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Trying ask the right questions

Discussion in 'Optimal Kids' started by ChristineKleiber, Apr 10, 2012.

  1. ChristineKleiber

    ChristineKleiber New Member

    I started this thread over on Robb W's forum to help unravel the puzzle of my son.

    http://robbwolf.com/forum/viewtopic.php?f=39&t=4929

    Mostly what I need is questions. When you have a special needs kid, lots of practitioners roll in with their patented solution without really evaluating the patient- sort of a one size fits all approach or worse yet cart before the horse. Rather what I need is

    • the questions to ask,
    • the suggested tests to help answer the question
      and THEN the the nutritional/lifestyle interventions.




    I have received some help on that forum and from a few PM's here that will summarize in another post below.



    So if you have some time to read that thread and some insight, please share. If you have a child that may have similar issues, feel free to share how the practitioner evaluated the symptom, any tests done, and then what were the considered treatments.



    I have appts scheduled for this child in the next month, so I will hopefully see where we can get within traditional medicine - for their benefit and this little guy's too.
     
  2. ChristineKleiber

    ChristineKleiber New Member

    Vitamin/Mineral Levels


    B's, D, E, K, Mg Selenium, Iron, Calcium





    Leaky gut-

    • Gut permability tests/GI Effects Metametrix test
    • Progesterone
    • Pregnelone
      BDNF
      NGF


    Sleep study



    DHEA level

    Salivary Cortisol

    HS CRP
     
  3. Shijin13

    Shijin13 Guest

    ckg



    just shared this w/a friend who's working a different problem w/her son - but trying to figure out what questions to ask... don't know if she'll drop in...but she might!



    Sleep study has me thinking - I have a really good sleep apnea doc -in DC his name is Dr Alpher



    Also need to add DHEAs and Salivary Cortisol - I'd be interested to see what your DS's cortisol circadian rhythm is... I wonder if Dr K has seen any differences in circadian cycles w/ASD? that's a good question for the ask Jack....section.
     
  4. chocolate

    chocolate Silver

    I was just reading about a compounding pharmacy that does oxytocin compounding and it is going very well for lots of kids. It helps with sleep and attentiveness. I was tripping over it looking for the cold water/oxytocin/neurogeneration. That's what happens. I dismissed it for our family's needs, because I think the cold water is gonna get us there. That explains the marvelous sleep, I think. Then the zonulin that the doctor was mentioning, one of the simple links showed that the basic probiotic for home fermenting makes the zonulin do its job.

    http://www.belmarpharmacy.com/oxytocin.htm

    http://www.npr.org/2011/01/03/13247391Tha's3/scientists-test-trust-hormone-for-autism-fight

    http://www.raysahelian.com/oxytocin.html

    Its probably all old news to you, but I thought that it was interesting that the kids are not making enough oxytocin, so supplementing could help. Also, when I was looking on the metal detox sites, a lot of folks give their kids the lithium orotate supplements. They are very mild, and lithium orotate is in Centrum. It works very quickly, 30 minutes. You would only give him a little tiny bit. It calms you right the heck down. My daughter is on Lithium and she took the orotate when she was off it and loved it as a quick quieter. Its non-prescription, mail order. It is an extract from a vegetable. You could try it yourself and see, its very helpful. It doesn't get you to the questions to ask the doctor. That's my two cents. I know in our house the rule is one change at a time, no more than one in a week. I think its good because it gets us through the entire weekend and work week to find rough spots.
     
  5. ChristineKleiber

    ChristineKleiber New Member

    Thank you... I will keep this in the list - particularly when I get the we don't do that test speech...
     
  6. ChristineKleiber

    ChristineKleiber New Member

    Chocolate,

    No it isn't all old hat to me. If it were, I wouldn't still be looking for answers - heck even the questions - six years later! And each of your suggestion will be helpful to consider when we get to what exactly we are trying to treat!
     
  7. ChristineKleiber

    ChristineKleiber New Member


    Definitely will add these tests and certainly need to ask Jack on the circadian cycles - he was the one that suggested the sleep study if it is truly poor - which it is at the extremes of January AND July of all things.
     
  8. Jack Kruse

    Jack Kruse Administrator

    sleep and brain is a huge tie.....
     
  9. chocolate

    chocolate Silver

    http://www.news-medical.net/news/201...men-Study.aspx





    why just men? Berries reduce Parkinson's risk in men. Is it because the men aren't making enough melanin? Do Parkinson's men have too many melanin induced events because of the hare trigger dopamine receptor?

    http://www.mombu.com/medicine/heart/...s-3570685.html



    http://www.mendeley.com/research/die...atic-traits-1/



    The ladies need help, too.



    Black caps are crickets?



    http://www.ncbi.nlm.nih.gov/pubmed/16732541









    http://www.news-medical.net/news/201...ly.aspx?page=2



    20 per cent are misdiagnosed with Alzheimers and it is discovered at autopsy. How bad does that suck? Then there are folks with brains full of the junk that do just fine.



    I was just thinking of your little boy. The berries might help him, like "phyto-melanin". And if you could somehow wangle an alzheimers study. My kid had gene tests and turned out she had a elevated liver risks and surely enough, she's had two abnormal bilirubin and it's gone not followed up on. She is on basically a carb free diet and getting more fabulous all the time. We are going to follow up, of course, but we just wanted to wait a little tiny bit longer to see if we could get the triglycerides perfect first. If you read the liver blog, something might just jump out at you. Also, there is a circadian link in the anything circadian thread. The circadian clock is in the liver and coordinates everything.
     
  10. ChristineKleiber

    ChristineKleiber New Member

    Just a quick update for anyone who is curious how this has gone down. I drafted a lengthy email to the pediatrician, developmental pediatrician, GI doc and the nutritionist on 4/17. The pediatrician deferred to the specialists. The dev. pediatrician suggested a new adhd medicine that might not mess with the weight problem. The nutritionist asked me to fill out yet another food log and asked me to cough up references for all the testing I was suggestion. No response from the GI doc.



    I wanted to give you an update since it has been about 90 days since I was in to see [nutritionist]with [son].



    When I met with [nutritionist]in January, while nothing was an emergency, it seemed everything was going in the wrong direction. Poor sleep, constipation, meltdowns at the end of the day, suppressed appetite, and what appeared to be a slight weight loss. [nutritionist] confirmed this as well as what appears to be the expected slow down in height that goes with stimulant medication. We decided at that time to stop meds and focus on restoring appetite and growth. To that end, no real change to the dietary plan - great food -( lots of meat and fish - going grass fed and wild caught where $$ allows), fat as much as we can - nuts and even shots of olive oil, + the Pediasure Peptide. Vegietable intake relative to fruit could be better, but he is willingly eating whatever is put in front of him.



    On the positive side, appetite is back, even to the point of [son] verbalizing he is hungry and asking for food. He is getting 3 squares + a snack and 8 oz of the PP daily. We jumped in with 1.5 mg melatonin to ensure sleep which seems to be doing well. I have added coconut oil to his diet - usually by making a homemade chocolate bar with dark chocolate, coconut oil and some almonds. When I can get it to him, it seems to help not only get the fats in but also aid the constipation. He seems to go more often without getting too loose. For the most part, he is happy and even enjoying a cooking class after school. He is enjoying being outdoors and trying harder to play with kids in the neighborhood.



    On the negative side, there has been no change in weight, if not a bit more loss. And to that end, I think we really need to investigate some more. He is about 52 lbs and that is down from a year ago. So while a year ago, [pediatrician]and [nutritionist]were thinking that he may just "be thin" and will continue to "just be him", I don't think we can make that assumption when we are dealing with a negative trend in weight.



    While it is not documented science, you know I heavily rely on gut instinct and use that to steer me to research more and try to ask the right questions. While the majority of people who have interest in their work have obesity issues, I have continued to do lots of reading of the biochemistry of Matt LaLonde, Stephan Guynet and Robb Wolf. Through them and networking with other moms who have kids with failure to thrive issues, I have some more suggested areas that might be the source of [son's]issue.





    Since I do not have records of all his labs, I don't know if we have current readings on these, and in some cases I don't know if we have ever tested them

    B-6. B-12, Folate (He does take a children's multi vitamin_

    Vit E and Vit K (he does take 200 IU of Vit E daily)

    Vit A, Vit D

    Magnesium, Potassium, Calcium

    Selenium

    Iron



    While I know also that his Flex Sig and EGD's have shown good results, and that he passes on the fecal fat test, I am still terribly puzzled that the best weight gain he had was when he was taking the MT-4 lipase. Is it possible that there is something else happening at the intestinal brush border that we haven't investigated? I know there is a term called "leaky gut" that has variable acceptance in the medical community, but would a gut permability test, such as a GI Effects Metametrix test be warranted?



    Other items which have been suggested to me as possible indicators of problems - which I have no clue if we ever investigated are



    DHEA level -

    Salivary Cortisol

    reverse T3

    HS CRP a tougher standard to measure inflammation

    Is there something on the adrenal level that is driving an energy disconnect down the line at the thyroid?



    Or is there something going on at the liver that we've missed

    Pregnelone - tested using a VAP lipids test - if this is low and it is possible that so is

    Progesterone - which from what I read is also crucial to neuro functioning in kids with ADHD and why some see imnprovment at puberty





    Also, I don't know that we have ever tested BDNF and NGF, which while not necessarily related to growth/weight, may well have an overall effect on how well his brain is wiring for the things it needs to do as it grows. IMHO, excepting his genetic issues that may be compounding, I would like to think better fed cells (through improved digestion ) would increase the cellular ability to generate these which would in turn create better signaling for the liver, etc to do its job.

    BDNF

    NGF



    Lastly, I know that good sleep is crucial to both good growth and good neuro function. [Son] still trends toward sleep difficulties at the extremes of the solstices. I don't know yet if a sleep study is warranted, perhaps this summer if we don't find and improve precursors to good sleep through the tests above.



    while I would like to consider another stimulant medication for [son's] attention, I don't know that we can until we come back amidships on the growth issues.



    Please let me know what you each think on this, and if there is time in your schedule to bring [son] in for another visit. I had his annual IEP last month and will bring you the goals for next year.



    Regards,
     
  11. chocolate

    chocolate Silver

    I was messing up with the sulfur. The fruit needs the acetylaldehyde dehydrogenase and sulfur slows it down. The sulfur is an essential and the fructose isn't. I think fructose malabsorption is the root of our family's evils. It causes the intestines to signal for zinc not to be absorbed. And you can't sneak it in the body anyway, it will just dump it out the urine.
     
  12. ChristineKleiber

    ChristineKleiber New Member

    Just a quick update.

    I was able to meet with the GI doctor yesterday and obtain a consult to endocrinology and allergy. Lab work that is more related to GI than endo was also done. HS CRP, Vit D, CMP, Mg, Sel, most of the vitamins. Also doing a fasting lipids and serum cortisol. Fecal fat test will be repeated too.

    So now my question... where do I find optimal ranges for children?
     

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