anyone want to chat about...

[wapiti]

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[Ottakee]

Has he ever been tested for mitochondrial disorders?

 

My girls have them.  One has 3 different ones, the other has 2 of the 3 her sister has.

 

THey are on Co-Q 10, 990mg of Carnitor a day, along with the fish oils and other medications.  They are directed though by their neurologist as to amounts, what to take, etc.

[PeterPan]

Why are you still seeing a ped for this?  Sounds like you need a specialist.

 

We could tell you all kinds of things that work with low tone, but once you introduce the tethered cord question that requires a specialist to sort out.

[wapiti]

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[Indian summer]

You mention the nutritionist would likely recommend GLuten free, dairy free. Have you tried this?

[PeterPan]

Wapiti, that question about apraxia is what I would have been asking too.  What you're describing is what my ds does if he doesn't focus, and the simple fact that he has to focus that hard shows you it's a motor control problem, i.e. praxis.  PROMPT is the most effective therapy I know of for apraxia of speech.  That's not to make somebody feel bad for choosing differently.  I'm just saying there's a lot of ineffective therapy out there and very little that goes to the core of the motor control problem.  Does it concern you that he's 11 and still having problems?  Have you thought about seeking out a 2nd opinion, preferably from an apraxia expert?  If you could find someone who is certified in PROMPT, they could sort this out for you in a hot minute.

 

Is he eating cheese and/or white flour?  I'm not saying dairy in general but cheese specifically.  Also not gluten free in general but refined flour specifically.  And have you counted his fiber intake and then tried to double it for the recommended amount for his age?  And do you know how to open his ICV (ileocecal valve)?  It's not hard.  Just google for a youtube video or instructions.

 

Btw, I'm concerned about his not sleeping well.  You might have pushed his calcium out of whack with your magnesium dosing.

[wapiti]

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[Heathermomster]

Has an MRI scan been performed after the tethered spinal cord surgery? If you could rule out issues there first, that would help.

 

My DD has participated in Cinci Children's Hospital Bowel Management program twice. If you have any questions about it, please feel free to email me off list. Blessings, h

[PeterPan]

Apraxia is motor control yes, but the retrieval and lexicon issues go with it, meaning the things you're seeing are all connected.  For instance, my ds can now say hot or cold thanks to therapy, but if you do the testing he can't RETRIEVE them.  It's still the apraxia you're seeing.  So when you do that testing, he'll sit there for a while and think (this is on a similarities test, where he's supposed to explain how two items are similar and how they're different), and after a while something really bizarre for a 5 yo will come out like: one keeps things fresh and the other you cook with.   :svengo:   The age-typical answers were one keeps things hot, the other keeps things cold.  But he couldn't retrieve those words (you could hear him trying to), so you finally get a more complex answer that reflects his high level of language understanding.  What a mess.

 

So yes, it's still the apraxia, even when it's word retrieval.  I'm guessing a private SLP would have some help for you, either showing you things to do or doing it themselves or a combo. I have some Jean DeGaetano workbooks recommended by our SLP that are AWESOME.  Once you get the idea of what needs to be done, you'll recognize ways to do it in life.  A lot of it is lexicon and getting words to organize in the brain logically so he can find them.  They'll do things like making lists.  Name 20 vegetables.  Tell me all the sports you know.  Tell me your favorite colors.  Name EVERYTHING in the room.  Now go to another room and repeat.  You can use picture dictionaries organized by topic, so he's seeing all the words for a topic in one thing.  The DeGaetano books are awesome, highly recommend.  You find them at the Great Ideas for Teaching website.  Here's one to get you started.   Facilitating Word Recall   You can buy it directly from GIT.

 

Is he on omega 3?  

 

 

[Pen]

Nutritionally we have been going all organic, and increasingly as much "junk" and sugar free as possible. (Yesterday I allowed an ice cream, but that is pretty rare now...we do make our own all fruit (no sugar) "sorbets" and a candy with honey, raw cacao and coconut oil and butter, for treats, and I am about to add the homemade Larabars that someone put in my thread about what to take for std. testing.) As well as increasingly becoming "raw" and heading toward meat free.

 

I think doing changes somewhat gradually can be useful sometimes to not be thrown into chaos, but sometimes change takes a month or more to see evidence of and is not from just one thing, but rather an overall situation.  If you do an elimination diet and then introduce things individually you may be able to get some idea if some foods are provoking problems.

 

Could he need more Vitamin C? It seems to relate to sensory, colds, and bowels...and so much else too.

 

In terms of supplements, we have been using "orthomolecular medicine" type approaches. The website Doctoryourself.com has a lot that you can search for free, and also has a link to being able to search the database of orthomolecular journal articles. I have a couple of  Andrew Saul's books, and The Vitamin Cure for Children which I have found helpful. For us, all the vitamins are really important, some in mega quantities, and supplements that seem especially important are omega 3's and various minerals. I take acetyl-L-Carnitine, though my son does not. We both take CoQ10 etc.

[Pen]

ETA: Niacin seems to help some with sensory issues and also with getting to sleep.

[Mukmuk]

DH is 100% against meds as he's very seen negative outcomes, so I'll be following the idea of supplements closely. We're in the queue for the dev pede and have no access to specialist CBTs for OCD for kids. So it's back to the nutritionist.

 

In any case, we started going organic about 3 years ago. Ds was prescribed a slew of amino acids and minerals. I didn't think the results were so remarkable, although going dairy free was like night and day (he had leaky gut). With him off most of his supplements (6mths now) except for the basic omega 3, probiotics, and recently, magnesium, it's been disastrous. We're awaiting test results before prescription.

 

Wapiti, good luck on the L-carnitine. I now recall that ds was put on this together with coq10, and it seemed to improve his handwriting. The improvements have largely stuck although he's no longer on L-Carnitine. Another supplement that seemed to work was cholesterol pills*. Ds has abnormally low cholesterol, which we had to monitor. I suppose we will be reacquainted with many of his suppments again once the results are out.

 

* eta: ds had meltdowns that went from 0 to 60 in a heartbeat. It didn't happen often, but it happened enough. All that had seem to slowly dissipate. I thought it was a developmental thing that he improved, but that has come back too.

[PeterPan]

re: cholesterol, there's a Johns Hopkins study right now on hypo cholesterol and autism.  The Nisonger in Columbus is participating with it, which is where I found the info.  At the most clinical level, there's a name (acronym SLOSS?) and severe symptoms like microencephaly, etc.  It caught my attention because when I had my cholesterol checked a fair number of years ago (13-14) it was remarkably low, low enough that the tech commented that it was the lowest he had seen.  Ironically, I have a large head for a woman, as does my ds.  (as in hats don't fit, blah blah)  I'm 5'5 1/2", so it's not due to unusual overall size.  Of course you could just laugh and say I have a big head (ha), but still.  Also, I was told that low cholesterol, aside of course from that SLOSS syndrome) is also associated with poor immune function.  At the time of the testing I did in fact have leaky gut and candida problems and was severely chemically sensitive.  I was thinking recently I should get it rechecked, just to see where it's at.  

[wapiti]

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[Mukmuk]

All ears about explanation re dairy.

 

In ds' case, he had a test that showed he had leaky gut, and his system was positively crawling with candidase. The cause was dairy. He did a yeast cleanse (Candidase) and at various times, was put on S boulardii, oil of oregano, curcumin, to name a few. We now rotate among various probiotics and drink home brewed water kefir for more variety.

 

According to our nutritionist (digging around in my memory), the L-carnitine and coq10 improves hand to eye coordination. I was surprised at the time. The handwriting actually became smaller (from giganto previously).

[wapiti]

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[srs]

This is an interesting thread! I have nothing to add from a supplement perspective, but I can say that for my daughter, ex lax did what Miralax could not- the stimulant gave her the urge to go poop, which she could never feel with Miralax.

 

We also went to Cincinnati Children's Bowel Management Program, and I cannot speak highly enough of them. Without that program my seven year old with cerebral palsy would still be in diapers.

[Mukmuk]

Sorry, I meant his system was crawling with candida.

 

The candidase program took about 4 weeks. It was tough in that there were specific times that the pill can be administered- 30mins before food and 2 hours after. Ds has mid morning and mid afternoon snacks, so I had to time it carefully. He doesn't swallow pills either, so it's a nightmare getting him to drink the vile potion (the powder in the pills smells awful!) without gagging 2x a day, not to mention the enzymes he had to take with every meal!

 

I'll find out how effective just dousing a kid with probiotics is in a few weeks from the test results. There is always a chance of regrowth, and my sense is that it did happen. When ds started with water kefir, we saw die off symptoms again.

[Tiramisu]

According to our nutritionist (digging around in my memory), the L-carnitine and coq10 improves hand to eye coordination. I was surprised at the time. The handwriting actually became smaller (from giganto previously).

 

 

I stopped by to relax and see what everyone was talking about and I found this thread. I love this stuff. I'm just so tired right now to think of anything helpful to say. Of course, the sensory and hand-motor stuff got my attention because those are big ones with us. One sensory dd is getting looked at by an OT tomorrow to assess VMI difficulties. It might be a good time for an experiment. LOL.

 

I've been backing off of supps lately to save money, but I felt very good (steady energy)  when I was taking coq10. I wish it were less expensive. Maybe I should ask for some for Mother's Day. 

[Pen]

....

 

 

Thans for all your thoughts, Pen.  I have seen vitamin C mentioned here and there in what I've been reading though it's such a common vitamin that I haven't paid close attention.  The past few days I've been giving him emergen-C just because he has a fresh cold.  I'l have to think about adding it to a long-term plan.

 

 

 

Emergen-C tastes good, but the additives have been a problem for my ds. Our orthomolecular medicine guide gives Vitamin C as one of the places to start, since its lack is so often a culprit in so much...and it is cheap and easy to supplement compared to many other things.

 

It is also clearly essential and not something that we produce within our own bodies.  For a 90 pound teen the usual basic target dose is around 4000 (yes, four thousand) mg per day unless bowel tolerance is reached sooner. More in times of sickness or stress. I am referring here to Ralph Campbell, M.D. and Andrew W. Saul Ph.D, guidelines.  Best split as say, 1000 mg 4 times in the day--that is my own experience.

 

Or,  the therapeutic level (based on the work of Frederick Klenner, M.D.) 350 mg. Vit. C per kilogram of bodyweight divided into 9 to 18 doses during the day (since it is water soluble and does not hang around, many doses work far better than a single big one).

 

Getting the vitamin C levels up to optimized also seemed to have helped us be rather more gluten tolerant than without it. ... over time, not as quick as some things like a series of therapeutic doses to get rid of an ear infection.

[Mukmuk]

According to our nutritionist (digging around in my memory), the L-carnitine and coq10 improves hand to eye coordination. I was surprised at the time. The handwriting actually became smaller (from giganto previously).

 

I want to emphasise how subjective this sort of judgment can be.  :glare: I certainly thought so at the time, but we're always doing a multitude of things to address issues. Currently, another improvement in handwriting is likely due to VT and the fact that I get him to write Diane Craft style. 

 

At one stage, I had wanted to be very scientific about all this and administer one variable at a time. Impossible!

 

Pen, I'll be checking out the orthomolecular guide and the vit C. Tks!

[wapiti]

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[sbbulliv]

Cutting dairy was a life saver for us re constipation and behavior. There are many good substitutes. Vanilla almond milk tastes like a milk shake to me.

[Tiramisu]

I'm in the middle of some searching and I came across this article on adhd and carnitine that happened to mention that carnitine can help when there is ischemia (reduction to the blood supply) to the spinal cord.  It may be ultimately irrelevant, but it's intriguing.

 

Since when has being irrelevant mattered?  :laugh:

 

I start getting interested in these things and they take on a life of their own. They become increasingly irrelevant to the rest of the world and increasingly intriguing to me. 

 

Reduction of blood supply to vital organs due to blood viscosity just happens to be something I've been thinking about lately. That doesn't seem completely unrelated to the subject of the article in a practical way, but I'm just finishing up my second cup of tea and I haven't read it yet.  :o

[Pen]

Can I jump into more likely irrelevancy then?

 

The subject of viscosity of blood reminds me of someone I know who used the blood type diet (not so popular now) to heal himself of a severe autoimmune disease... He was a scientist at a university and thought it probably had to do with blood viscosity... that not having foods that caused ones blood type to agglutinate was key.

 

Also on red blood cells, I have had chronic fatigue problems which are thought to be due to abnormally shaped red blood cells probably in turn due to an environmental trauma. Thus fatigue because of poor oxygen to everywhere. I am supposed to take (here it comes again) a lot of vitamin C as something thought to help return them to more normal shape...that is also why I am taking the acetyl-L-Carnitine (for the mitochondria, and energy that is, not the blood cell shape so much).

[Tiramisu]

Can I jump into more likely irrelevancy then?

 

The subject of viscosity of blood reminds me of someone I know who used the blood type diet (not so popular now) to heal himself of a severe autoimmune disease... He was a scientist at a university and thought it probably had to do with blood viscosity... that not having foods that caused ones blood type to agglutinate was key.

 

Also on red blood cells, I have had chronic fatigue problems which are thought to be due to abnormally shaped red blood cells probably in turn due to an environmental trauma. Thus fatigue because of poor oxygen to everywhere. I am supposed to take (here it comes again) a lot of vitamin C as something thought to help return them to more normal shape...that is also why I am taking the acetyl-L-Carnitine (for the mitochondria, and energy that is, not the blood cell shape so much).

 

I spot an intersection of topics that are relevant to a relevant person in my life: autoimmune, blood viscosity, chronic fatigue, red blood cells. That relevant person is going to be treated to some tasty vitamin C, and possibly carnitine. I'll have to confirm that carnitine isn't an autoimmune trigger first.

 

I did ask for a test for blood viscosity after reading about symptoms of it in an autoimmune book, but the lab slips we got are no different from what we've had before so maybe we're covered.

 

I read the blood type diet book years ago. I almost want to test it again by eating what's supposed to be bad for me and seeing how I feel. (I promise not to use this method with my kids.) I remember tea isn't supposed to be good for me. I think that made me give up before trying.

[Pen]

I spot an intersection of topics that are relevant to a relevant person in my life: autoimmune, blood viscosity, chronic fatigue, red blood cells. That relevant person is going to be treated to some tasty vitamin C, and possibly carnitine. I'll have to confirm that carnitine isn't an autoimmune trigger first.

 

I did ask for a test for blood viscosity after reading about symptoms of it in an autoimmune book, but the lab slips we got are no different from what we've had before so maybe we're covered.

 

I read the blood type diet book years ago. I almost want to test it again by eating what's supposed to be bad for me and seeing how I feel. (I promise not to use this method with my kids.) I remember tea isn't supposed to be good for me. I think that made me give up before trying.

 

I had also given up on the blood type diet as too difficult. However, the person I met who had used it to cure his scleroderma was devoted. But I don't think the results are immediate, either positive or negative.

 

Andrew Weil had something about not using carnitine with children, but I do not know why, still, if there is a child involved I'd be reluctant to do it, not understanding what the issue may be.  If I felt it were needed, I'd look into what the issues are (not that the person you have in mind is necessarily a child, but I just remembered this and thought to mention it, since it has come up on this thread with regard to children). 

 

If you find anything about Carnitine being an autoimmunity trigger, would you please let me know. I have sometimes wondered if I have delayed negative symptoms after taking it, but have not been able to correlate it thus far.

[wapiti]

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[Tiramisu]

I think the approach to the methylation issue can be approached by using a special b complex designated by their use of the methyl, co-enzyme, or activated forms of the B's. Things like this:

 

http://www.swansonvitamins.com/swanson-ultra-high-potency-activated-b-complex-high-bioavailability-60-veg-caps

 

 

[SonshineLearner]

Who would I want to take my child to for diagnosis in regard to issues such as these?  It's not really a naturopath, right??? Confused.....