mildly hypotonic toddler SO TIRED

[sheandaru]

14-month-old ds started walking independently last week. Yay!

However, there are many times throughout the day when he just seems to get so tired he quits. Sometimes he drops down to his bottom, rolls to the floor and lays there for a minute (he does have myoclonic & drop seizure history). He gets back up after his rest and then gets going again.

By the end of the day, he is so, so tired, though, and is only really content if someone is carrying him around. If we put him down, he refuses to walk/crawl, and just cries. He wants to be awake, just not active.

We haven't started PT yet (our first appt. is in July), so is there anything I can do to help him? I hate seeing him so frustrated when his body doesn't want to do the work anymore.

[sbgrace]

What is his underlying diagnosis and does it involve fatigue?

[sheandaru]

Originally Posted by sbgrace

What is his underlying diagnosis and does it involve fatigue?

Unfortunately, we don't have an official diagnosis of anything other than hypotonia.

His neuro wants to wait until maybe more symptoms arise to do any further testing. So far we've had a clean MRI & outpatient EEG, but haven't done any genetic testing or metabolic testing.

[marge234]

So your neuro has ruled out sensory issues? My slightly low tone baby is being treated for motor planning problems. He was initially seen by a PT--and made progress--but now it's clear he's got sensory issues, not just physical difficulties. We're starting OT and doing floor-time to help him. I'm just learning about all this and it may not be applicable to your situation. I'm just answering because we were told the sooner you start addressing sensory issues the better.

[KCMichigan]

Originally Posted by marge234

So your neuro has ruled out sensory issues? My slightly low tone baby is being treated for motor planning problems. He was initially seen by a PT--and made progress--but now it's clear he's got sensory issues, not just physical difficulties. We're starting OT and doing floor-time to help him. I'm just learning about all this and it may not be applicable to your situation. I'm just answering because we were told the sooner you start addressing sensory issues the better.

Ditto this.

One of my DDs was dx with CP around 16 months when she was barely cruising. She also had a hypotonic trunk and sat very slumpy. She did and still does fatigue much quicker than her twins sisters.

As she got older she had more sensory issues, even as her strength grew and she got more coordinated---some sensory stuff fatiugued her as much as the physical activity.

Now at 4.5- her gross motor skill are only slightly delayed (though she still fatigues VERY quickly and has poor posture when tired) she very much struggles with sensory issues.

She has had PT and OT (as a toddler/preschooler) through our insurance and now at 4.5 currently gets both through the school system.

She needs a daily 'rest' time still and sometimes naps---even after sleeping 11-12 hrs a night. (compared to her twin who never naps and needs 10-11 hrs of sleep).

[sheandaru]

He hasn't mentioned sensory issues, but since we have had a lot of feeding problems (lengthy nursing sessions, reflux, gagging when starting solids, etc), I do think there may be something to be said about it.

DS slumps a lot when he's fatigued, and I am honestly starting to think I will mention mild CP during our next visit. I know it's early to tell because he *just* started walking, but since he has always been so, so clumsy even while crawling, I think there is more to it than just the "hypotonia" our neuro dxed him with. He sways a lot while walking and sometimes holds one of his arms stiffly behind him.

With the clean MRI, though, is CP still an option?

[Kathy2579]

Originally Posted by sheandaru

With the clean MRI, though, is CP still an option?

I think CP is still an option... my 20 month old is having almost the same issues even down to eat and sleeping from 6pm to 7am each night with an hour nap.

He will get so tired that though he can walk he would rather crawl or lay down to do something on he floor or be carried

I have not diagnosis at all.

What I find that helps is starting at 4:30 start dinner, bath, 30 min of TV, books, and then bed.. It takes us about and hour and 1/2 or about til 6pm to get all that down. It is not allot of walking or crawling. This may sound early to eat but if he is to tired he won't eat at all.

DS only get 30 min of TV a home cause of my work schedule. This allows for low key activites. He is cranky but it is a little less since less movement is involved

YEAH for walking !!!

[sbgrace]

Ok.

My increasingly fatigued and hypotonic child had a metabolic issue affecting his mitochondrial function. He got sicker and sicker (and more and more fatigued) until we finally figured out it might be metabolic. He was 3.5.

You might look at the warning signs and see if it fits especially since he also has seizures. I don't know much about seizures related to mito but in the back of my mind his seizure type is found in mito. I made a link since it took us so long to figure out why my son's "unrelated" issues were all actually connected and get him treatment.

http://www.mothering.com/discussions...d.php?t=734501

Please let me know if you have any questions or I can help.

[homemademomma]

My daughter is ataxic, and she fatigues very easily. She is four now and getting way to big for me to carry all the time. We keep a stroller in the car and try to have it on hand for long walks.

[sheandaru]

Originally Posted by sbgrace

Ok.

My increasingly fatigued and hypotonic child had a metabolic issue affecting his mitochondrial function. He got sicker and sicker (and more and more fatigued) until we finally figured out it might be metabolic. He was 3.5.

You might look at the warning signs and see if it fits especially since he also has seizures. I don't know much about seizures related to mito but in the back of my mind his seizure type is found in mito. I made a link since it took us so long to figure out why my son's "unrelated" issues were all actually connected and get him treatment.

http://www.mothering.com/discussions...d.php?t=734501

Please let me know if you have any questions or I can help.

Thanks for this link. I do see a lot of Timothy's problems in the list of mito symptoms, especially this:

12. Particular to mitochondrial (more information below): three areas of health and/or development are affected in a child. (example, child has constipation, developmental delay, muscle weakness

)

During his first year, we never had any severe constipation issues, but bowel movements were extremely infrequent and often difficult despite the fact that we were exclusively bfing. He is only slightly delayed, but I can definitely say he isn't cognitively where my "normal" children were at this age.

My hope is that if his PT eval doesn't give us any answers, I'll push for genetic & metabolic testing.

[sbgrace]

Hypotonia, seizures, fatigue, dev. delay, possible GI...more than enough for looking into this IMO. Three things is enough. Heck, fatigue and hypotonis is enough to me.

The thing about metabolics is that there are treatments. And damage occurs over time.

And the thing about mitochondrial issues are that it's hard to get to the people who know mito enough to evaluate and treat. I am happy to give you information about that if/when you want. You might pm or email me so I don't miss a reply/post/etc.

At 14 months all I knew was my son had mild hypotonia and GI issues (severe reflux and failure to thrive in his case primarily). Beginning around 18 months to two years my son got increasingly fatigued and began losing developmental skills. Then from two to three he got even sicker. We got the point that he was basically sleeping his life away and rarely "with it" even when awake. At 3.5 I found information about mito online, we got to a specialist and finally we were on our way to answers and help. Treatment has made a world of difference for my son. We gained the lost skills back very quickly (though that doesn't always happen). That said, we've had a lot of ground to make up because when he got really sick he basically missed all the developmental stuff from that time period. Had I known my son had mito and known what not to do for anesthesia at age 20 months (and some other choices made in that time period with diet and medication) I don't know that my son would have had the damage he did. He's never recovered some of the declined areas during that time period/I assume the damage he incurred in his mitochondria in that time period is permanent and it makes me sad even as I feel fortunate the impacts weren't nearly as bad as they could have been for him.

There are also other routes you can go for looking at possible mitochondrial issues. I don't know that I would with seizure involvement though. I think I'd want hard answers.

All my thoughts which, of course, are clouded by our experiences and may not apply to you at all.

If you see any declines in energy (especially) or other areas you'll want to act fast.

[Hopesmommy]

I was going to suggest looking into meta/mito issues as well.

Two of my children have/had those issues, and one of them died because she got sick and they didn't know how to treat her at the hospital. If it's metabolic, there is a protocol that needs to be following regarding emergencies and anesthesia. I don't want to alarm you, I just think that testing is important if such a disease is a possibility.

[APToddlerMama]

subbing.. no time now but will write later as my son was in a very similar situation.

[sbgrace]

I'm going to caution you to be very careful with any diet changes in a possible metabolic/mito kid. Watch for negative changes and make sure you're not too fat (or protein for that matter, but especially fat) heavy. Going gfcf and then another diet was one of the big factors in my child's decline. Do any diet changes with awareness of possibilities.

[APToddlerMama]

I have a two year old son who has gross motor and speech delays, SPD, hypotonia, and who knows what else. We are still trying to figure out if he is having some sort of seizure, and I don't really think he is, but his neurologist and developmental pediatrician are not convinced so we'll be doing more testing.

Anyhow, as sbgrace said, if this is a metabolic issue, you really want to find that out because that would be *very* serious. Diet changes could be problematic in that case so you'd want to rule metabolic issues out first.

In my son's case, however, I had posted a few months back a post really similar to yours about how lethargic he was. What ended up happening was that we had gone GFCF for about four months and saw some gains with mood, but he was still absolutely exhausted 24/7 and also would wake up in the middle of the night every single night. Additionally, everything he ate came out basically whole in his stool (and I mean EVERYTHING). He had some allergy testing done and we also removed those foods from his diet. No change in energy level. Finally something clicked and we took Rice Milk out of his diet (which has sunflower oil which we think he has a problem with), and very quickly his energy level changed dramatically and he also started sleeping much better (for him--which is still pretty bad). So, in our case we were lucky enough to see some really wonderful changes with finally figuring out problematic foods. In fact, he just was re-evaled for speech and has gained six months of skills within the past two months in which we finally figured out this diet stuff.

Again, please be cautious with diet until you know for sure that there is/isn't a metabolic issue, but if/when you do find that out, I'd take a look at diet as well. Good luck!

[sheandaru]

We haven't done much with his diet other that just *getting* him to eat. He refused solids (and purees) for so long that up until I think a month or so ago, I wasn't sure if he would ever eat table foods. He really likes the Yo Baby yogurt & cereal purees and will beg bites of other things that we're eating. Mostly, though, he still nurses a LOT (and who knows how much during the night). So like, he looks like he's healthy with all his little fat rolls & cankles, but if you look closer, he's all slumpy. His neuro, upon the first exam, was like, "He's just doughy isn't he?"

Anyhoo. Metabolic kinda scares me because with his three older brothers, meal planning seems like it would be a nightmare.

[sbgrace]

Originally Posted by sheandaru

We haven't done much with his diet other that just *getting* him to eat. He refused solids (and purees) for so long that up until I think a month or so ago, I wasn't sure if he would ever eat table foods. He really likes the Yo Baby yogurt & cereal purees and will beg bites of other things that we're eating. Mostly, though, he still nurses a LOT (and who knows how much during the night). So like, he looks like he's healthy with all his little fat rolls & cankles, but if you look closer, he's all slumpy. His neuro, upon the first exam, was like, "He's just doughy isn't he?"

Anyhoo. Metabolic kinda scares me because with his three older brothers, meal planning seems like it would be a nightmare.

He's nursing at night--that's good--that's keeping blood sugar up. My metabolic guy wanted to eat frequently all night and I had no clue why. I think the stopping of that was part of his decline.

Metabolic is more scary when it's unkown and not treated! As for meal planning--Andrew's metabolic stuff didn't change that much/his twin's allergies were a nightmare! In Andrew's case we needed to go lower fat. That doesn't mean no fat of course and other family members can be free to slather butter on potatoes/rolls/ and pour fatty salad dressing on and whatever. In reality it's a percent of fat issue so if his dinner is fatty but breakfast isn't it all averages out. At any rate, you want to know if it's metabolics (hoping it isn't) because you can focus on preventing damage.