Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 My son had bloodwork done in Sept, but I'm still looking for more accurate answers to what's going on inside him. Last time, his neuro tested: CBC (diff/ plts) CMP 14 CPS/ Aldolase T3/ T4 (free)/ TSH Carnitine Lead Routine chromosones Fragile X chromosomes Urine Amino Acids Urine Organic Acids His iron was low (related to his diet, I'm sure), and I know his 1- and 3-methylhistidine levels were off. The neuro is sending me to retest his methylhistidines, since she said as a urine test, the results could be due to human error. What other tests can I have done while he's already getting his blood drawn? So far, I know Vitamins A,D,E,K. Any other vitamins? Any specific tests for gluten sensitivity? He's a carb freak, barely eats fruits, veggies, or meats (Partially a sensory issue as well). What else could I be missing? The tests that were done above were done prior to starting fish oils. I posted earlier that I took him off of his fish oils on Monday. How long should I wait before his bloodwork? I'm going in Dec, but I don't want him to have any oils in his body that could throw off the tests. Sorry if I'm repeating questions. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Take a look at message#53124 Also, low iron may not be related solely to diet but perhaps celiac, diabetes, malabsorption. I would not let that one go. It was part of our puzzle here and the knowledge we gained for my kids recently helped my dad, a diabetic. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 , This is the ASHA Position Statement on CAS Known neurologic etiology: Stroke, trauma, infection1° or 2 ° sign of complex neurobehavioral disorders (genetic, metabolic)Idiopathic neurogenic speech sound disorder These are some lab tests recommended for apraxia on this list by Dr, whose own son is apraxic with a history of autoimmune disorders --asthma in his case, metabolic disorders and hypotonia. All of which have been greatly helped by the fish oil + other diet/supplements to the point where he is almost fully recovered, but without the supplements he regresses, or when there is an inflammatory agent present--breach in diet, yeast /mold in environment etc. These are his sensitivities. other kids may have other triggers. Not all kids with apraxia have the exact same thing or the same metabolic issues necessarily, but it is worth ruling them out or addressing them if present. It's is all a guessing game at this point, there is research out there, but the double blind clinical studies are not too practical for two main reasons: 1. not enough profit to do multi million dollar research--fish oil and diets and supplements doesn't make Big Pharama rich; 2. All kids are slightly different it seems, require slightly different protocols, some may need E some may not, some may need E + carnitine, other something else--it all depends on the interactions between genetics and their viral/bacterial/chemical/food exposure. it's never that simple I'm afraid and very often tests can rule out some causes but keep in mind that there are many other genes or conditions or sensitivities, deficiencies etc that cannot yet be tested for. My daughter has a family history of gluten intolerance--note-- not the allergy, not Celiac necessarily and her blood work and skin tests showed nothing--yet as I said her family history, behavior, autoimmune skin condition, her malabsorptions and fatty acid deficiencies, along with B12 deficiencies and carnitine deficiency etc. and of course her apraxia all point to a problem with gluten as well and the casein sensitivity was present in her blood work. Given all these gluten intolerance is assumed, and it can be visually observed on her skin as can corn and soy intolerances which give her " chicken skin " and increase her rashes and scalp psoriasis. Just because there is no test sensitive enough to pick up delayed reactions, we can safely assume gluten intolerance is present and we already know gluten peptides in larger particles than normal in the blood stream--for whatever reason affect the brain. So looking at all these symptoms and knowing how often gluten is implicated in neurological disorders--pretty much all non physical trauma type accidents--meaning neurological disorder of unknown etiology have all been linked at some point to gluten intolerance-even if it is not the primary cause necessarily, it feeds a vicious cycle of oxidative stress that affects the brain in both the young and the old. In other words, very often gluten intolerance can be acquired as is my case and the field of epigenetics confirms that environmental exposure activate genes that are responsible for serious and often chronic disorders. Common Neurological “Soft Signs” that go with apraxia • Limb dyspraxia – Coordination difficulties Ø Gross and/or fine motor issues • Low muscle tone (particularly truncal) • Sensory Integration Dysfunction Ø Poor Proprioception Ø Poor Vestibular Sensation Ø Abnormal pain processing/high pain tolerance Ø Tactile defensiveness Ø Overly sensitivity to light and/or noise Common Nutritional/Metabolic Deficiencies • Carnitine deficiency • Fat soluble vitamin deficiencies (ADEK) • ¯ Iron (True deficiency vs. inflammation) • Zinc deficiency • ¯ B-vitamins • ¯ Cholesterol • ¯ Albumen • ¯ omega 3 (DHA, EPA) • Misc: ¯ amino acids, selenium, magnesium, calcium, glutathione etc Again, your child may not have any of this, but if you really want to rule things out go biomed and these are some tests recommended for apraxia: What Labs Should Be Checked? Plasma Vit ADEK levels, zinc, copper, PIVKA-II (more sensitive test for Vit K deficiency ).Methylmalonic acid (screen for B12 bioavailability). SeleniumCarnitine (total and free) and acyl-carnitine levelCeliac panel (to include anti gliadin IgG, IgA, tTG and total IgA level)HLA testing for DQ1, DQ2 and DQ8 allelesRAST testing for common allergies (milk, casein)Serum iron, ferriten, TIBCComprehensive metabolic panel Cholesterol/lipid profileComplete blood count with diff (CBC)Lactic acid, pyruvate CK level, Plasma amino acids and urine organic acids if not already done during previous metabolic work-up. Stool (Malabsorption screen): Stool for fecal fat, pH and reducing substances (qualitative fecal fat) (Labs in blue are the priority if you can’t get everything) Hope this helps and I'm not sure I would keep the child off the fish oils for months if it takes that long to get a DAN apt. and get the tests done. Many apraxic kids at age 2-3 recover almost fully on the oils and PROMPT to the point where by school age they are indistinguishable. That is provided there are no other malabsorptions metabolic issues present. If there are they need to be addressed before the oils and the PROMPT can actually work at their best. Now, are these recovered children still apraxic?---those with older recovered children claim yes, regressions can occur when supplements are stopped, inflammatory triggers are present--be they food intolerance, viral, bacterial, chemical, parasitic in nature. And again, not all kids need this or have this phenotype etc., but since you're looking for answers and want to leave no stone unturned.... Good luck! Elena From: <cp_mistyrose@...> Subject: [ ] What should I ask for in bloodwork? Date: Saturday, November 29, 2008, 5:17 PM My son had bloodwork done in Sept, but I'm still looking for more accurate answers to what's going on inside him. Last time, his neuro tested: CBC (diff/ plts) CMP 14 CPS/ Aldolase T3/ T4 (free)/ TSH Carnitine Lead Routine chromosones Fragile X chromosomes Urine Amino Acids Urine Organic Acids His iron was low (related to his diet, I'm sure), and I know his 1- and 3-methylhistidine levels were off. The neuro is sending me to retest his methylhistidines, since she said as a urine test, the results could be due to human error. What other tests can I have done while he's already getting his blood drawn? So far, I know Vitamins A,D,E,K. Any other vitamins? Any specific tests for gluten sensitivity? He's a carb freak, barely eats fruits, veggies, or meats (Partially a sensory issue as well). What else could I be missing? The tests that were done above were done prior to starting fish oils. I posted earlier that I took him off of his fish oils on Monday. How long should I wait before his bloodwork? I'm going in Dec, but I don't want him to have any oils in his body that could throw off the tests. Sorry if I'm repeating questions. Thanks for your help. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Ask to have creatine tested. My son tested low on this and we started supplementing with creatine ethyl ester. We've gotten a tremendous increase in expressive language. Creatine is normally associated with hypotonia, etc... My son is big and strong but it helps with his speech. > > My son had bloodwork done in Sept, but I'm still looking for more > accurate answers to what's going on inside him. Last time, his neuro > tested: > > CBC (diff/ plts) > CMP 14 > CPS/ Aldolase > T3/ T4 (free)/ TSH > Carnitine > Lead > Routine chromosones > Fragile X chromosomes > Urine Amino Acids > Urine Organic Acids > > His iron was low (related to his diet, I'm sure), and I know his 1- > and 3-methylhistidine levels were off. The neuro is sending me to > retest his methylhistidines, since she said as a urine test, the > results could be due to human error. > > What other tests can I have done while he's already getting his blood > drawn? So far, I know Vitamins A,D,E,K. Any other vitamins? Any > specific tests for gluten sensitivity? He's a carb freak, barely eats > fruits, veggies, or meats (Partially a sensory issue as well). What > else could I be missing? > > The tests that were done above were done prior to starting fish oils. > I posted earlier that I took him off of his fish oils on Monday. How > long should I wait before his bloodwork? I'm going in Dec, but I > don't want him to have any oils in his body that could throw off the > tests. > > Sorry if I'm repeating questions. Thanks for your help. > Quote Link to comment Share on other sites More sharing options...
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