Deaf baby and motor skills

kat05 said:
He does use a few signs (food, sleep for example) after a lot of work. Do you visit a neurologist in America? What stresses me is that no doctor gives us a specific answer, everyone says "go on with the implant" without taking into consideration the rest ..
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Interesting they did not think about your kid's motor skills. why all of a sudden they focus on your kids hearing issue.
 
kat05 said:
His speech therapist has started signing and I am also trying at home. He has started to use 3-4 signs already. It's strange, my son has good fine motor skills (eating on his own, "writing" with crayons etc) but his gross motor skills seem to be the problem... Is there a test we could run to see whether this is CP? We have seen 3 neurologists all denying this diagnosis.
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There's no real test for CP...it seems to be a generic term for brain damage...Like hypotonia can mimic CP.
 
kat05 said:
Also, another question: his brain MRI is normal. Does that mean something?
Unfortunately, the doctors cannot give us answers they say that we "wait and see" so I have started searching the web. For the hearing part, my baby has started wearing HAs (he throws them every 30 secs) and we will apply for a CI in January.
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Again, if its mild it's not really anything to worry about. I know parents are all " what caused it? Why did it happen?" But in a lot of cases the answer is that they just don't know. It is possible he may have a very mild syndrome. I think the only thing you should be prepared for is the very real possibilty of a spoken language delay. Spoken language delays are VERY common with kids with hypotonia.
 
Deafdyke, I do hope so. My son has physical therapy and his therapist told me that even if he could hear, he would have a delay in the speaking compartment. So I guess that, given additionally his hearing, things with speaking will be a little tough. Should I expect him to acquire signs quickly? He seems to use only the signs he wants for things he enjoys. Is that common? Should I make him sign to me before I give him something he wants?
 
kat05 said:
Deafdyke, I do hope so. My son has physical therapy and his therapist told me that even if he could hear, he would have a delay in the speaking compartment. So I guess that, given additionally his hearing, things with speaking will be a little tough. Should I expect him to acquire signs quickly? He seems to use only the signs he wants for things he enjoys. Is that common? Should I make him sign to me before I give him something he wants?
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Oh so, they're already aware that he may have spoken language issues? AWESOME! I'm very impressed. Continue with any spoken language therapies, yes. Maybe take him for an evalution at a school or a program that may be familair with kids with spoken language issues. And yes, he will aquire signs very quickly. I think he'll have signs as his first language, and continue with any spoken language or augmentive/alternative communcation methods.
 
Given his hypotonia additionally to the ear issue, should I expect that he will acquire signing more slowly? I have no such experience in my family and do not know which pace is "normal" for a toddler to learn using new signs. Any clues?
 
You did say that his fine motor is OK.....I'm not 100% sure, but I would assume that means that he'll be able to aquire signed language skills normally. Is he getting speech therapy too?
 
Yes deafdyke, his fine motor seems OK. He is getting speech therapy, for both spoken language and signing. I just do not know how quickly he should start using his signs.
 
I would think he should start using them as he learns them, but then again, I am just learning myself.

My daughter has motor skills problems ans is unable to do a lot of the signs. Also, my husband also has motor skill issues that I never really paid attention to, and he is unable to form a lot of signs.

I get confused as to which motor skills are which, but daughter was born with delays in both fine motor and gross motor. She has problems with some things, but she can do beading. I find that a little odd, but then again, maybe I am wrong.

As for your son, I hope all goes well and he begins to pick up his signs quickly.
 
and for me, I'm half blind due to myopia (fancy way for saying I'm nearsighted) but I wear cute lil purple glasses :D
 
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my daughter didn't have motor issues but it is possible, depending on the cause of the hearing loss. If it is due to cmv, ushers or inner ear abnormalities then they could be related.
 
Another syndromic person here. Both of my kids had occupational therapy when they were younger. Both of them are doing great now. You have to allow your kid to develop at his own rate. Take him to therapy and work with him at home. Never compare him to other kids. Each kid is different.
 
After all, the MRI and CT scans showed, thank God, no ear abnormalities. We are also waiting for results from DNA tests (we were told to do so, they will be ready in a couple of months).
 
kat05 said:
After all, the MRI and CT scans showed, thank God, no ear abnormalities. We are also waiting for results from DNA tests (we were told to do so, they will be ready in a couple of months).
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that's good 2 hear my friend!
 
kat05 said:
Given his hypotonia additionally to the ear issue, should I expect that he will acquire signing more slowly? I have no such experience in my family and do not know which pace is "normal" for a toddler to learn using new signs. Any clues?
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I'm curious about the range of 'normal' for a signing vocabulary. One of our grandsons was born with multiple issues (one was severe hypotonia, more on that in a minute). He was so hypotonic he didn't swallow well, so is fed via a g-tube. He's had weekly occupational and physical therapy and other stuff, biweekly speech therapy since leaving the NICU at around 40 days of age.

I did sign with him for various reasons, but I get to see him twice a week, his parents weren't signing, his muscle tone was very poor, and he did not really pick up on it until they correctly identified his problem a year later and began to fix it. In the last 3 months or so he's pointing in a way that very obviously means *THAT!*, signing please, more, eat, water, and he's working hard on Daddy (I am sure that's what he means to say, he's pointing at Daddy, vocalizing in a tone indicating serious annoyance that he's not with Daddy, and then his hand will wave around and touch just about any part of his head or face, OH. MY. Goodness. He's so scrumptiously sweet)

In the last two weeks he started spontaneously putting two signs together to make basic sentences, and twice I've seen him do three. He had his annual evaluation today, and they said that his communication skills are at a level of a baby six months older. I think he's terribly bright, of course, but that surprised me. Since babies of signing parents typically have more advanced signing levels,I am just curious about what the average deaf baby with deaf parents, or even CODAs would be signing at a year. Does anybody know if there's a website somewhere with that info?

About the severe hypotonia- He turned out to have a rare gene mutation of the calcium receptors The result is his body does not recognize his calcium levels accurately, and leaches calcium from his bones, and also causes him to have levels in his blood and in his urine, but doesn't leave enough for the nerves and muscles to work with. Nerves and muscles have to have accurate calcium levels to work (apologies if you knew this, I didn't), and hypothyroidism can be caused by off track calcium levels. There are other reasons a baby might have off kilter calcium levels, and it's possible that the so called 'rare' gene mutation he has is not so much rare as it is undiscovered. Right now we know of two people with it in the world, though there are probably more we just haven't heard of. Oddly, one is a baby born on the west coast either the same age or within a couple months of our grandson, the other, of course, is our grandbaby, born in the midwest.

Sorry this is so long. But do you know your child's calcium levels? My daughter and her husband had to do DNA testing, and my grandson had other tests (Vitamin D levels, too, IIRC), because abnormal calcium can be caused by other things, but it definitely can cause hypthyroidism. And if there is a cause of hypotonia that can be fixed, I think it should be, the sooner the better.
 
My son has been taking several vitamins and aminoacids for a couple of months. It's quite strange, his hypotonia is only at the trunk. I believe that this is why he cannot walk unaided yet. On the other hand, we have checked his thyroid and done loads of blood tests. We are now waiting the results of the DNA tests.
 
kat05 said:
My son has been taking several vitamins and aminoacids for a couple of months. It's quite strange, his hypotonia is only at the trunk. I believe that this is why he cannot walk unaided yet. On the other hand, we have checked his thyroid and done loads of blood tests. We are now waiting the results of the DNA tests.
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I know this sounds weird, but the parathyroid gland/s is totally different from the thyroid (I also learned that only when our grandson was diagnosed). So thyroid tests don't have anything to do with parathyroid tests, and it's the parathyroid that regulates calcium levels. So confusing.

But if he's not hypotonic all over, my guess* is that it wouldn't be connected to calcium levels.

*as a rank amateur with no medical knowledge outside of personal experience of myself or my family, so it's just enough to justify asking if they know what his calcium levels are, not enough to justify any firm decisions.

P.S. there are two blood tests I know of for calicum, one is just a blood draw, one is a more painful arterial blood draw. My grandson's doctors believe the arterial draw is more accurate. OTOH, these are the same doctors who missed his high calcium levels for a YEAR, even though they had that information before he left the NICU.
 
Given my son's motor skills problems (plus the reason for his hearing loss has not been found) the doctors now say that it could me some kind of damage in his labyrinth (however his brain MRI came out normal...) I was wondering whether it is possible for a kid with a labyrinth damage to have an implant (as our doctor insists) and benefit from it.
 
you might not ever find out..
we still dont know what is wrong with our little frank..he still lacks fine motor skills, has low muscle tone, and is very delayed. except that he learned to walk on time! totally makes no sense at all.
we go back to the geneticist in may, but i dont know if they will find anything or not.
if your little guy is cognitively with it, then that is awesome! the problem we are having is that our little guy has hearing loss, but he is too delayed to understand or learn sign language, so he is left without any means of communication except for crying.
 
Wirelessly posted (droid)

I'm a mutant without a diagnosis and I'm living a great life. My kids inherited the gene and they're doing great. Don't focus on the small details and let the parade that is life pass you by.
 
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