Guest guest Posted January 19, 2006 Report Share Posted January 19, 2006 hi im a nurse and the people in th nursing home i worked in use to take your food formula too as a laxative-charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 It's good to know that I am not the only one with that idea!! Ha ha:) My son never knows anythinig is in there unless I add too much. Barb Re: [ ] Re: hello hi im a nurse and the people in th nursing home i worked in use to take your food formula too as a laxative-charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Thank you for the information. I will certainly try it!! [ ] Re: hello >Thanks ine I will try it. Dana > Hi Dana > > My daughter had the same problem and we where told to try the following with her. > > 1 cup of pineapple > 1 cop of bran > 1 cup of pitted dates > and about half a cup of pineapple juice > Blend all ingredient's together. > > We started Tabatha on 1/4 of a teaspoon for about 3 days if nothing happens slowly increase the amount until the child goes. > > I ended up having to give Tabatha about a soup spoon size before anything happened but once she did then we decreased the amount that she need. > > Now she has a teaspoon before she goes to bed every 3rd night and she happily sits on the toilet every morning. > > Each child is different so it just a matter of playing around until you find what works with your child. > > The mixture last for about a 10 days. > > I have given this recipe to a few of my girlfriends when their children can't go and it always seems to work and the children like the taste. > > ine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Sounds great. My phone number is (973) 663-1138. Give me a call and we can try and set up a playdate or just talk. Dana Millar > Hello everyone, I was just reading some messages and as always all of > you are so informative. Just to let you know that I have an almost 4 > year old son with severe apraxia, mild hypotonia,and now presently > being screened for Sensory Integration Disorder (very orally sensory > seeking and whole body sensory seeking). Anyway my son was diagnosed > when he was 2 1/2 and has been in therapy since then. He is currently > in Preschool disabled in our district, but this year we fought to have > him placed in preschool inclusion. He is doing well in this setting. > Also just wanted to ellaborate more about Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2006 Report Share Posted January 23, 2006 Hi Dana - I have a 3 yr old with PDD and a 4 yr old that sounds like your son. goes to PG Chambers school in Cedar Knolls. We live in Sparta but do a lot in the town area. If you would like to contact me off line (mmcortese2006@...) maybe we can exchange local information or get the kids together to play. Regards Cortese Dana & Matt <my2boysjm@...> wrote: Hello everyone, I was just reading some messages and as always all of you are so informative. Just to let you know that I have an almost 4 year old son with severe apraxia, mild hypotonia,and now presently being screened for Sensory Integration Disorder (very orally sensory seeking and whole body sensory seeking). Anyway my son was diagnosed when he was 2 1/2 and has been in therapy since then. He is currently in Preschool disabled in our district, but this year we fought to have him placed in preschool inclusion. He is doing well in this setting. Also just wanted to ellaborate more about Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Hi, Would you please share Dr. Abba Caragan's phone number and if he took your insurance? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Sure, Dr. Abba Cargan. Pediatric Neurology 1122 Route 22 W. 2nd Floor, Mountainside, NJ 07092 Phone (908) 233-5000 Fax (908) 233-5523 Dr. Cargan does not take insurance, my school district paid for his evaluation. Hope this helps. Dana Millar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Hi, Would you please share Dr. Abba Caragan's phone number and if he took your insurance? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 In a message dated 04/03/2006 19:56:03 GMT Standard Time, jenneedle0525@... writes: Hello,I am brand new I just subscribed to this group. My daughter is 4 yrs old and Autistic. She is mostly non-verbal. I have cone all sorts of testing and she has suggestions of yeast overgrowth among other things. She was GFCF for 9 months but we stopped due to monetary reasons. I received a suggestion to start her on enzymes and to leave her off GFCF.I was thinking of starting her on enzymes. However don't they have to be given at every meal. She is in a full day program. I would only be able to give them before breakfast and dinner. Thanks for your help. I really do not know much about the benefit of enzymes. >>>hello Go to s site and have a good read - all is explained there _www.enzymestuff.com_ (http://www.enzymestuff.com) Good luck, we stopped diet and swicthed to enzymes with much greater success Mandi in UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Also, I had my doctor write a note for me to submit to school that he needed enzymes before his lunch/snacks etc. We have this written into his IEP so he goes to the nurse, she mixes them in applesauce that I provide and then goes off to lunch. This is another way to handle school. After reading on enzymestuff.com, look at Peptizyde or AFP Peptizyde here: www.houstonni.com this is the enzyme that targets gluten, casein and soy proteins. We too have GREAT success with them!! Their customer service is wonderful too. Call them and ask any questions about it too. The best advice I can tell you is to use begin them low (dose) and slowly increase until your child is adjusted to them. It too my children about 3 weeks to adjust to them. Jackie--- > Go to s site and have a good read - all is explained there > > _www.enzymestuff.com_ (http://www.enzymestuff.com) > > Good luck, we stopped diet and swicthed to enzymes with much greater > success > > > Mandi in UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 Subject: ( ) hello hi all i am shell mum of 6 my yougest as autism my 4 year old is bieng assessed for aspergers Hi Shell! Welcome to our group! Feel free to join in anytime you like! Roxanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 hey Shell, welcome to this group. I hope you find it as useful as I have! erica Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Hi there Elycia, Welcome to the group! Congrats on your twins!! You never know about insurance, both of my boys have/had helmets, and the first time with both of them we were told it wouldn't be covered. If the first time you get denied, you can always appeal it. There are people on here very familiar with that process and if it comes to that, will help you. Good luck on Tuesday and post when you are done if you find the time! Kim mom to 3 Kaela, 11 no issues Jaxson 2 years 9 mo - wore CranioCap 4.5 months then, at 18 mo had Craniotomy w/reconstruction of skull to correct plagio Eli - 9 mo - wore STARband Nov 05- April 06 now waiting arrival of Hangerband > > Hello everyone: > > I am new here and wanted to say hello. I have twin girls Mya and Mia > and Mya has plagiocephaly. I have an appt. on Tuesday to get her > measurements, unfortunately, it doesn't appear that our insurance will > cover. We will have to see. My doctor sent a letter of medical > necessity with me and said potentially we can use the fact that they > are twins and a restricted intrauterine environment, but I still am > not sure. I really hope the insurance pans out because since we had > the babies we are on 1 income and it has been tough. As you can > probably imagine, the cost of putting twin infants in daycare will > stop almost any mother from going back to work. > > Anyways, I will let you guys know the outcome. I look forward to > getting to know all of you parents. So happy to find this group. > > Elycia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Hi Elycia, Welcome to the group. Who is your insurance company? Maybe someone here has had some luck with them. Where are you going for treatment? -- In Plagiocephaly , " elycia_snyder " <u2girl@...> wrote: > > Hello everyone: > > I am new here and wanted to say hello. I have twin girls Mya and Mia > and Mya has plagiocephaly. I have an appt. on Tuesday to get her > measurements, unfortunately, it doesn't appear that our insurance will > cover. We will have to see. My doctor sent a letter of medical > necessity with me and said potentially we can use the fact that they > are twins and a restricted intrauterine environment, but I still am > not sure. I really hope the insurance pans out because since we had > the babies we are on 1 income and it has been tough. As you can > probably imagine, the cost of putting twin infants in daycare will > stop almost any mother from going back to work. > > Anyways, I will let you guys know the outcome. I look forward to > getting to know all of you parents. So happy to find this group. > > Elycia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 Hello welcome to the group. I am a twin mom too. I hope your insurance comes through for you. Let us know how the measurements go. Haylee mom to andre doc band grad > > Hello everyone: > > I am new here and wanted to say hello. I have twin girls Mya and Mia > and Mya has plagiocephaly. I have an appt. on Tuesday to get her > measurements, unfortunately, it doesn't appear that our insurance will > cover. We will have to see. My doctor sent a letter of medical > necessity with me and said potentially we can use the fact that they > are twins and a restricted intrauterine environment, but I still am > not sure. I really hope the insurance pans out because since we had > the babies we are on 1 income and it has been tough. As you can > probably imagine, the cost of putting twin infants in daycare will > stop almost any mother from going back to work. > > Anyways, I will let you guys know the outcome. I look forward to > getting to know all of you parents. So happy to find this group. > > Elycia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 hi Dana, Welcome to the group. My oldest will be 3 on the 11th and her cousin will be 2 on the 12th na, DOC Grad 2/04 Kiersten, DOC Grad 4/06 www.thefilyaws.com/plagio/plaigo.html > > Hey, my name is Dana and I have b/g twins that will be on on June 12th > my son Nolan did have to wear the helmet he is almost finished with it > I do see a difference !!!! I would love to hear from other mothers!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Hi Dana, I have b/b twins who wear starbands. So far they are having great progress. My boys, and Vedder, have been in helmets since Feb '06. may be out of his within the next month, not sure with Vedder. Good luck and welcome to the group. Sunshine mommie to and Vedder, Starband since 2/16/06 one year old > > Hey, my name is Dana and I have b/g twins that will be on on June 12th > my son Nolan did have to wear the helmet he is almost finished with it > I do see a difference !!!! I would love to hear from other mothers!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 --Hi Leah, I too am a new member and my son is 7 months old. He was diagnosed with brachycephaly at the neurosurgeons office today. I feel guilty too, but unlike your peds all along, mine never mentioned my sons head at all. Evan at his 6 month check up the doc felt his head and never said a word. At the time I was busy asking other questions and preparing for the shots so didnt question him. After a few days though I started thinking about things and realised that I wanted to go back with them specifically checking his head, also I had noticed a tightness in his neck, with him favoring one side. Also, he has never liked tummy time, and always has slept on his back. Well, to cut a long story short, if I hadnt have pushed for a second opinion this would not have been diagnosed. She says its moderate to severe and we have to get a helmet for him. Talk about not having faith in the ped. anymore! Anyway, just wanted to pipe in there and say youre not alone. Glad to have this website though.... - In Plagiocephaly , leah_black@... wrote: > > I am a new member and am just reading all the messages. I hate > to be the sourpuss, but I am not near as positive as you all are! My > daughter is almost 6 months and was diagnosed with brachycephalic. > We > are going to the neurosurgeon on Thursday to see what he thinks. My > overwhelming feeling right now is GUILT! As a first time mom, I did > not know how important it was to rotate sleeping positions!!!! My > doctor did notice the back of her head becoming flat at her 2 and > 4-month check-up, but she did NOT make a big deal about it!!! She > actually told me at her 4-month check-up that even if I tried > switching her sleeping position, would probably just end up on > her back....so I felt there wasn't much bother in doing it. Well, > after a trip home to my parents my mother INSISTED I see another > doctor. She (my mother) is a Labor & Delivery nurse for 30+ years > and > had not seen a babies head shaped as 's was. So, I took her in > and now am having these terrible guilty feelings that this could have > been prevented!!!! Also, am I the only one that does not like the > looks of the helmets???? In this age of technology, can't there be > anything that looks better to the eye? I don't want to sound so > pessimistic, as I know there are sooooo many other things that my > angel could have, but I feel this is MY fault!!!! Also, if anyone > can > tell me what is soooo bad about the helmets and soooo good about the > bands, I would appreciate it. Is it worth traveling 5+ hours for the > bands each way? If these bands are soooo good, why aren't they > available in every city? Sorry to ramble. > > If you have the time to look, I have put 's pictures of her > flat > head on my website and would appreciate anyone looking at them to > compare if their child had improvement with a similar looking head. > http://www.geocities.com/leah_black/brachy.html > > Thank you, > Leah > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 > > My name is Kate and my daughter is 11 weeks old and her name is Siena. > Siena has acid reflux and some tightening in her neck muscles not > quite torticollis her pt said. The pt also mentioned that she has mild > to moderate plagio...so we have been instructed to reposition and work > on her neck flexion - and thats going great. Has anyone had any > success with repo at this age. Being a first time mom I m terribly > worried. My daughters pediatrician said its nothing he would worry > about now as she is so young and that so much can change with > repositioning. I am just trying to get more info. > Thank you > Kate > Hi Kate! My son, Logan, has tort. and mild plagio. on the left rear and right front. We repo'd for 3 months with some definite improvement and it is a lot of work but worth it. No bouncy seats or swings,limited car seat time, limited time on the head except to sleep really. For walks around the block I used a Bjorn carrier instead of the stroller, and most of our playtime was on his tummy even though he still HATES it! If he were a girl I MAY have left his head being it is fairly mild, but being a boy we've decided to go for the DOC Band to finish off the rest. It just seems lately that although the left side has rounded out, it isn't quite catching up with the right side. The band will help where he needs it and I really believe all the repo. we did has made it so that he won't have to wear the band for too long and changed him from moderate plagio. to mild/moderate. Always go with you Mommy Instinct, it can't fail you. Good Luck to you and your little girl. Jaclin Mom to Logan 1.3.06 tort. and plagio and Jarod 8.21.99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2006 Report Share Posted June 23, 2006 Hi Leah, My name is Kate and my 11 week old daughters name is Siena. I too feel sooooooooooooo guilty i feel like its my fault and i should have been more villigent. Right now we are doing repositioning to try and alleviate the problem, we will see i hope it works as I share your sentiment about the bands, i am not 100 percent convinced but i havent done enough research to reach any conclusions. I tried to look at your daughters pics but the link cant be found can you resend it? I hope you and your prescious little girl are doing well Kate Kate Trifilettikdtrifilettti@...HM: 303-451-9583CL: 720-206-4060 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Hi, I'm new too. Just been here a few days. It does make you second guess your ped. I mentioned my daughter's head at her 2 month and he said to wait and see what it looked like at 4 months. He didn't tell me what I might do to help correct it. I only found this forum after we went to the neuro. He hasn't even officially diagnosed her with plagiocephaly. We have to have the CAT scan to make sure it's not craniosynostosis and go from there. He didn't offer much of anything and I felt like I was totally unprepared because it was a rush appointment that someone had cancelled so we had less than 24 hours to even think about it. Are you finding it difficult to decide what brand of helmet/band to choose? Or do you have a choice where you live? Holly Avery, 4 mos. > > > > I am a new member and am just reading all the messages. I > hate > > to be the sourpuss, but I am not near as positive as you all are! > My > > daughter is almost 6 months and was diagnosed with brachycephalic. > > We > > are going to the neurosurgeon on Thursday to see what he thinks. > My > > overwhelming feeling right now is GUILT! As a first time mom, I > did > > not know how important it was to rotate sleeping positions!!!! My > > doctor did notice the back of her head becoming flat at her 2 and > > 4-month check-up, but she did NOT make a big deal about it!!! She > > actually told me at her 4-month check-up that even if I tried > > switching her sleeping position, would probably just end up > on > > her back....so I felt there wasn't much bother in doing it. Well, > > after a trip home to my parents my mother INSISTED I see another > > doctor. She (my mother) is a Labor & Delivery nurse for 30+ years > > and > > had not seen a babies head shaped as 's was. So, I took her > in > > and now am having these terrible guilty feelings that this could > have > > been prevented!!!! Also, am I the only one that does not like the > > looks of the helmets???? In this age of technology, can't there > be > > anything that looks better to the eye? I don't want to sound so > > pessimistic, as I know there are sooooo many other things that my > > angel could have, but I feel this is MY fault!!!! Also, if anyone > > can > > tell me what is soooo bad about the helmets and soooo good about > the > > bands, I would appreciate it. Is it worth traveling 5+ hours for > the > > bands each way? If these bands are soooo good, why aren't they > > available in every city? Sorry to ramble. > > > > If you have the time to look, I have put 's pictures of her > > flat > > head on my website and would appreciate anyone looking at them to > > compare if their child had improvement with a similar looking > head. > > http://www.geocities.com/leah_black/brachy.html > > > > Thank you, > > Leah > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Hi Leah, I am pretty new here too, and I know what you mean! I've had some guilt too. My son Jerry will be a year old next week, and he only started wearing a helmet a little over 3 weeks ago. I first noticed his flat head when he was about 8 weeks old, and I was mortified. But when I asked his ped about it, he just said not to worry, it would round out on its own, that he didn't have any 10-year-old patients with heads shaped like my son's. He gave me some repositioning tips, but said that the real progress would happen once he started sitting up (i.e. around 6-7 mos). So we repositioned like mad. Then once he started sitting up we waited and watched. His head did get better, but it was still noticeably assymetric. The final straw that made me insist for a referral was when we went in to the doc when Jerry was sick, and we saw a different doc since Jerry's ped wasn't in, and I asked the other doc about Jerry's head, and she said flat-out that it would not get much better on its own (he was nearly 9 months by this time) (she also said she didn't think it was bad enough for treatment). So I got a referral from our ped to a craniofacial plastic surgeon. Jerry's had his helmet about 3 weeks and is doing great with it, and his head is already looking better. His plagio must have been fairly significant, since our insurance gave pre-approval for the helmet, even though they had told me they almost never pay for the helmets. Anyway, I do feel a lot of guilt for not doing this sooner when it could have been more effective. But what do you do when everyone around you is telling you not to worry, that it will get better on its own, and you don't know any better???? I've also felt guilty that it happened in the first place, that maybe I didn't hold him enough and left him laying on his back too much, etc, etc. The thought I can share with you is that I have twins, and they've both had the same amount of holding and time on their backs and time in car seats, etc, etc, and only one of them developed plagio. I think some babies are just more susceptible than others, and some experience growth restriction in the womb that ultimately causes them to favor one side when they come out. There's not always something we could have done to prevent these things, I think. And as a new mom (I'm one too), how would you know something like this could happen? I also don't like the looks of the helmets/bands! And it's hard to see them on your cute baby's head. When we get to give Jerry a break from his helmet, I am always just so happy to see his cute head! I miss it!!! And in this age of technology, why cant they make helmets that breathe, so they are not so hot and sweaty???? I don't really know the difference between bands and helmets. We have one from Hanger, it looks like a helmet but I think it's referred to as a band. We too have to drive a long way (200 miles each way) to see the plastic surgeon and orthotist. That's a tough trip on a little guy who wants to be crawling around and exploring! Good luck with your daughter's treatment. Six months old is a good time to be starting. All my best, Joan mom to Jerry (born 7/4/05, plagio, Hanger helmet 6/5/06) and (born 7/4/05, no plagio) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 I'm sorry this is hard. I know the initial diagnosis is a shock. But having a definate diagnosis is better than wondering what's up...better for him and you. Now you can get the help for him that he needs (and you know what won't work). What worked for us is Speech Therapy (OT didn't do much), and even though it's not therapy, sending him to a Montessori program (though it's hard to find a good one, and they have long waiting lists). I can't tell you how much this benefitted him. But I think the foremost thing to keep in mind with autism is that it's a spectrum: no two people with it will act alike, and people can't expect certain behaviors. It's not fair. Also, whatever therapies will work with one won't be beneficial for another. There are generalities, of course. But I'd focus on HIM. What are his specific needs, regardless of his autism. For ex., Max needed/needs help in " pragmatics " - conversational - speech. I don't know if that is part of his autism or not, but he needed help, so we got him ST. Hope this helps. - Adrienne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Austin was in st for about a year when they decided that even though he was saying words without understanding the meaning of them just repeating what he heard others say that he didnt need it anymore but now they are saying that he is going to get it again. they had stopped ot when we moved from pa to al say he didnt qualify for it here yet he did there i didnt understand that but i went with it he has had what they called a special helper come every other week and they dont plan to increase that even though i think he needs more because he refuses to even play near other children in his class the only time he might get close is to eat color or listen to music time (which is more then he did at the other day care we pulled him out of) our biggest thing is none offered us any help but they are going out of their way to help the day care dont get me wrong i am happy they are helping the daycare but shouldnt someone be offering me and my husband some tips at least the only thing they did for us is give us a print out of some medical text that we didnt really understand and sent us on our way we know some of the things that he does are due to the autism but what else do we look for what should we expect what can we do to help him shouldnt they be helping us with some of those questions oh and i have a question being in the water seems to calm him or anything to do with water like the sound of it watching our fish tank for hours or just watching water run is that part of it also we got a dog not to long ago and he seems to have opened up to him is that part of it too i know i am asking alot of questions but i dont know anything about this and need as much help as possible e Adrienne Lehmann <adriennerob@...> wrote: I'm sorry this is hard. I know the initial diagnosis is a shock. But having a definate diagnosis is better than wondering what's up...better for him and you. Now you can get the help for him that he needs (and you know what won't work). What worked for us is Speech Therapy (OT didn't do much), and even though it's not therapy, sending him to a Montessori program (though it's hard to find a good one, and they have long waiting lists). I can't tell you how much this benefitted him. But I think the foremost thing to keep in mind with autism is that it's a spectrum: no two people with it will act alike, and people can't expect certain behaviors. It's not fair. Also, whatever therapies will work with one won't be beneficial for another. There are generalities, of course. But I'd focus on HIM. What are his specific needs, regardless of his autism. For ex., Max needed/needs help in " pragmatics " - conversational - speech. I don't know if that is part of his autism or not, but he needed help, so we got him ST. Hope this helps. - Adrienne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 e, if a service is stopped there has to be clear data showing the child has either met all his/her goals or no longer needs the service. They can't just stop it because they want to. When was the last time your son had a full speech evaluation? I would request one in writing (to include pragmatic speech testing). Pragamatics testing is important because that is " social " speech. Making a conversation, eye contact, maintaining conversation etc. I would also look into your local Parent Information Center or Autism Project/Society. If you let me know where you are located I can get the specific information for you. Our Autism Society here in RI has a room where parents can go and read/borrow books on Autism, use the computer etc. It is also a great place to connect and share information with other parents. Lastly, yes the water would be providing your son with " heavy " work and sensory input. My son loves the water too. I would build lots of sensory " breaks " into your son's day. Again, if he hasn't had a recent Occupational Therapy evalualtion, I would request one in writing to the school department. Sensory diet can help alot to keep a child on task, make them feel comfortable in their environment and help them function in the classroom setting. Pam Quote Link to comment Share on other sites More sharing options...
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