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My 6 month old just diagnosed-what 2 expect
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Two days ago my 6 month old, was diagnosed with hypotonia. To back up a bit, when he was born it was thought that his ears were low set and his head was a bit large (probably true about the his head b/c he was basically 9 lbs) and he has simian lines on both hands. After measurements they cleared him of down syndrome, which was what they thought he had. His facial characteristics are normal but b/c of the other symptoms they thought he had it.

I had surgery in December and have had a-lot going on so last month was the soonest I could get him into the doctor & start getting him up to date on shots. The doctor did his exam and told me that his muscle tone wasn't even as good as a 2 month olds. He then said he wanted to order a chromosome test, and asked to see his hands. I jumped right in by telling him that if he was looking for simian lines, he had them on both.

We finally got the chromosome test back and he does not have down syndrome, which we believed he didn't in the first place. Physical Therapists were sent out to do their initial evaluations and they concluded that his hypotonia is mild.

So here are their findings, which since this is still so new I don't know if this is typical, or what I should expect.

His legs although weak, are much stronger than they suspected. His neck and facial muscles are strong and seem normal. His hands are very very strong. His mid section is weak, and his arms and shoulders are very weak. He can't sit, and when his arms or legs are tucked under him, he can't move them at all. He can get from his back to his side sometimes, and every now and again can squirm onto his belly. He cannot get from front to back. He tries to sit up with the very top portion of his body, but it does him no good. They also concluded that he is of very high intelligence, and socially is at a stage well above his age, as he has been talking and mimicking since he was just shy of 3 months old. (they say this can be typical for babies with hypotonia because they overcompensate for what they cant do... I dunno)

My question is, will this always affect him, and does this sound pretty mild? If so, what are possibilities we may be facing as far as delay and physical capabilities go. What can I do to help him? I was given a bumbo seat today, but he freaked out a bit when we put him in it and jerked his head and neck all the way backwards and then quickly forwards. We took him out of it and now I'm a little discouraged with that already.

Someone told me that johnny jump ups, saucers, and walkers are not good for him. Is this true because I have all three? This is so new to me and I just want to do what's best.

And also, I know hypotonia can be present on its own, but is it usually often related to something, such as muscular dystrophy and others, or is it usually not related to another illness. If it is, does this sound familiar to anyone, in terms of everything he has with the simian lines and everything. If there's something that sounds like he could have that requires genetic testing, I would love some suggestions of what I can tell the doctor I've found out. I have heard that if hypotonia is caused by something it's hard to diagnose, but I'm hoping that something here stands out to someone. I personally have narrowed things down to a couple of things that hypotonia could be a symptom of for him.

Again, sorry for all the questions. I just have never known about this before and feel like there's so much I can learn from those who have already been through this.

Thanks so much in advance, and take care!
Posted on 03/21/09, 11:42 pm
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Reply #1 - 03/22/09  12:22am
" Just thought I would add..When my son is held standing, he puts his weight on his tippy toes. My husband walked on his tippy toes clear into his teens, and even will still do it. Also, if we are holding the baby sometimes he completely locks up his whole body stiff as a board and rears backwards as far as possible. I don't know if these things have to do with hypotonia, but thought I would bring them up.

I also have thyroid problems and they run in my family really bad. I read somewhere that it can cause hypotonia. Also, both myself and my sons have features like that of the 22q13 Deletion Syndrome. (pointed chin, larger ears, my oldest sometimes has speech issues, I have a very high tolerance to heat pains, like I could put my hand in boiling water and either not feel it, or it would take a long time to feel it, and my youngest has droopy eyelids a little bit but he does have a blocked tear duct too.) So now I'm wondering if it's possible that me and my 2 sons could have this, but my youngest is the one showing the hypotonia and my other son and I don't show as many signs of it. I guess I'm grasping for straws at this point, but I can see a-lot of similarities between all 3 of us, and if this is something genetic I figure why not.

And if it relates, my son has what appears to be eczema and it's really bad on his legs. I know this relates to Dermatomyositis which can cause hypotonia. Anyways okay I guess I covered everything now! Hopefully some of this will make sense to someone. "
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Reply #2 - 03/23/09  12:32pm
" Hello, my daughter also has hypotonia, hers is due to delayed myelination in her brain. After literally about 1000 test results of "normal", I think it has to do with my gastrointestinal issues & that I breastfed her not realizing I have malabsorption issues & did not give her B vitamin supplements. I also think she could have a problem metabolizing her B vitamins. This is after 8 months of reading nonstop.
I know you have other children, but I think until the doctors can give you an answer, start reading. And request copies to be sent to you every time your son gets a test result. I have found many times that while her doctors were happy to find that a certain enzyme/acid/etc was not elevated, sometimes they were low, indicating malnutrition.
One test they did on my daughter which might help is a chromosomal microarray. It tests for a few hundred things. When they did the initial chromosome test & karyotype, I thought that meant she had no chromosome problems. Turns out she doesn't, but I was shocked when they later said they wanted to do a chromosome test called a microarray. Even this one, I think, doesn't find all mosaicism(?), but I'm not positive. Anyway, it's great that you're noticing things like the eczema, etc. My daughter got eczema within a day of having her first piece of toast. I only remember because we had a birthday party that weekend. Two months later I made the connection, stopped all wheat products, and it went away. I wanted to keep her away from gluten, and dairy, just in case, until I figured out what was wrong. Also, I found out recently i have a high sensitivity to gluten & casein (two of my favorite things are breads & cheese). So I have cut out gluten myself (i was breastfeeding her so I'm sure some was getting through too), and am trying to eat less dairy.
You may want to check into Downs because they have some of the most info on hypotonia, not that your son could have it, it sounds like you're quite sure, but that they may have something dietary or supplements that help with the low tone in their kids. I don't think diet cures everything, but I'm finding more and more that it can be like taking a prescription that has no side effects. I'd suggest just find the things that you can control, and read about everything else and push your doctors to help you during the critical stages in his development.
A friend of mine also said once, "If all else fails, Johns Hopkins." I have heard only excellent stories, and we don't have a diagnosis for my daughter, & have found the kennedy krieger center. They work with kids with myelin problems, and we have been referred there for a consult. There is a doctor who'll be reviewing my daughter's test results.
The more you know, you'll be so much better off. Since your son has some characteristics you've noticed, you may find something quickly. I hope that it will be something your family can easily live with. Our Pedi Neurologist said she sees about 4 kids a year with problems like my daughter & some just grow out of it. I don't want to take that chance by just waiting, but it's good to know :). Good luck. "
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Reply #3 - 03/23/09  11:50pm
" Thank you very much. I will be looking into all of that. I have been reading up on things non stop, to the point where all the symptoms and syndromes start sounding exactly the same. His eczema has been with him since the day he was born, and absolutely nothing makes it go away. Since Dermatomyositis causes hypotonia & eczema, I may just bring it up to see what they think. But then again, as a concerned parent you can easily look at everything little thing and relate it to your child's condition. At this point, I'm going to try to be smart about narrowing down things, and hope that the doctors stay on top of it.

If not, I will look into a new hospital/doctor, as you suggested like Johns Hopkins. Either way, thanks again, and hopefully I can get some answers and get my baby on the right track. "
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Reply #4 - 03/24/09  12:46pm
" Hugs,
My daughter has hypotonia as well, we dont know the reason for her condition other than she has alot of other issues,, but her main weakness is core strenth and shoulder, hands, and legs, we do alot of exercices, and it has gotten better, she wears braces due to flat feet and now are seeing signs of a arch,

The Physical therapist can give you so many exercises to do at home, and it will affect her for a while, but with time she will get better, they tellme with age and therapy,,,

I can tellyou my daughter and I also have a deletion on Chromosome 4q35.2 but nothing has been said if that is the cause or not as she has autism, sensory , anxiety and mood disorder, some of what you said about not feeling boiling water, that sounds like possibly a sensory disorder that you can ask you dr about.

As Mommajamma said every time you havea test done get a result sent to you, that way you have records as well, I do this and can always look back on it etc,

Talk to your dr about a chromosome test to check for deletions,

hugs and good luck "
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Reply #5 - 03/24/09  1:23pm
" I also changed my mind very many times about what I thought. Many of her tests could mean very opposite things with the same symptoms. As long as your doctor is willing to help, that is a good sign. Sometimes they just don't know, and you may outrun them in the investigation. Some get insulted, others welcome the input (if you find one of these hold on to them :) Just don't let them slide. Finding out how long it takes to get a test result back, then calling every few days for results around the time they said it would be done, and then having another test or appt lined up when that test finishes. It's hard to keep a balance between crazy pushy mom and a completely trusting the doctor.
That's excellent that your son is very intellegent. The ophthalmologist told us as long as we have the eye contact, we know our kid is still with us. That gave some comfort while we were waiting for her to improve. I finally felt better when we were actually doing things. When she started therapy, that was good, but she didn't make a whole lot of progress. When we started vitamins, she started to improve. When we changed her diet, she improved more. These things make sense to me. When a baby has a problem, it's a problem. Waiting & seeing drives me crazy. If you can find the cause of the problem, then waiting and seeing how that problem manifests makes a lot more sense. Until then, it's a lot of work but worth it to find the cause. Even if you never find it, you'll know you did everything you could. We all have kids with different levels of problems, I really believe my kid needed the urgency I pushed for. Myelination slows way down as you age & I'd like her to have every last little fat cell she can make. :) "
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Reply #6 - 03/24/09  9:19pm
" Thanks again to both of you, as I have gotten some good help and advice here. I'm going to have all of these things looked into for sure. And I totally agree that when a baby has a problem, it is a problem regardless of how bad or mild it may be in comparison with other things. I can really see now how many babies with hypotonia are so different from each other, as the cause can be many different things and so the degree of disability is so different.

I will definitely be looking into the sensory and chromosome deletion.

Thanks again! "
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Reply #7 - 04/01/09  4:18pm
" My son is 5 an he has just been diagnosed with this condition, as far as im concerned he has had it since he was a baby as he was a late walker and has trouble with his bladder n bowels aswell which is all to do with weak muscle tone. all the doc can say is physio wont work . it will get better with age "
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Reply #8 - 04/19/09  9:59pm
" My son is 2 1/2 and we've known he has hypotonia for about a year. Our biggest struggle is that he still isn't really talking. His muscles in his mouth are very weak. My insurance will not cover speech therapy because hypotonia is a condition and not a diagnosis. However, I just found out that Johns Hopkins has a hypotonia center!! So, we are about to start the process of getting him evaluated by them. Their goal is to find the underlying cause of the hypotonia which would mean the world to us. So, you may want to google Johns Hopkins Hypotonia Center or call...maybe they can help you. Good luck! "
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Reply #9 - 04/19/09  11:13pm
" Well we had my son enrolled in a state program recently for those who fit income guidelines. We went through "Help Me Grow" and are working with them through the state for free as they are also paying for his PT and also there is another program that also provides PT and they have speech therapy as well. They also pay for thera togs if you need them. (at this point our son doesn't) Also, they have a wonderful nurse who has been calling me everyday setting up things so that I can take my kids to go get their medical card application started and then they provide complete testing, every test you could think of, that can find what's wrong with my boy. She agreed with me that although hypotonia is a diagnosis, it's not the source of what's going on and they have vowed to do everything under the sun to get the official diagnosis. They did tell me it could be several months to go through all of this, but I was so relieved to get some help and I truly believe all of these people are very genuine and want to help.

So if anyone needs help, please look into state programs. If you make about 35,000 a year or less (sometimes more depending on states) you can get complete help for everything that will provide a better life for your child! They are also going to do testing on my 6 year old to see if he has anything going on with him just to make sure. So not only are we going to get the PT once a week at our home, but we will also get it about 2 times a month at an actual building where they have equipment, etc, all free. I'm pretty sure every state has these programs. Our pediatrician is the one who got us in touch with them, so if anyone is in a similar situation you should definitely check it out.

**On a side note..after getting some tips from the PT my son is already showing great improvement as he, even though still supported, is sitting better and with a straight back rather than a rounded one. He can also sit a few seconds unsupported and is putting most of his weight on his legs and stands pretty well for much longer periods of time. They still say his shoulders & arms need a-lot of work, but they were amazed with his progress. "
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Reply #10 - 04/25/09  12:19pm
" Really glad things are working out for you hun,, So glad for the progres... "

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