My 10 month old has hypotonia, cant sit or crawl and can only roll over. He also has feeding problems and has a nasogastric tube and is on elecare, similar to neocate. He was BF until 8 months and then just weaned himself. We haven't been able to get any milk into him no matter what we try. He is 7.6 kg - was 6.9 before feeding tube and elecare started 3 weeks ago. Been told that it is likely milk protein problem as he is happy on the elecare and putting on weight. Problem is I cant get it into him orally. It seems he may have an aversion to milk because of the pain it has caused him in the past.
We have had chromosome tests and waiting for results. We see a geneticist next week. We have been doing conductive therapy twice a week which is seeing great improvements.
Is anyone else out there going through similar issues, hypotonia, delayed development etc. Would love to hear your stories.
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24-11-2012 16:51 #1Junior Member
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29-11-2012 17:09 #2Member
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I cannot help you with the hypotonia but i can help with the feeding issues and oral aversion. My son whom is now almost 5 had to have heart surgery and he was not able to feed orally due to a complication of the surgery (vocal chord palsy) and also due to aspirating thin liquids if taken orally and he also had an aversion to the bottle due to us trying so hard to feed him orally. Kaden was tube fed till he was 9 months old. We tried every kind of bottle and teat combo you could think of but when we realised it was a bottle aversion we changed to a Pigeon soft teat sippy cup (the orange cups) and then he quickly went to a straw cup that he actually had to sit up and suck to get liquid out of (not sure how this would go with your little one not sitting yet).
Make sure you are linked in with all the care providers you can like Early intervention via your public hospital and also a lactation consultant as even though you are not breast feeding, they can give you great tips on feeding a baby.
I hope that you can get some answers and results soon as to why your little one has the hypotonia and you can start making some progress towards being tube free.
26-12-2012 13:20 #3
A speech therapist may be able to give you some tips. My little girl had Down syndrome so had hypotonia and was NG tube fed from birth. When she was very little she was able to suck at the breast but not swallow. We used a lot of oral stimulation just to get her to learn how to use her mouth. There are lots of sensory tools you can get just to get them to learn how to use their mouth - vibrating dummies, silicone finger gloves with bumps on them you massage their tongue and gums with, plastic toothbrush looking things with bumps instead of bristles.
By BabyGMB in forum Parents of Children with Special NeedsReplies: 13Last Post: 21-08-2012, 16:57
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