Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Hi , Is he on seizure medication? I know that when was able to orally...(up until age 7 I think)... he was on topomax for a while...and started refusing food. come to find out... topomax is an appetite suppresant. Sometimes the medicines can impact appetite... maybe?? also started refusing food when he started having worse reflux, and especially when he began aspirating while eating...it was painful, and he would choke and vomit. He got so bad...that after evaluation we found that his motor skills to swallow had degenerated and eating was not fun for him. Thank God we had the g tube then...he was rail thin even with the g tube. But I have a great GI team...and nutrition team....they helped me make sure we studied what and why...and asked questions. Growth and nutrition is critical... But for 2 days... perhaps he isnt feeling welll... my normal kids have both had that stomach flu and refused food for almost 72 hours. Hand in there.... I hope his appetite comes back. Hugs.. , Mom to ... age 12 bilateral diffuse PMG ________________________________ To: polymicrogyria Sent: Mon, February 15, 2010 11:28:27 AM Subject: Feeding issues Hi everyone, I was wanting to know if any of your children/grandchildren with PMG ever have days where they refuse food? My son has been doing it for 2 days now. He'll snack here and there but when it comes to breakfast, lunch, and dinner he won't touch his food. Yesterday the only meal he would eat was lunch. And he doesn't snack enough to be full. Is this normal?? -allison ..Micah BPP Sent on the Sprint® Now Network from my BlackBerry® ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Hi , Micah isn't on any seizure meds. His Neuro wants to wait until Micah has more frequent seizures. I also thought that maybe he was coming down with something but he's up running around, jumping, laughing... Ect..... Maybe its just a winter thing lol. I know in the summer time I'm not a big eater. Maybe he's like that in the winter. I dunno. I did call his nutritionist and GI specialist and they said to not worry about it unless Micah is just laying around and not active. I've been pushing fluids and he'll drink. So that makes me feel somewhat better. Thanks for the advice. Hope all is well with , and that he had fun tubeing lol. -allison Micah BPP Sent on the Sprint® Now Network from my BlackBerry® Feeding issues Hi everyone, I was wanting to know if any of your children/grandchildren with PMG ever have days where they refuse food? My son has been doing it for 2 days now. He'll snack here and there but when it comes to breakfast, lunch, and dinner he won't touch his food. Yesterday the only meal he would eat was lunch. And he doesn't snack enough to be full. Is this normal?? -allison ..Micah BPP Sent on the Sprint® Now Network from my BlackBerry® ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 Hi I know that there are feeding issues related to the Pmg actually that's why my son had to get a feeding tube because he wouldn't eat and you can't force them. My sons gi doc and nuerologist said this will be an ongoing battle for the rest of his life and the tube would help and it's amazing. Lindsey- mother of 3 > > Hi everyone, > I was wanting to know if any of your children/grandchildren with PMG ever have days where they refuse food? My son has been doing it for 2 days now. He'll snack here and there but when it comes to breakfast, lunch, and dinner he won't touch his food. Yesterday the only meal he would eat was lunch. And he doesn't snack enough to be full. Is this normal?? > -allison > .Micah BPP > Sent on the Sprint® Now Network from my BlackBerry® > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2010 Report Share Posted February 16, 2010 Hi , We had a feeding tube placed in our son 2 weeks ago. So far the tube has helped us a ton. He is 22 months old with frontal PMG. Wyatt could go weeks at a time without eatting anything, and then he would go back to eatting small amounts of food. Wyatt does not know how to chew, or suck, and has a swallow delay that causes his food to come out his nose. I was told by a doc that children with Wyatt's condition tend to cycle when it comes to how much they are willing to eat. Whether that is true or not I don't know. Miriam Subject: Feeding issues To: polymicrogyria Date: Monday, February 15, 2010, 4:28 PM Hi everyone, I was wanting to know if any of your children/grandchildren with PMG ever have days where they refuse food? My son has been doing it for 2 days now. He'll snack here and there but when it comes to breakfast, lunch, and dinner he won't touch his food. Yesterday the only meal he would eat was lunch. And he doesn't snack enough to be full. Is this normal?? -allison ..Micah BPP Sent on the Sprint® Now Network from my BlackBerry® ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 I have a Quetion for everyone. My Jenna is 9 and she weighs 50 pounds i know that she is behind on growth as are all children with pmg. i wanted to know a few things from anyone that can help. Jenna will eat normal at school and when she comes home she refuses to eat for me, and all she wants is pediasure to drink. Is that normal? i give it to her bc the nutrition she gets from it is good for her. I have had some trouble getting people to understand this. Tha if she doesnt want to eat what do i do not feed her? NO, i give her the formula to keep her healthy. i wanted to know if anyone else has this problem. I also wanted to know if anyone else has the problem that Jenna likes to spill things knock them over, and thinks its funny. I have tried to get along with this, but it is getting out of control. Behaviorly she is acting out and of course cant tell me what is going on or why she is doing it. i have thought about taking her to a behavioral therapist to figure out what is going on, and to help me figure out what is proper punishment for this. Spanking doesnt help, she will just look at you and laugh and act like the chasing after her and gettting on o her is a game to her and funny. Putting her in time out is not possible as she does not understand what standing still is. Also putting her in her room jto think about it does not work bc she likes to be in her room by herself anyway. I can not think of a proper punishment for her to get her to understand that the behaviors of throwing, hitting, punching, biting, and knocking things over is not acceptable. I am at my wits end trying to figure this out, and what to do. Sometimes i think that she knows that what she is doing is wrong and knows that she is different and can sometimes get away with things b/c of that. At those times i dont know what to do. I could use any feedback i could get from other parents of girls jennas age and if you have the same problems and what you did. It is easier to get in touch with me through facebook my name is Letitia Shope please look me up and add me i need a good support b/c i am doing this all on my own and dont know what to do. thank you Tish Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.