She did have chewing problems like she only used her front teeth to eat and the food build up in front. The SLP would worked with pretzel sticks(crunchy stim) and pop sickles(cold stim) and sour candy spray (sour stim)moving food from side to side. She also had me do facial massage daily. Maybe she had me do those things to wake her muscles in her mouth and the quiet muscles just did not extend down her throat too. She has had the constipation issues too but we also did massage and diet. I wonder where swallowing normally is located in the brain or is it all motor strip muscles problem?Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 You're welcome! He is 6. To: polymicrogyria From: auburn715@... Date: Sat, 21 Jan 2012 12:01:55 -0500 Subject: Re: Baby in 3% weight Thanks for the information. It gives me a positive perspective. How old is your son? Julissa Sent from my iPad > > For us the feeding tube is permanent. It didn't start out that way. He was five when we realized he was aspirating and out of nessacaty we got it. It was always a struggle to keep weight on him so even though it upset me a little part of me was relieved. The feeding and swallow therapy along with vital stim has helped him so much. He pretty much maintains his weight without the help of the tube but its been such a lifesaver when he is sick. The only meal I consistently feed him through the button is breakfast. He is never hungry early in the morning and I feel so much better sending him off with a full stomach. He also gets less infections and when is sick recovers quickly. About 6 months into having the tube I told my husband even if he is clear to drink thin liquids and is not aspirating at all I don't want to get rid of it, to my shock he agreed. It doesn't hurt him or bother him in the least and it doesn't hinder his eating orally. He has made great strides since the tube academically and physically that I believe wouldn't have otherwise. I am able to give him supplements he would never consume. > > To: polymicrogyria > From: auburn715@... > Date: Sat, 21 Jan 2012 07:47:00 -0500 > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I was wondering if most children with pmg have feeding tubes? If so, are they a temporary solution or permanent. Julissa > > > > Sent from my iPad > > > > On Jan 20, 2012, at 11:37 PM, " Zagrovich@ yahoo.com " wrote: > > > >> My granddaughter Lindsey has been taking Pediasure orally for going on 10 years. I can't answer your question as to why Pediasure, but I'd guess for weight gain and for all the vitamins it contains. She still takes it from her bottle. Keeps her very healthy. She is rarely sick. She is though, starting to refuse the bottle for anyone other than her mother so this is not a good thing since her mom works 3 days/week atwhich time the sitter (me or her dad) are in a " pickle. " I think a feeding tube is inevitable in the near future. > >> Blessings, > >> Bonnie (grandmother to Lindsey 10 years old with PMG) > >> > >> Bonnie > >> > >> ________________________________ > >> > >> To: " polymicrogyria " <polymicrogyria > > >> Sent: Friday, January 20, 2012 10:02 AM > >> Subject: Re: Baby in 3% weight > >> > >> > >> > >> My docs wanted me to switch my son from formula to pediasure when he turned a year. I still haven't because I don't love that fact that pediasure is sugary and most likely gmo beet sugar. I'm a little weird about his foods and tend to err on the side of caution with a lot of these things. Anyway, my question is what kind of alternatives to pediasure are there? I've tried a nutritional drink called orgain but he doesn't love it. I'm still giving him formula fortified to 40 cals. I wish I would have kept pumping breast milk for him. Anyone know why the docs think its so important to transition from formula to pediasure? > >> > >> �I am learning all the time. The tombstone will be my diploma.� > >> � Eartha Kitt > >> > >> > >> > >>> > >>> Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > >>> > >>> If I think of anything else I'll email you. > >>> > >>> > >>> > >>> To: polymicrogyria > >>> From: auburn715@... > >>> Date: Fri, 20 Jan 2012 10:15:17 -0500 > >>> Subject: Re: Baby in 3% weight > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> , > >>> > >>> > >>> > >>> Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > >>> > >>> > >>> > >>> Thanks, Julissa > >>> > >>> > >>> > >>> Sent from my iPad > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>>> > >>> > >>>> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> CC: polymicrogyria > >>> > >>>> To: polymicrogyria > >>> > >>>> From: auburn715@... > >>> > >>>> Date: Thu, 19 Jan 2012 21:42:49 -0500 > >>> > >>>> Subject: Re: Baby in 3% weight > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> Sent from my iPad > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>> > >>> > >>>>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>> Some children (such as mine) have hormone deficiencies. > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>> Donna > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > >>> > >>>> > >>> > >>>>> Sent: Thursday, January 19, 2012 4:07 PM > >>> > >>>> > >>> > >>>>> To: polymicrogyria > >>> > >>>> > >>> > >>>>> Cc: polymicrogyria > >>> > >>>> > >>> > >>>>> Subject: Baby in 3% weight > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>> Sent from my iPad > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > >>> > >>>> > >>> > >>>>>> Hope this helps. Cheers > >>> > >>>> > >>> > >>>>>> Kat > >>> > >>>> > >>> > >>>>>> > >>> > >>>> > >>> > >>>>>> -original message- > >>> > >>>> > >>> > >>>>>> Subject: The normal development of my baby > >>> > >>>> > >>> > >>>>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > >>> > >>>> > >>> > >>>>>> Date: 20/01/2012 7:37 am > >>> > >>>> > >>> > >>>>>> > >>> > >>>> > >>> > >>>>>> Dear friends, > >>> > >>>> > >>> > >>>>>> > >>> > >>>> > >>> > >>>>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > >>> > >>>> > >>> > >>>>>> Thank u:) > >>> > >>>> > >>> > >>>>>> Lina > >>> > >>>> > >>> > >>>>>> > >>> > >>>> > >>> > >>>>>> > >>> > >>>> > >>> > >>>>> > >>> > >>>> > >>> > >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 Hello, My son is 6 and is 36lbs and short for his age. But he eats like a horse and a feeding tube has never been mentioned. But my son is pretty active and normal other then left sided weakness. He talks, runs, and plays like most kids and dont let anything stop him. he was late to do this like other have said on here about their kids.just keep the course and see the special doctors. dont do things that are not needed for health. Amy my son is Julyan he is 6 and has digeorge syndrome and polymicrogyria ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Saturday, January 21, 2012 7:27 PM Subject: Re: Baby in 3% weight  Hi Julissa Siera had trouble with her weight at Drakes age, she was also under weight and they talked about a feeding tube, but it was not something I wanted her to have to have as she loves her food, so we worked hard to fatten her up, doing all the things mentioned on her, custard, avo, supplements, etc I also got up during the night to give her extra feeds/bottles. It sounds like you are doing all the right things, hope it helps to put some weight on. Kat ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Sunday, 22 January 2012 1:47 AM Subject: Re: Baby in 3% weight  I was wondering if most children with pmg have feeding tubes? If so, are they a temporary solution or permanent. Julissa Sent from my iPad On Jan 20, 2012, at 11:37 PM, " Zagrovich@ yahoo.com " wrote: > My granddaughter Lindsey has been taking Pediasure orally for going on 10 years. I can't answer your question as to why Pediasure, but I'd guess for weight gain and for all the vitamins it contains. She still takes it from her bottle. Keeps her very healthy. She is rarely sick. She is though, starting to refuse the bottle for anyone other than her mother so this is not a good thing since her mom works 3 days/week atwhich time the sitter (me or her dad) are in a " pickle. " I think a feeding tube is inevitable in the near future. > Blessings, > Bonnie (grandmother to Lindsey 10 years old with PMG) > > Bonnie > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Friday, January 20, 2012 10:02 AM > Subject: Re: Baby in 3% weight > > > > My docs wanted me to switch my son from formula to pediasure when he turned a year. I still haven't because I don't love that fact that pediasure is sugary and most likely gmo beet sugar. I'm a little weird about his foods and tend to err on the side of caution with a lot of these things. Anyway, my question is what kind of alternatives to pediasure are there? I've tried a nutritional drink called orgain but he doesn't love it. I'm still giving him formula fortified to 40 cals. I wish I would have kept pumping breast milk for him. Anyone know why the docs think its so important to transition from formula to pediasure? > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > > > If I think of anything else I'll email you. > > > > > > > > To: polymicrogyria > > From: auburn715@... > > Date: Fri, 20 Jan 2012 10:15:17 -0500 > > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > > > > > Thanks, Julissa > > > > > > > > Sent from my iPad > > > > > > > > > > > > > > > >> > > > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > > > >> > > > >> > > > >> > > > >> CC: polymicrogyria > > > >> To: polymicrogyria > > > >> From: auburn715@... > > > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > > > >> Subject: Re: Baby in 3% weight > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > > > >> > > > >> > > > >> > > > >> Sent from my iPad > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > > > >> > > > >>> > > > >> > > > >>> Some children (such as mine) have hormone deficiencies. > > > >> > > > >>> > > > >> > > > >>> Donna > > > >> > > > >>> > > > >> > > > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > > > >> > > > >>> Sent: Thursday, January 19, 2012 4:07 PM > > > >> > > > >>> To: polymicrogyria > > > >> > > > >>> Cc: polymicrogyria > > > >> > > > >>> Subject: Baby in 3% weight > > > >> > > > >>> > > > >> > > > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up.. I welcome any ideas. Julissa > > > >> > > > >>> > > > >> > > > >>> Sent from my iPad > > > >> > > > >>> > > > >> > > > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > > > >> > > > >>> > > > >> > > > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > > > >> > > > >>>> Hope this helps. Cheers > > > >> > > > >>>> Kat > > > >> > > > >>>> > > > >> > > > >>>> -original message- > > > >> > > > >>>> Subject: The normal development of my baby > > > >> > > > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > > > >> > > > >>>> Date: 20/01/2012 7:37 am > > > >> > > > >>>> > > > >> > > > >>>> Dear friends, > > > >> > > > >>>> > > > >> > > > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > > > >> > > > >>>> Thank u:) > > > >> > > > >>>> Lina > > > >> > > > >>>> > > > >> > > > >>>> > > > >> > > > >>> > > > >> > > > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2012 Report Share Posted January 21, 2012 Kat Thanks. I hope he fattens up too. My 2.5 yr old is also skinny, but still at 75% weight. I was the same way as a child. The past two days he has been eating and eating. He seems happier. Today, he drank 2.5 oz from his night bottle. He does not refuse the bottle. He wants to chew on it, so he ends up drinking some of it. So, I am going to keep giving it to him. It helps me see how much he is drinking and I can supplement. Thanks, Julissa Sent from my iPad > Hi Julissa > > Siera had trouble with her weight at Drakes age, she was also under weight and they talked about a feeding tube, but it was not something I wanted her to have to have as she loves her food, so we worked hard to fatten her up, doing all the things mentioned on her, custard, avo, supplements, etc I also got up during the night to give her extra feeds/bottles. It sounds like you are doing all the right things, hope it helps to put some weight on. > > Kat > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Sunday, 22 January 2012 1:47 AM > Subject: Re: Baby in 3% weight > > > > I was wondering if most children with pmg have feeding tubes? If so, are they a temporary solution or permanent. Julissa > > Sent from my iPad > > On Jan 20, 2012, at 11:37 PM, " Zagrovich@ yahoo.com " wrote: > > > My granddaughter Lindsey has been taking Pediasure orally for going on 10 years. I can't answer your question as to why Pediasure, but I'd guess for weight gain and for all the vitamins it contains. She still takes it from her bottle. Keeps her very healthy. She is rarely sick. She is though, starting to refuse the bottle for anyone other than her mother so this is not a good thing since her mom works 3 days/week atwhich time the sitter (me or her dad) are in a " pickle. " I think a feeding tube is inevitable in the near future. > > Blessings, > > Bonnie (grandmother to Lindsey 10 years old with PMG) > > > > Bonnie > > > > ________________________________ > > > > To: " polymicrogyria " <polymicrogyria > > > Sent: Friday, January 20, 2012 10:02 AM > > Subject: Re: Baby in 3% weight > > > > > > > > My docs wanted me to switch my son from formula to pediasure when he turned a year. I still haven't because I don't love that fact that pediasure is sugary and most likely gmo beet sugar. I'm a little weird about his foods and tend to err on the side of caution with a lot of these things. Anyway, my question is what kind of alternatives to pediasure are there? I've tried a nutritional drink called orgain but he doesn't love it. I'm still giving him formula fortified to 40 cals. I wish I would have kept pumping breast milk for him. Anyone know why the docs think its so important to transition from formula to pediasure? > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > > > > > > > > > Also, if he is able to eat you can cook pasta called pastina. Its tiny tiny pasta that takes about 1 min to cook. I would boil it in water drain it, add butter, crack an egg or two in it while the heat is on very low keep stirring until it cooks take off the heat and add grated cheese. My son used to choke on this but it works for a lot of kids and they usually love it. It just depends on how good he is able to swallow. My son is really affected orally but is walking with a walker. > > > > > > If I think of anything else I'll email you. > > > > > > > > > > > > To: polymicrogyria > > > From: auburn715@... > > > Date: Fri, 20 Jan 2012 10:15:17 -0500 > > > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > , > > > > > > > > > > > > Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? > > > > > > > > > > > > Thanks, Julissa > > > > > > > > > > > > Sent from my iPad > > > > > > > > > > > > > > > > > > > > > > > >> > > > > > >> If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > > > > > >> > > > > > >> > > > > > >> > > > > > >> CC: polymicrogyria > > > > > >> To: polymicrogyria > > > > > >> From: auburn715@... > > > > > >> Date: Thu, 19 Jan 2012 21:42:49 -0500 > > > > > >> Subject: Re: Baby in 3% weight > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > > > > > >> > > > > > >> > > > > > >> > > > > > >> Sent from my iPad > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >>> Request pediatric endocrinologist referral. Need growth hormone levels checked. > > > > > >> > > > > > >>> > > > > > >> > > > > > >>> Some children (such as mine) have hormone deficiencies. > > > > > >> > > > > > >>> > > > > > >> > > > > > >>> Donna > > > > > >> > > > > > >>> > > > > > >> > > > > > >>> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > > > > > >> > > > > > >>> Sent: Thursday, January 19, 2012 4:07 PM > > > > > >> > > > > > >>> To: polymicrogyria > > > > > >> > > > > > >>> Cc: polymicrogyria > > > > > >> > > > > > >>> Subject: Baby in 3% weight > > > > > >> > > > > > >>> > > > > > >> > > > > > >>> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up.. I welcome any ideas. Julissa > > > > > >> > > > > > >>> > > > > > >> > > > > > >>> Sent from my iPad > > > > > >> > > > > > >>> > > > > > >> > > > > > >>> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > > > > > >> > > > > > >>> > > > > > >> > > > > > >>>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > > > > > >> > > > > > >>>> Hope this helps. Cheers > > > > > >> > > > > > >>>> Kat > > > > > >> > > > > > >>>> > > > > > >> > > > > > >>>> -original message- > > > > > >> > > > > > >>>> Subject: The normal development of my baby > > > > > >> > > > > > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > > > > > >> > > > > > >>>> Date: 20/01/2012 7:37 am > > > > > >> > > > > > >>>> > > > > > >> > > > > > >>>> Dear friends, > > > > > >> > > > > > >>>> > > > > > >> > > > > > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > > > > > >> > > > > > >>>> Thank u:) > > > > > >> > > > > > >>>> Lina > > > > > >> > > > > > >>>> > > > > > >> > > > > > >>>> > > > > > >> > > > > > >>> > > > > > >> > > > > > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2012 Report Share Posted January 22, 2012 My madison is 4 years old and weighs 28 pounds, the doctors talked about a feeding tube but I would rather not do that. We are giving her food all the time like ice cream and lots of butter with her food. Sent via BlackBerry from T-Mobile The normal development of my baby > > > >> > > > >>>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > > > >> > > > >>>> Date: 20/01/2012 7:37 am > > > >> > > > >>>> > > > >> > > > >>>> Dear friends, > > > >> > > > >>>> > > > >> > > > >>>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > > > >> > > > >>>> Thank u:) > > > >> > > > >>>> Lina > > > >> > > > >>>> > > > >> > > > >>>> > > > >> > > > >>> > > > >> > > > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Hi, What a great suggestion! Any chance you can remember your custard recipe? I feed Pediasure and adding some calories would be helpful for my girl, too. I tried adding Duocal which is a calorie rich powder with no flavor but she knows when it is in her bottle and does not like it, at all. My little girl, a, is 2 yrs, BFPP and very bright. She can not sit unsupported...but getting there. I can't walk away because she may tip over, I surround her with pillows if I do walk away but she cannot get back to sitting on her own, yet. Its like a nickel on the table, if you move the table the niclel falls over....the the closest analogy. Her lower half is much stronger than her upper. We have a Mustang gait trainer and when she is in it she cruises all over the place. She opens cabinets, drawers and pulls toilet paper off the roll by the handful. When other kids come over she can chase them and they chase her, she has the best time in it...she laughs and plays...it allows her to be mobile. We do lots of therapy, she goes to school and has a 1:1 aide which allows her to interact with the class and activities. School has been fantastic for a and for me. She is with other typical 2 year olds and is learning the skills of a 2 year old, like turn taking but also learning about emotions and how to handle 'big emotions' (code for a tantrum or feeling sad when I leave the room or even mad) and I've learned how to recognize her emotions and acknowledge them with her when she feels sad or mad or frustrated. I've been following these boards for nearly a year and just wanted to add what I hope is encouragement. I love my little a sooo much. Karla Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 1/20/2012 9:20 am To: polymicrogyria Subject: RE: Baby in 3% weight Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 She sounds like she is doing wonderfully! That is great news! The custard recipe I used was actually to make ice cream. You can freeze it like I did if you have a ice cream maker and just melt what you need to add to her bottles. Or you can just keep in in the fridge. I'll look it up and send it to you. I have one suggestion since you said your daughter has a stronger lower body than upper. With my son it's the same and it is really more coordination kind of like linking his upper body to his lower body. Its almost like they are separate entities. Anyway, we used something called theratogs. It does just that, links the body to act like one. He did great when he had them on. To: polymicrogyria From: kjlondon@... Date: Thu, 2 Feb 2012 04:16:10 -0800 Subject: RE: Baby in 3% weight Hi, What a great suggestion! Any chance you can remember your custard recipe? I feed Pediasure and adding some calories would be helpful for my girl, too. I tried adding Duocal which is a calorie rich powder with no flavor but she knows when it is in her bottle and does not like it, at all. My little girl, a, is 2 yrs, BFPP and very bright. She can not sit unsupported...but getting there. I can't walk away because she may tip over, I surround her with pillows if I do walk away but she cannot get back to sitting on her own, yet. Its like a nickel on the table, if you move the table the niclel falls over....the the closest analogy. Her lower half is much stronger than her upper. We have a Mustang gait trainer and when she is in it she cruises all over the place. She opens cabinets, drawers and pulls toilet paper off the roll by the handful. When other kids come over she can chase them and they chase her, she has the best time in it...she laughs and plays...it allows her to be mobile. We do lots of therapy, she goes to school and has a 1:1 aide which allows her to interact with the class and activities. School has been fantastic for a and for me. She is with other typical 2 year olds and is learning the skills of a 2 year old, like turn taking but also learning about emotions and how to handle 'big emotions' (code for a tantrum or feeling sad when I leave the room or even mad) and I've learned how to recognize her emotions and acknowledge them with her when she feels sad or mad or frustrated. I've been following these boards for nearly a year and just wanted to add what I hope is encouragement. I love my little a sooo much. Karla Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 1/20/2012 9:20 am To: polymicrogyria Subject: RE: Baby in 3% weight Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 My son is the same way and his therapist said the same thing. He doesn't know how to connect them - he thinks they are separate. I'll definitely ask her about the Theratogs - awesome suggestion! polymicrogyria on Thursday, February 02, 2012 at 5:57 AM -0800 wrote: > >She sounds like she is doing wonderfully! That is great news! > >The custard recipe I used was actually to make ice cream. You can freeze it >like I did if you have a ice cream maker and just melt what you need to add to >her bottles. Or you can just keep in in the fridge. I'll look it up and send >it to you. > >I have one suggestion since you said your daughter has a stronger lower body >than upper. With my son it's the same and it is really more coordination kind >of like linking his upper body to his lower body. Its almost like they are >separate entities. Anyway, we used something called theratogs. It does just >that, links the body to act like one. He did great when he had them on. > >To: polymicrogyria >From: kjlondon@... >Date: Thu, 2 Feb 2012 04:16:10 -0800 >Subject: RE: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > >What a great suggestion! Any chance you can remember your custard recipe? I >feed Pediasure and adding some calories would be helpful for my girl, too. I >tried adding Duocal which is a calorie rich powder with no flavor but she >knows when it is in her bottle and does not like it, at all. > > > >My little girl, a, is 2 yrs, BFPP and very bright. She can not sit >unsupported...but getting there. I can't walk away because she may tip over, >I surround her with pillows if I do walk away but she cannot get back to >sitting on her own, yet. Its like a nickel on the table, if you move the >table the niclel falls over....the the closest analogy. > > > >Her lower half is much stronger than her upper. We have a Mustang gait trainer >and when she is in it she cruises all over the place. She opens cabinets, >drawers and pulls toilet paper off the roll by the handful. When other kids >come over she can chase them and they chase her, she has the best time in >it...she laughs and plays...it allows her to be mobile. > > > >We do lots of therapy, she goes to school and has a 1:1 aide which allows her >to interact with the class and activities. School has been fantastic for >a and for me. She is with other typical 2 year olds and is learning the >skills of a 2 year old, like turn taking but also learning about emotions and >how to handle 'big emotions' (code for a tantrum or feeling sad when I leave >the room or even mad) and I've learned how to recognize her emotions and >acknowledge them with her when she feels sad or mad or frustrated. > > > >I've been following these boards for nearly a year and just wanted to add what >I hope is encouragement. I love my little a sooo much. > > > >Karla > >Sent with Verizon Mobile Email > > > >---Original Message--- > >From: polymicrogyria > >Sent: 1/20/2012 9:20 am > >To: polymicrogyria > >Subject: RE: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 I buy it at the vitamin shoppe. I use Nordic Naturals and Dr. Sears. Nordic naturals comes in orange fish gummies that are delicious. Dr. Sears chews are disgusting but cost less. I give the fishies to my younger son and for my PMG kid I use the oil from Dr. Sears and just put it through his feeding tube. It is expensive but I think its worth it. Just make sure that whatever brand you buy it is 3rd party tested for impurities like lead or mercury. Also, they should make the findings of these tests readily available. I called one company and they would not release it so I returned it to the store after more research. I wouldn't buy cod liver oil because the liver has very high vitamin A. The fish oil source usually comes from anchovies and sardines. To: polymicrogyria From: kjlondon@... Date: Thu, 2 Feb 2012 09:08:58 -0800 Subject: RE: Baby in 3% weight What form is the fish oil in and how do you administer. Where can I buy? Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 2/2/2012 8:52 am To: polymicrogyria Subject: RE: Baby in 3% weight Fish oil is good for brain and eye development, also for the anti inflammatory effects for joints and even asthma. Since starting fish oil my son's psoriasis cleared up. He's more focused and gets less coughs. He has asthma and usually with every cold he ends up needing an oral steroid. He's only needed it once this year - for him that's good. To: polymicrogyria From: kjlondon@... Date: Thu, 2 Feb 2012 04:16:12 -0800 Subject: RE: Baby in 3% weight Why fish oil? Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 1/20/2012 10:23 am To: polymicrogyria Subject: RE: Baby in 3% weight I occasionally put flax seeds in my sons formula before I tube feed him but he has no problems with weight now and I give him fish oil everyday. Flax is a good idea to sprinkle on top of the food he eats cause its high in fat. Almost 5 grams in 2 tbls. To: polymicrogyria From: auburn715@... Date: Fri, 20 Jan 2012 10:15:17 -0500 Subject: Re: Baby in 3% weight , Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? Thanks, Julissa Sent from my iPad > > If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > > > > CC: polymicrogyria > To: polymicrogyria > From: auburn715@... > Date: Thu, 19 Jan 2012 21:42:49 -0500 > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > > > > Sent from my iPad > > > > > > > >> Request pediatric endocrinologist referral. Need growth hormone levels checked. > >> > >> Some children (such as mine) have hormone deficiencies. > >> > >> Donna > >> > >> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > >> Sent: Thursday, January 19, 2012 4:07 PM > >> To: polymicrogyria > >> Cc: polymicrogyria > >> Subject: Baby in 3% weight > >> > >> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > >> > >> Sent from my iPad > >> > >> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > >> > >>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > >>> Hope this helps. Cheers > >>> Kat > >>> > >>> -original message- > >>> Subject: The normal development of my baby > >>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > >>> Date: 20/01/2012 7:37 am > >>> > >>> Dear friends, > >>> > >>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > >>> Thank u:) > >>> Lina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2012 Report Share Posted February 2, 2012 Here are the websites: http://www.nordicnaturals.com/ http://www.drsearsfamilyessentials.com/omega-3-dha-fruit-chews-one-month-supply.\ html To: polymicrogyria From: kjlondon@... Date: Thu, 2 Feb 2012 09:08:58 -0800 Subject: RE: Baby in 3% weight What form is the fish oil in and how do you administer. Where can I buy? Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 2/2/2012 8:52 am To: polymicrogyria Subject: RE: Baby in 3% weight Fish oil is good for brain and eye development, also for the anti inflammatory effects for joints and even asthma. Since starting fish oil my son's psoriasis cleared up. He's more focused and gets less coughs. He has asthma and usually with every cold he ends up needing an oral steroid. He's only needed it once this year - for him that's good. To: polymicrogyria From: kjlondon@... Date: Thu, 2 Feb 2012 04:16:12 -0800 Subject: RE: Baby in 3% weight Why fish oil? Sent with Verizon Mobile Email ---Original Message--- From: polymicrogyria Sent: 1/20/2012 10:23 am To: polymicrogyria Subject: RE: Baby in 3% weight I occasionally put flax seeds in my sons formula before I tube feed him but he has no problems with weight now and I give him fish oil everyday. Flax is a good idea to sprinkle on top of the food he eats cause its high in fat. Almost 5 grams in 2 tbls. To: polymicrogyria From: auburn715@... Date: Fri, 20 Jan 2012 10:15:17 -0500 Subject: Re: Baby in 3% weight , Thanks. I have been giving him avocado, but the custard is a good idea. Has anyone tried flax? Thanks, Julissa Sent from my iPad > > If you can get him to eat try smashing an avocado in his food. When he is able to have more types of food and can tolerate milk and eggs you can make custards with heavy cream and egg yolks. I used to make vanilla custard kind of like making ice cream but always use the whole egg instead of just the yolk and then freeze it and melt what I needed to add to his bottle of milk along with poly vi sol with iron. He fattened up real fast. He did eventually stop liking it and the weight was always an issue. Good luck. > > > > CC: polymicrogyria > To: polymicrogyria > From: auburn715@... > Date: Thu, 19 Jan 2012 21:42:49 -0500 > Subject: Re: Baby in 3% weight > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Just took blood today. Could not get enough for all the test. Have to return on Tuesday. Thanks, Julissa > > > > Sent from my iPad > > > > > > > >> Request pediatric endocrinologist referral. Need growth hormone levels checked. > >> > >> Some children (such as mine) have hormone deficiencies. > >> > >> Donna > >> > >> From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of Julissa > >> Sent: Thursday, January 19, 2012 4:07 PM > >> To: polymicrogyria > >> Cc: polymicrogyria > >> Subject: Baby in 3% weight > >> > >> I am not new to the group, but have contributed very little. It has taken me a while to come to terms with my son's condition. My son is 9 months old. He almost has control of his head and today, for the first time, raised his hand and tried to push one of the buttons on his gym. It made me so happy! However, his 9 mo checkup did not go so well. In length he is in the 82%, but his head has not grown and only weighs 16lbs 12oz. I am trying everything, but he is teething and won't suck a bottle, he wants to bite everything and has been fighting a few bugs the past three weeks. Endo is running some tests. I have introduced more fats in his diet. Hope it helps. My goal right now is to fatten him up. I welcome any ideas. Julissa > >> > >> Sent from my iPad > >> > >> On Jan 19, 2012, at 3:41 PM, cutekat@... <mailto:cutekat%40xtra.co.nz> wrote: > >> > >>> My girl is 16mths and not doin any of that either, she only learnt to hold her head up about 4mths ago. Each child will write their own story, all u can do is keep up the therapy & encourage them & support them. We celebrate ech goal and set new smll goals our nex one is to sit up unassisted which we practice every day. > >>> Hope this helps. Cheers > >>> Kat > >>> > >>> -original message- > >>> Subject: The normal development of my baby > >>> From: Lina Kurdi <sweet.kurdi@... <mailto:sweet.kurdi%40yahoo.com> > > >>> Date: 20/01/2012 7:37 am > >>> > >>> Dear friends, > >>> > >>> I am concerning about my 15 months daughter is not walking yet or even standing. Also she didn't crawled yet!! Can somebody share his experience about this please? > >>> Thank u:) > >>> Lina Quote Link to comment Share on other sites More sharing options...
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