Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 My 11 month old son, TJ, has PMG with cerebral palsy and epilepsy diagnoses. He has feeding issues due to his swallowing disorder. He gets most of his intake from breastfeeding b/c he apparently adapted enough to be able to suck/swallow/breathe while nursing. However, being 11 months, he is not getting all the nutrition he needs from this. We have some luck with a certain sippy cup, but he can only drink about 1-3 ounces at a time and that can take between 10-30 minutes. If that was the only way he drank, I would be holding a sippy all day long! He can also be spoonfed a minimal amount of food....mainly rice cereal thickened with whipping cream for the added calories and baby food meat. The other baby foods we had no luck b/c he just drooled it back out. Simply Thick didn't make it thick enough for him to swallow. We also have issues with him taking his medicine (Keppra) b/c I literally have to shoot it down the back of his throat to ensure he swallows the entire dose. And then it ends up choking him. I am curious is anyone had similar issues with their children and am wondering what your stories are. Did they improve with practice or did you have to get a feeding tube? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 have you thought about a G-tube? To: polymicrogyria From: susaneroberts@... Date: Sun, 10 Oct 2010 01:49:02 +0000 Subject: Feeding Issues My 11 month old son, TJ, has PMG with cerebral palsy and epilepsy diagnoses. He has feeding issues due to his swallowing disorder. He gets most of his intake from breastfeeding b/c he apparently adapted enough to be able to suck/swallow/breathe while nursing. However, being 11 months, he is not getting all the nutrition he needs from this. We have some luck with a certain sippy cup, but he can only drink about 1-3 ounces at a time and that can take between 10-30 minutes. If that was the only way he drank, I would be holding a sippy all day long! He can also be spoonfed a minimal amount of food....mainly rice cereal thickened with whipping cream for the added calories and baby food meat. The other baby foods we had no luck b/c he just drooled it back out. Simply Thick didn't make it thick enough for him to swallow. We also have issues with him taking his medicine (Keppra) b/c I literally have to shoot it down the back of his throat to ensure he swallows the entire dose. And then it ends up choking him. I am curious is anyone had similar issues with their children and am wondering what your stories are. Did they improve with practice or did you have to get a feeding tube? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 My son, Micah (age 3) has feeding issues. It started off with poor suction after he was born, but his suction did improve with time. Now he has issues with swollowing and choking. We were told speech therapy and feeding therapy would help. In our case, speech therapy isn't helping but we start seeing a new feeding therapist this Monday. Has your child had a swollow evaluation done? Micah still chokes on liquids here and there but it has gotten a LOT better! He also has has spurts where he will not eat for days but drinks a lot. I would talk to your developmental pediatrician if you have one. Feeding therapy is really good for this issue. -allison Sent on the Sprint® Now Network from my BlackBerry® Feeding Issues My 11 month old son, TJ, has PMG with cerebral palsy and epilepsy diagnoses. He has feeding issues due to his swallowing disorder. He gets most of his intake from breastfeeding b/c he apparently adapted enough to be able to suck/swallow/breathe while nursing. However, being 11 months, he is not getting all the nutrition he needs from this. We have some luck with a certain sippy cup, but he can only drink about 1-3 ounces at a time and that can take between 10-30 minutes. If that was the only way he drank, I would be holding a sippy all day long! He can also be spoonfed a minimal amount of food....mainly rice cereal thickened with whipping cream for the added calories and baby food meat. The other baby foods we had no luck b/c he just drooled it back out. Simply Thick didn't make it thick enough for him to swallow. We also have issues with him taking his medicine (Keppra) b/c I literally have to shoot it down the back of his throat to ensure he swallows the entire dose. And then it ends up choking him. I am curious is anyone had similar issues with their children and am wondering what your stories are. Did they improve with practice or did you have to get a feeding tube? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 We did a swallow study about 3 months ago and he was aspirating thin liquids a bit. Anything I try to get him to take from a sippy is thickened to nectar which helped alot in attempting to get him to drink. We see a speech therapist 2 times a week who does VitaStim with him. We won't know if that is working until his repeat swallow study in December. We saw the dev. ped. a month ago and she is having us do monthly weight checks before we see her again in Dec. She did mention a G tube, but we really don't want to go that route unless it is absolutely necessary. I don't know much about them, but don't want TJ to lose the abilities he has now of sucking and being able to eat some solids. Is a feeding therapist different than a speech therapist who helps with feeding? > > My son, Micah (age 3) has feeding issues. It started off with poor suction after he was born, but his suction did improve with time. Now he has issues with swollowing and choking. We were told speech therapy and feeding therapy would help. In our case, speech therapy isn't helping but we start seeing a new feeding therapist this Monday. Has your child had a swollow evaluation done? Micah still chokes on liquids here and there but it has gotten a LOT better! He also has has spurts where he will not eat for days but drinks a lot. I would talk to your developmental pediatrician if you have one. Feeding therapy is really good for this issue. > -allison > Sent on the Sprint® Now Network from my BlackBerry® > > Feeding Issues > > My 11 month old son, TJ, has PMG with cerebral palsy and epilepsy diagnoses. He has feeding issues due to his swallowing disorder. He gets most of his intake from breastfeeding b/c he apparently adapted enough to be able to suck/swallow/breathe while nursing. However, being 11 months, he is not getting all the nutrition he needs from this. We have some luck with a certain sippy cup, but he can only drink about 1-3 ounces at a time and that can take between 10-30 minutes. If that was the only way he drank, I would be holding a sippy all day long! He can also be spoonfed a minimal amount of food....mainly rice cereal thickened with whipping cream for the added calories and baby food meat. The other baby foods we had no luck b/c he just drooled it back out. Simply Thick didn't make it thick enough for him to swallow. We also have issues with him taking his medicine (Keppra) b/c I literally have to shoot it down the back of his throat to ensure he swallows the entire dose. And then it ends up choking him. I am curious is anyone had similar issues with their children and am wondering what your stories are. Did they improve with practice or did you have to get a feeding tube? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 In the early years...... was difficult to feed.  Each meal took an hour. He drank well...we thought...but he always coughed and sneezed. We found out later that all those years of trying to feed him as much as we could that he was coughing and sneezing due to his pooling of liquids/solids and slight aspiration. He was failure to thrive. We hired Speech Therapists who specialized in feeding to no avail. Finally a 2nd swallow study showed his Silent Aspiration. We saw a Gerber Stage 3 spaghetti noodle drop into his lungs. The Technician told us that if that happened to us...we would be in extreme pain. ....just learned to cough cough cough ...in hopes to clear what he could.  We scheduled a G-Tube placement immediately.  For feedings now ...he is so happy. For meds....we no longer have to try and hide/disguise his horrible tasting meds. Now we know for sure he gets all the medicine and for feedings....he is no longer worn out 3 hours a day trying to eat. Blessings, Sharon....Mom to (13) CP, Epilepsy, Osteopina, Scoliosis. Subject: Feeding Issues To: polymicrogyria Date: Saturday, October 9, 2010, 8:49 PM  My 11 month old son, TJ, has PMG with cerebral palsy and epilepsy diagnoses. He has feeding issues due to his swallowing disorder. He gets most of his intake from breastfeeding b/c he apparently adapted enough to be able to suck/swallow/breathe while nursing. However, being 11 months, he is not getting all the nutrition he needs from this. We have some luck with a certain sippy cup, but he can only drink about 1-3 ounces at a time and that can take between 10-30 minutes. If that was the only way he drank, I would be holding a sippy all day long! He can also be spoonfed a minimal amount of food....mainly rice cereal thickened with whipping cream for the added calories and baby food meat. The other baby foods we had no luck b/c he just drooled it back out. Simply Thick didn't make it thick enough for him to swallow. We also have issues with him taking his medicine (Keppra) b/c I literally have to shoot it down the back of his throat to ensure he swallows the entire dose. And then it ends up choking him. I am curious is anyone had similar issues with their children and am wondering what your stories are. Did they improve with practice or did you have to get a feeding tube? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 , We've had feeding issues with our granddaughter Lindsey since birth. She has always though taken her bottle well. I might add still does at 8 years old!. Since taking Keppra in 2008, my daughter puts it in her bottle with about 2-3 oz of Pedisure and makes sure to give it when she's hungry. Since Pedisure is her main source of nutrition she takes it well. How many more years will she take a bottle with her medication? Who knows. For now it works. Lindsey could never take her meds alone since she chokes on thin liquids etc. and would let it run out of her mouth. We just figure if she were on a feeding tube she would be getting Pedisure in it as a her main source of nutrition anyway. We'll at sometime probably have to resort to a G tube or feeding tube but for now she still loves her bottle and stays really healthy on it because of all the vitamins she gets in it. She does eat yogurt, mashed potatoes, and a few pureed foods as well. Hope this helps. It does take a lot of time and patience to do things this way but my daughter doesn't mind so until she has to do otherwise this works. Hope this helps. Hugs and Blessings, Bonnie (grandmother to Lindsey with severe PMG/seizures) Bonnie Subject: Re: Feeding Issues To: polymicrogyria Date: Sunday, October 10, 2010, 9:30 PM  I have alot of issues giving medicine to my daughter,, I try and include it in a small amount like an ounce or so of formula or i very slowly put drops of it in her mouth,, takes forever but its the only way to ensure she wont puke it as she knows how to do it oh so well. > > My 11 month old son, TJ, has PMG with cerebral palsy and epilepsy diagnoses. He has feeding issues due to his swallowing disorder. He gets most of his intake from breastfeeding b/c he apparently adapted enough to be able to suck/swallow/breathe while nursing. However, being 11 months, he is not getting all the nutrition he needs from this. We have some luck with a certain sippy cup, but he can only drink about 1-3 ounces at a time and that can take between 10-30 minutes. If that was the only way he drank, I would be holding a sippy all day long! He can also be spoonfed a minimal amount of food....mainly rice cereal thickened with whipping cream for the added calories and baby food meat. The other baby foods we had no luck b/c he just drooled it back out. Simply Thick didn't make it thick enough for him to swallow. We also have issues with him taking his medicine (Keppra) b/c I literally have to shoot it down the back of his throat to ensure he swallows the entire dose. And then it ends up choking him. I am curious is anyone had similar issues with their children and am wondering what your stories are. Did they improve with practice or did you have to get a feeding tube? > Quote Link to comment Share on other sites More sharing options...
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