Bizarre cycling of energy levels

[jeninwpg]

Hi all,

A bit of background first. My 2.9 yr old son has mild apraxia of speech along with hypotonia and some mild sensory issues. No sign of global delay.

Lately (in the last month) his energy levels have started to vary widely. In the mornings when he wakes up he is extremely irritable and, what scares me more, very unresponsive - staring off into space, uninterested in playing or knowing where I am, etc. It gets somewhat better until he has his nap after lunch. Then when he wakes up we go through the irritable stage again. By evening he is back to the child I am used to - engaged with us, running around, interested in what we are doing, talking lots, showing us stuff and always wanting to help.

Has anyone ever experienced anything like this with a child who has sensory issues and/or motor planning? At the same time that this happened my son suddenly started having trouble falling asleep and is now waking up during the night for the first time in a very very long time.

~Jen

[sbgrace]

My son had issues like that. For him the irritability was low blood sugar and I'm wondering about that given the timing (after going without food/sleeping). Try getting some juice in him as soon as he wakes and see if that short circuits the irritability. If it does give him a blood sugar stabilizing snack before sleep. Feed him as soon as he wakes. We have a spoon of applesauce as soon as my child gets up.

Energy variations are common with mitochondrial stuff. I'll link information I put together given his low tone and other issues. http://www.mothering.com/discussions...d.php?t=734501 This was my son's underlying thing.

[jeninwpg]

Thanks Rachelle. A mitochondrial disorder is something I've come across in my reading and I've wondered about it. Unfortunately I've been waiting months to see a specialist and I still don't have an appointment. I'm going to try my hardest to get bumped up on the list but I don't know how successful I'll be.

Do you (or others?) have any suggestions for a good blood sugar stabilizing snack before bed? I will try the applesauce tomorrow morning to see if that helps.

~Jen

[jeninwpg]

One more thing, in the link you provided you mentioned that now that your son is receiving proper treatment, he is doing much better. From the little bit that I've read I can't find anything that talks about treatment for this condition. Is your son on medication for this?

Thanks so much for the quick reply.

[sbgrace]

If you're suspecting mitochondrial there are only a few doctors who are good to see. Most doctors (even metabolics) are way behind the curve in this area as it's relatively new. I mean the research and understanding in this area is new, not the condition. If you need names let me know. There are alternative ways to handle this too though it wouldn't be formal metabolic testing or diagnosis.

If you start treatment any testing won't be accurate. But I'm not at all sure a mildly affected child needs formal testing--at least until they have better techniques and treatments. My son did all the initial blood and urine tests listed on the umdf site plus echo and skin biopsy. Up until the skin biopsy we didn't have any more diagnostic information than we did with a metametrix urine profile. The metametrix was of course far less invasive. Skin biopsy did give us more information but didn't change treatment recommendations. So we still ended up in the same place treatment wise but now my son has a medical record following him with stuff like "muscle myopathy" on it. I don't regret the testing we did with him at all. But there are other options. I don't know if any of that made sense. If you're seeing metabolics (someone good) you wouldn't want to start treating before you had testing.

The treatment to start is pretty standard.

http://www.umdf.org/site/c.otJVJ7MMI...aminsCofactors The first tier supplements listed here are the standard treatments at this time. If you have a cooperative doctor to prescribe carnitor you can do this w/out testing. Carnitor is very safe so most doctors would do this if informed of the possible link w/low tone I suspect. You could also do acyl-carnitine or another over the counter carnitine supplement instead. The form of coq10 matters. All the mito doctors I know of say to use Tischon brand coq10 which is the kind being used in clinical trials. It's much better absorbed and used. Epic4Health sells it. They will give a mito discount for the asking/no formal diagnosis needed (I asked). Any riboflavin is fine. Most kids won't take it/tastes bad. My child is super tolerant of yucky meds so he does it.

The only thing they recommend for stabilizing overnight is uncooked cornstarch. That was not going to work here. I read Agave Nectar might be good for stabilizing but haven't explored that. We do a complex carb with protein and a little fat before bed. That can't stabilize overnight and my son has blood sugar issues in the morning. But he over-produces ketones which, while hard on the body, is protective. For naps you can probably stabilize w/ a good protein/complex carb snack before.

[KimPM]

Originally Posted by jeninwpg

Thanks Rachelle. A mitochondrial disorder is something I've come across in my reading and I've wondered about it. Unfortunately I've been waiting months to see a specialist and I still don't have an appointment. I'm going to try my hardest to get bumped up on the list but I don't know how successful I'll be.

Do you (or others?) have any suggestions for a good blood sugar stabilizing snack before bed? I will try the applesauce tomorrow morning to see if that helps.

~Jen

I would try anything that has some fat content to it and isn't very sweet. Sweet things can send the blood sugar very high, then cause it to come crashing down...just like a rollercoaster. Fat helps get slower digestion and more even blood sugar. It works for me, as I tend to get low blood sugar myself.

[jeninwpg]

Thanks Kim. We tried giving pasta last night and he was better this morning. Fingers crossed that it works again today.

[Satori]

I agree with the others, sounds like a blood sugar issue. Is there anyway you can test his BS when he gets like that?