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Hello everyone,

I'm new to this group, and I'm not certain how this works. I guess I'll just start with our story.

My twins were born 10 weeks premature. They had twin to twin transfusion syndrome, and my donor twin was inter-uterine growth restricted. By the time they took the boys out, he had no fluid left around him. After they came out, my donor twin seemed strong and happy. But I was not allowed down the NICU to see my recipient twin for about 6 hours after the C-section because they were still working on him. When I got down there, he was still in triage. He had some severe bleeding after they tried to intubate him, and I believe they had some problems getting him hooked up to oxygen. None of this is to say that the doctors screwed up. They were doing everything they possibly could. His journey was just difficult.

Anyway, outside of severe feeding problems from my donor twin (a common side effect of TTTS) my boys seemed to be doing very well up until about May, which was their fifth month. We started noticing that our recipient twin was not unfisting his hands, and his head had a distinct lag. We got him into early intervention physical and occupational therapy, but he hasn't been developing very quickly. He's just now getting his hands out off fists, and we need to give him hand splints to get his thumbs out of the hands. He can prop sit, but he can't sit fully independently. He still hasn't rolled over from his back to his belly, and he's now 10 months old.

In any case, how long does it take for hypotonic infants to overcome some of these lags? Has anyone tried any alternative therapies or exercises that they've found helped? I read about hydrotherapy on a British board. Has anyone tried this? My guy LOVES the water, so I was wondering if this might help to develop his strenth. Is there anything else I can look into to help him overcome his low muscle tone?

I'm so glad to have found this board! I've been feeling very alone. When I tell people about my baby's hard work and what we've been going through, it's amazing how many people will say, "Oh, he's just lazy," or "Of course he'll be OK. Look at him. There's nothing wrong with him." I want to believve with all my heart that there's nothing wrong with him, but I know that hypotonia is something that's very wrong with him. I just want him to be able to help him to overcome this as best I possibly can.

Thanks for all of your feedback, and thanks for being here!
Posted on 10/22/08, 10:00 pm
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Reply #1 - 10/23/08  9:43am
" HI and yep have found the right place,,
My daughter has low tone from the waist down, she wears afos for her feet, and we have PT for the core strengthing,,,

ANd yes water is good for muscle strengthing, My daughter is 3 so she has ankle weights and does ball exercies, for core strength, "
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Reply #2 - 10/23/08  1:29pm
" Hi & welcome. My daughter was very chubby at 6 months old so we didn't know anything was abnormal, we thought she was just fat & happy. Turned out at 11 months old when we were starting to realize something was wrong & she wasn't lazy, we started going to all the specialists. At 13mo. they found that she has a myelin problem. Her tests have all come back normal, so there is no diagnosis, but she doesn't have all her myelin around her nerves in the brain (& she was full term baby). Since all kinds of kids get hypotonia you'll probably see a wide range of situations. My daughter is almost 15 months old & prop sits & has the head lag too. She also has her startle reflex that should have gone away around 5months. She's improving incredibly slowly. She pushed up on her first birthday, and is now trying to say Mama. She babbles all day long & it's great. She goes to PT 2x/week, we have a lot of contact with the Neuro's office, & she goes to Chiropractor & Homeopath, & I put her (& myself) on a gluten free diet. She has no dairy, but I still do dairy. (still breastfeeding because it helps the brain develop). I have heard great things about aquatic therapy, and also have heard of DHA supplementation & HBOT for brain development. My kid's legs got much better almost overnight around 13mo old. Trunk upper body are still her trouble areas. She'll take steps if we support the shoulders. It is a LONG process, & we're right in the middle. "

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