Hypotonia in children - Page 2

[heartmama]

coreybreeze you are not hijacking at all! This is exactly the kind of discussion I hoped to encourage. I didn't mean to say your dd doesn't have hypotonia--I was just thinking out loud, wondering what it could be, since my very limited knowledge of hypotonia has mainly been with BCH (benign congenital hypotonia).

I have questions about metabolic disorders. If anyone knowledgeable doesn't mind being pm'd, I can go into more detail about ds to see if any of his other little odd symptoms add up to anything in your mind. Let me know here if you are someone who wants to read a lot of boring stuff in pm about my ds

[sbgrace]

I'm happy to "listen". Our geneticist told us benign hypotonia doesn't exist; we just may not have the technology yet to know the underlying issue. And that's changing at a fast pace.
http://www.mothering.com/discussions...d.php?t=734501 Here is a thread I made a while back about signs that metabolic issues might be behind special needs. It's very true the hypotonia and metabolics often go together.

[my3peanuts]

Feel free to pm me. My son has an unspecified metabolic disorder and mitochondrial dysfunction.

[bits and bobs]

Oh wow, finally a group of people who get this!

DS is 6.5 and has hypotonia.

He crawled at 13 months, walked at 20 months. He was referred to PT at age 5 where he was diagnosd. For him what we really deal with is fatigue related to his hyptonia. He has trouble with pencil-holding and coordination activities. Getting the diagnosis helped me so much. I could now understand the massive tantrums that came when he was tired, or the wanting to be home all the time on weekends.

His PT lady says hyptonia does not diappear, you just get to a certain level of ability which can be helped by therapy but you'll never be 'equal' to someone without hyptonia.

Gosh, I have sooo much to add but am so happy to find a group who live it.

My question-does hyptonia have an impact on what yr child eats? DS eats reasonably widely but prefers soft foods. I am about to start him in a food group for older kids with a OT and the OT wonders if the hypotonia is linked to the soft foods issue.

Bits

[bits and bobs]

My biggest concern is how she'll manage a long school day. She just cannot possibly do it. I'm planning to fight for a shortened day. How does your son manage his school day?

MamatoHaleybug

I know!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Where we are DS did kindergarten which was 2 days/wk for a year; then pre-primary 5 days/wk; now he's in grade 1 full time. The transistion from kindy for 2 days to pre-primary for 5 days a week was brutal. Id say that every 2-3 weeks I gave him a day off on a Wednesday so he could rest. The teachers were fine with that.

Now in grade 1 schooling is complusory and we have had some trouble with him being tired. I have talked to the teacher and she knows what his issues are, we do NO after school activities, we have very quiet weekends. He has not missed a day yet, which is amazing. He is much stronger than he was a year ago, so you may be surpirsed-I certainly have been. I also drive him to/from school if it's hot or I know he's had a big day, even though we usually walk.

Does that help at all?!

[FancyD]

Originally Posted by bits and bobs

My question-does hyptonia have an impact on what yr child eats? DS eats reasonably widely but prefers soft foods. I am about to start him in a food group for older kids with a OT and the OT wonders if the hypotonia is linked to the soft foods issue.

My son much prefers soft food, or else it has to be whizzed in the food processor. There are a lot of textures that he won't eat.

[Roar]

Originally Posted by heartmama

I am intrigued by the idea of an underlying disorder. I feel scared just thinking of that

I know it can be scary. It is good to know though. And, it is worth pursuing in case there is something that might make him feel better. Have you tried any kind of supplements at all? We found EFAs helped our kid quite a bit.

[heartmama]

I know it can be scary. It is good to know though. And, it is worth pursuing in case there is something that might make him feel better. Have you tried any kind of supplements at all? We found EFAs helped our kid quite a bit.

I pm'ed someone here and the list they gave me of mitochondrial disorder symptoms took my breath away--ds has them in every single category. I am just stunned. What if he has an underlying disorder? This has never seriously crossed my mind. Everything. Everything. Everything. has been explained by his doctors as part of his heart problem. And maybe it is all related to that. But apparently heart disorders can result from mitochondrial disorders?! I feel dizzy just thinking that they have been wrong for this long.

I don't know where to start. What kind of doctor tests for a mitochondrial disorder? A geneticist? Internal medicine?

[MetasMom]

As the others have already mentioned, muscular hypotonia is a symptom and not a diagnosis. My daughter is developmentally delayed due to mus. hypotonia. She also has the hyperflexibility.
And BTW, I have it, too. Ballet taught me to discipline my body. I am a little clumsy but very quick.

[heartmama]

Regarding school and food questions:

We homeschooled for many reasons, but a big one was that if you know ds, it's hard to even picturing him navigating an 8 hour school day 5 days a week. He would drop from exhaustion.

He never had any real food issues, as an older child. As a baby his latch was so weak, he lost weight nursing, and ended up weaing very early. A long sad upsetting story

[my3peanuts]

Originally Posted by heartmama

I pm'ed someone here and the list they gave me of mitochondrial disorder symptoms took my breath away--ds has them in every single category. I am just stunned. What if he has an underlying disorder? This has never seriously crossed my mind. Everything. Everything. Everything. has been explained by his doctors as part of his heart problem. And maybe it is all related to that. But apparently heart disorders can result from mitochondrial disorders?! I feel dizzy just thinking that they have been wrong for this long.

I don't know where to start. What kind of doctor tests for a mitochondrial disorder? A geneticist? Internal medicine?

My son has mitochondrial dysfunction and the thing is, you have to find a good, metabolic specialized that knows what they're talking about! We've been to very prominent doctors who unfortunately knew nothing about Mito or Metabolic DIsorders. It took us finding the right one before we started getting some answers.

Heartmama, where do you live? There is a very good metabolic specialist in Houston. There are also good doctors in Cleveland which is where we've been seen.

Because the brain and muscles are the most energy hungry parts of the body they are typically the first things affected by mitochondrial disorders. The heart is a large muscle so it can easily be affected. It's hard to know what's from what really and it might not be a mitochondrial disorder. Maybe it's a metabolic disorder. I do believe though that hypotonia in and of itself really does not relate to a heart condition as I would see it. I don't know what other symptoms your son has. Would you mind sharing?

Typically you start thinking of a Mitochondrial Disorder if you have an atypical presentation of a specific syndrome or disease and if you have more than 3 organ systems involved. HTH.

[coreybreeze]

Originally Posted by bits and bobs

My question-does hyptonia have an impact on what yr child eats? DS eats reasonably widely but prefers soft foods. I am about to start him in a food group for older kids with a OT and the OT wonders if the hypotonia is linked to the soft foods issue.

Bits

Libby has a g-tube now, she's just flat out not a good eater and a HORRIBLE drinker, they're thinking due to her hypotonia. She was pretty much nursing exclusively (I tried giving her some things at about 6 months, never really was very interested) until a year old when she started drastically losing weight and had way fewer wet dipes. Her oral-motor control is so uncoordinated that she couldn't nurse effectively. We did some high-tech weighing before and after and she was getting like, a quarter of an ounce after 20 mins of nursing. She still nurses for comfort, but not nutrition.

She does eat some foods, but things with a really thin consistency throw her for a loop. Its like she can't control it in her mouth if it doesn't have some substance to it, KWIM?

[coreybreeze]

Originally Posted by my3peanuts

My son has mitochondrial dysfunction and the thing is, you have to find a good, metabolic specialized that knows what they're talking about! We've been to very prominent doctors who unfortunately knew nothing about Mito or Metabolic DIsorders. It took us finding the right one before we started getting some answers.

How did you guys end up getting dx'ed with mito dysfunction? Did you find something concrete in a lab workup, or was it more of a "if the shoe fits" type of a thing? If you don't mind sharing, of course.

[bits and bobs]

Coreybreeze-I read yr whole story yesterday abt yr precious girl. I am so frustrated for you. It's just like being stuck in a whirlpool and not being able to get to the side. She is darn gorgeous btw!

As a baby his latch was so weak

Oh Heart Mama. This was my story too. DS also had jaundice and was not able to even latch on till he was 5 days old. He would pop on and off all the time. It's only now, 6 years later that I wonder if this was due to hypotonia rather than my incompetence as a breast feeder.

My son much prefers soft food

Fancy-yep! I think DS disguises it well because he'll eat pasta, noodles, rice and anything that I can throw in with those BUT put a roast dinner in front of him...no thanks!

Bits

[sbgrace]

Originally Posted by Roar

I know it can be scary. It is good to know though. And, it is worth pursuing in case there is something that might make him feel better. Have you tried any kind of supplements at all? We found EFAs helped our kid quite a bit.

I soooo agree it is worth pursuing. In some of these conditions treatments can do wonders for kids. EFA's though; depending on the issues (fatty acid disorders, mitochondrial disorder) fish oil and vegetable oils particularly can be problem fats. It is for my son. I think something like a DHA capsule is ok. But if there is question about metabolic/mito issues fat can be the underlying issue. That said, we right now are back to giving Andrew some fish oil. But his other fats of that type are severely limited in his diet. And we may take the fish back out...we'll see.

HeartMama, I pm'd you. I do think you've got some investigating someone should do (someone good as Nicole mentioned) and I think your looking is going to be broader than this one area. It will be ok. It really will. Nicole was saying that mitochondrial (and many metabolic issues) can damage the heart but not cause a malformation.

CoreyBreeze, we went to Cleveland to see a mito specialist. I had found the mitochondrial UMDF site online and I knew my son fit the profile though I hoped I was wrong. Anyway, the did a urine and blood work up while we were there that came back with abnormalities showing problems with fatty acid (fat) metabolism. He was started on a medication called carnitor immediately because his carnitine levels were extremely deficient and he had some nasty stuff built up in his system. They did a heart echo to look for heart damage (none) and ordered a skin biopsy. His skin biopsy results (sent to various places for various things) showed again that he can't metabolize fat and has problems with what is called OXPHOS. But no specific known fatty acid disorder. His symptoms, skin biopsy ruling out two other possibilities, and urine mitochondrial markers led to his "diagnosis" which is mitochondrial dysfunction either primary (the main problem) or secondary to an unkown disorder of fatty acid metabolism. Do I care that it isn't exactly known? Nope..because he's doing so well with diet changes and the supplement/medication protocol for mitochondrial disorder. But to get a mito diagnosis they have to do a muscle biopsy (which at this time we don't plan to do) that finds mitochondrial issues. Technically they have to find a mutation in the DNA I think to call it the primary diagnosis. But most of the DNA mutations for mitochondrial are unkown right now. Did that help?
The key is seeing someone who knows mito..there are only a few of those unfortunately. Houston, Cleveland, I think Oregon, Boston, Atlanta, Indianapolis are the ones I know. But likely there are more.

[Smithie]

"His PT lady says hyptonia does not diappear, you just get to a certain level of ability which can be helped by therapy but you'll never be 'equal' to someone without hyptonia."


According to two OTs so far, my ds seems to have mild hypotonia - late crawler, late walker, now has fine motor delays. Nothing like as serious as what's being described by some mamas here, but honestly, I thought the therapy would "cure" him and the muscles in question would get stronger and his control would get better and he would no longer be hypotonic. I feel like an idiot. A heartbroken idiot.

Of course, they may be wrong. He is very strong (strong latch as a baby, strong leg and arm muscles now), it's control of movement that seems to be the issue. I'll try to nail down the current OT on exactly what she thinks hypotonia is and what the prognosis looks like. Thanks for this thread!

[bits and bobs]

Originally Posted by Smithie

"His PT lady says hyptonia does not diappear, you just get to a certain level of ability which can be helped by therapy but you'll never be 'equal' to someone without hyptonia."


According to two OTs so far, my ds seems to have mild hypotonia - late crawler, late walker, now has fine motor delays. Nothing like as serious as what's being described by some mamas here, but honestly, I thought the therapy would "cure" him and the muscles in question would get stronger and his control would get better and he would no longer be hypotonic. I feel like an idiot. A heartbroken idiot.

Of course, they may be wrong. He is very strong (strong latch as a baby, strong leg and arm muscles now), it's control of movement that seems to be the issue. I'll try to nail down the current OT on exactly what she thinks hypotonia is and what the prognosis looks like. Thanks for this thread!

I'm so sorry to have hurt you mama What I can tell you is his PT is unbelievably thrilled with his progress. So it shows that these kids can make improvements but that they may not be Olympic athletes. I was very very confronted when she first told me this too. When DS is sad abt his gross motor skills I remind him that everyone is good at different things. As yr child gets older they will excel in something and that is what you can latch onto to encourage.

Bits

[FancyD]

Originally Posted by Smithie

I feel like an idiot. A heartbroken idiot.

I've had days like that, too. I never thought that D might not be able to handle full-time schooling. I'll cry along with you.

[sbgrace]

Originally Posted by Smithie

According to two OTs so far, my ds seems to have mild hypotonia - late crawler, late walker, now has fine motor delays. Nothing like as serious as what's being described by some mamas here, but honestly, I thought the therapy would "cure" him and the muscles in question would get stronger and his control would get better and he would no longer be hypotonic. I feel like an idiot. A heartbroken idiot.

While I too think it's unlikely that mildly hypotonic kid is going to be "cured" it doesn't have to hold a child back. I for example am mildy hypotonic. I didn't even know that (though it makes sense now that I know hypotonia) until my son's PT's and OT's started pointing it out to me. I functioned just fine and though like many hypontonic people my coordination/motor planning and strength weren't great I was good at certan sports even--like swimming. So it can be ok. As an aside, outside of treating his metabolic stuff the absolute best thing for my son's tone was horse riding. It does great for the core/trunk muscle strength particularly. And many kids love it. We did hypotherapy and then therapuetic riding.

[coreybreeze]

I just want to say thank you for starting this thread! I am fascinated by the similarities (and differences too) of our little ones.