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Low stamina in child formerly diagnosed with benign hypotonia--what to ask about at dr visit?

post #1 of 8
Thread Starter 
DS3 (almost 4) created quite a bit of concern in his doctor when he was a baby. He was failure to thrive, partly due to tongue tie and low supply but partly for unknown reasons, and quite floppy and hypotonic. He had an MRI, nerve conduction testing, and blood testing to measure CPK. All were normal. He was in EI physical therapy from about 4 months-12 months, when he was discharged because he had made huge progress and appeared generally on track. He retained head lag for a long time and was not able to to sit unsupported till about 9 months; however, he crawled at 11 months and walked at 13. He walks, jumps, runs, etc with no issues. However, he is still "floppy." Concerningly to me, he cannot sit up from prone without use of his hands, and still shows some head lag when pulled to sitting.

He seemed pretty darn normal for a long time in almost all ways but I am increasingly concerned about his tendency to be low-energy and to complain of being tired. He dropped his nap at 3.5 because he was not able to fall asleep till 9 or 9:30 if he napped. He now sleeps about 7 pm to 7 am. At worst, he goes to sleep at 7:30 and wakes up at 6:15. He always falls asleep within 5-10 min when put to bed.

He looked "peaked" to me quite a bit and will often lie on the floor and play. At the same time, he does have plenty of times when he is energetic and running around, but most 3yos I know do not sadly say "I'm tired" and lie on the floor several times a day. His endurance on easy walks is not good--I would say the most he can walk without complaining is half a mile. He is NOT a generally whiny child.

I am taking him to the ped in a few weeks. I want him tested for anemia (we are vegetarians, though he eats plenty of beans and other high-iron food). Other than that I am not sure what to ask for. Wonder if anyone has any thoughts on what we might want to pursue. Something else metabolic? Or perhaps this is just a picture of a child who has benign hypotonia? I am not even sure that diagnosis is still on his charts, BTW.

He eats very well--huge amounts, I would say. He is 90th% for height and weight (so much for FTT!) He has no other delays at all--everything is more than on track developmentally.

I should mention that there are two other factor that might be playing in:

1) He is fearful and has nightmares often--at least 2x a week. However, when he has one he is very quickly soothed back to sleep. But he has been worried about monsters on and off--sometimes very worried. He may be lying in bed awake, though he says he is not. We no longer cosleep and do not want to go back to it.

2) He has mild periodic asthma. He is not on any daily controller medicines. It seems to only pop up when he gets very sick with a cold, and is easily controlled with albuterol, but it's possible it is impacting his breathing and I don't know about it.
post #2 of 8

Maybe get him tested for food allergies. We are in the process of eliminating certain foods to see if that helps with my son's low energy and anxiety. Dairy and Wheat can really aggravate asthma and anxiety. 

post #3 of 8
Quote:
Originally Posted by loraxc View Post


He looked "peaked" to me quite a bit and will often lie on the floor and play. At the same time, he does have plenty of times when he is energetic and running around, but most 3yos I know do not sadly say "I'm tired" and lie on the floor several times a day. His endurance on easy walks is not good--I would say the most he can walk without complaining is half a mile. He is NOT a generally whiny child.
 

I am taking him to the ped in a few weeks. I want him tested for anemia (we are vegetarians, though he eats plenty of beans and other high-iron food). Other than that I am not sure what to ask for. Wonder if anyone has any thoughts on what we might want to pursue. Something else metabolic? Or perhaps this is just a picture of a child who has benign hypotonia? I am not even sure that diagnosis is still on his charts, BTW.
He eats very well--huge amounts, I would say. He is 90th% for height and weight (so much for FTT!) He has no other delays at all--everything is more than on track developmentally.
I should mention that there are two other factor that might be playing in:
1) He is fearful and has nightmares often--at least 2x a week. However, when he has one he is very quickly soothed back to sleep. But he has been worried about monsters on and off--sometimes very worried. He may be lying in bed awake, though he says he is not. We no longer cosleep and do not want to go back to it.
2) He has mild periodic asthma. He is not on any daily controller medicines. It seems to only pop up when he gets very sick with a cold, and is easily controlled with albuterol, but it's possible it is impacting his breathing and I don't know about it.


This is a snapshot of my DD. She had gross motor delays as a toddler/preschooler, etc. Actually her hypotonia was so pronounced she had a Cerebral Palsy dx. Though now the PEDI says she would not qualify, but continues to have persistant low muscle tone.

 

She had PT & OT off/on for 2 years.

 

She is not anemic and also has mild asthma. She looks weary by 4 pm and PUTS HERSELF TO BED, she often says 'I'm tired', I'm sleepy, etc. Napped until age 5. Goes to bed at 7/8 and up at 6/7.

 

No food allergies (been tested).

 

Ahead academically and fine motorwise, mildly delayed social and gross motor skills.

 

The conculsion is that DD uses so much energy moving about that she tires out quickly when compensating for the hypotonia...she sleeps 11-12 hours still at 6, but runs/jumps/etc.  She does have a loose PDD_NOS dx as well and some sensory stuff. She also has a vivid imagination and 'thinks' alot, which can trigger sensory overload and fatigue.

 

She still has trouble sitting 'free' (no back support) with out looking slumpy and struggles to walk distances (long walks).

 

 

PEDI said keep an eye on it, but no immediate concerns.

post #4 of 8
Thread Starter 
Thanks, KC--that is quite reassuring to me, actually. This makes sense: "The conculsion is that DD uses so much energy moving about that she tires out quickly when compensating for the hypotonia." Maybe it is just sort of a side effect. DH and I both were so traumautized by all the concern about him when he was an infant that I still worry there is something...awful...that we might be missing.

I have considered food or environmental allergies, but the science on testing little kids is in such flux that I figured we would wait.
post #5 of 8
I came across your post looking for ideas to help my DS. I just wanted to suggest that you look up congenital myasthenia. It took 4 years for multiple doctors to figure out that all the problems are just one treatable problem. The key for us was a droopy eyelid. It is not always a sign but most people with cm have it.
post #6 of 8

loraxc, it sounds like there is more going on, but I would def ask for the Dr to check iron and make sure it includes the Ferritin levels (some basic tests won't look at ferritin which is the body's storage of iron). I say this only because our son was having a lot of stamina issues and, after a simple iron test came back fine, I pushed for a complete CBC and metabolic panel and they complied only because I forced the issue.

 

His ferritin came back dangerously low!  I also asked for vit d and B and his D came back somewhat low as well.

 

I hope you get some answers!

post #7 of 8

My 9-year-old is similar. Benign hypotonia with fatigue, particularly between meals. Can't walk very far.  I appreciate the other suggestions here. I will look into Ferritin.

 

Have you investigated mitochondrial dysfunction? That seems to result in energy regulation issues. We've looked into it a little bit but it seems like not many physicians are knowledgeable about it.  

 

There is some concern among some doctors that the manifestation of autistic-like behavior in a child with low muscle tone is really a manifestation of mito.

 

Some info about all this is here:  http://www.umdf.org

 

Good luck! I hope answers come.

post #8 of 8

Also, there is a doctor who's now in Toronto who founded a center for Hypotonia at Johns Hopkins. Unfortunately, the hypotonia center had to closed when he moved. But the doctor seems very knowledgeable about hypotonia, and I was told by his former assistant that many of the geneticists who remained at Hopkins are familiar with his work and with his approach.

 

Here is his contact info:

Dr. Ronald Cohn, MD

http://www.sickkids.ca/AboutSickKids/Directory/People/C/Dr-Ronald-Cohn.html

 

This is an out-of-date link that discusses the now-closed hypotonia center at Hopkins but it lists a phone number and perhaps someone there would be able to help you with a referral.

http://www.hopkinschildrens.org/Treating-Hypotonia.aspx

 

We're in the process of trying to get in to see Dr. Cohn. I've he really "gets" hypotonia.

 

Good luck to you.

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