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Warrior Mom

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  1. That is great news! We all want to get this type of response! If I may ask...what were the deciding factors/test results/behaviors that prompted you to do the IVIG? I would really like to know more about this treatment. Thanks very much -- Warrior Mom
  2. Thank you for your reply! My son was tested for Lymes but came back negative. Do you still give your son Grapefruit seed extract? I'm not familiar with it and want to know more. How do you determine how much to give and how often? What is it main purpose -- or desired outcome? Does it address hyperactivity, attention, impulsivity? My son is on a strict Specific Carbohydrate Diet that is also Low Oxalate. He does have significant YEAST issues even though the lab reports indicated otherwise. It just seems that every path I take leads me to dead end. Since my original post he had to be hospitalized for a complete bowel clean-out which took 72 hours! We are going to seek a second opinion from another autism doctor...this is just wiping out all our funds! I can't imagine having to be my son and deal with all his challenges. I feel so bad for him. Thanks for the reply -- they mean a lot to us parents who want to rescue their children. Networking IS so important.
  3. OK...I'm on a MISSION to heal. My son's urine organic acid test (OAT) revealed some surprises and I'm VERY interested to hear back from other parents if they had any similar results. If so, how did the results impact treatment? Chief challenges: SHORT ATTENTION SPAN, HYPERACTIVITY, FREQUENT URINATION with his autism diagnosis EXCESSIVE a-ketoglutaric acid (AKG) aka: (2-oxoglutaric acid or alpha ketogularic acid) -- 52.0 mmol.mol creatinine -- should be lower than 32.3 HIGH LEVELS of Dihydroxyphenylpropionic Acid (DHPPA) -- HIGH -- 3.3 mmol/mol creatinine -- should be lower than 1.6 SLIGHTLY HIGH of Fumaric Acid -- 2.3 mmol/mol creatinine -- should be below 2.2 Begging for answers... Warrior Mom
  4. Colleen, Thanks! I'll check this out! We are treating my son for yeast right now even though his urine and stool came back negative. He had a rash on his butt that would not respond to anything other than an anti-fungal cream but it just wasn't enough. Amazing that after 6 days the rash is fading. We are just battling the yeast die-off symptoms which are horrible.
  5. Same questions here re: my 11yo son. I know he had strep multiple times before we finally had his T&A out. He suffered from many sinus infection too. There was a time when even I ended up with strep because he had it and I had my T&A out when I was a child b/c I had multiple strep and ear infections. He probably had strep for months until we finally figured it out. We had my son's strep titers pulled in May to see if they were high but they were OK. We didn't think he had strep then but wanted to see their numbers. Lots of kids in his class have had strep since the beginning of school and even one of the aides ended up with scarlet fever. He hasn't been nearly as sick as he used to be before his T&A surgery. But...i think he has PANDAS. He just hasn not been himself for a long time. So, my question is...even with no T&As and negative swab tests, can he still have strep and we not know? My son has regressive autism post immunizations so it isn't like he can verbalize his problems yet his behaviors have been off for quite some time. Wanting to recover my son!
  6. Colleen, I am so grateful to your reply. YES...I strongly believe my son has PANDAS but when tested his strep titers he was OK. I am baffled by this. My son did not present with the typical strep signs and because of his communication issues he wasn't able to tell us what was going on. I know that he had strep for a long time when we finally figured it out. There has been strep at his school and even one of the aides ended up with scarlet fever. When we get the swab test it comes back negative. It is extremely hard to swab my son so I think we even missed it a few times, if that is possible. AND...YES...my son does seem better when he is on the antibiotic but we've just attributed that to him feeling better. So, my question is...Is it possible to have PANDAS with a negative strep test? I will check out the PANDAS forum. THANKS!
  7. I'm new to this online community. I'm in search of another warrior mom/dad who is trying to recover their child from regressive autism. I need to connect with a community that can offer advice for any of our son's challenges. We lost our son gradually over a year's time. He had convulsions within 10 minutes of his 4 mo. and 12 mo. immunizations. The day after his 6 mo. immunizations he ended up in the hospital with breathing difficulties and ended up there for a week with pnuemonia. He cried hours on end after his 15 mo. shots and that was the final straw. He was lost after those episodes and we continued to lose him after that point. He lost his language, his cuddleness, his smile, and the sparkle in his eye. Our son is on the SCD, low-oxalate diet as of present and has been for the past 6 months. He also takes 1 pill of Tenex in the am and then another one in the pm(this has been a the most help for him and us.). He also gets Zyrtec every night. Chief Challenges for our 11yo son: 1) CONSTIPATION...BUT NOT YOUR NORMAL CONSTIPATION! He has soft bms but has trouble releasing them. He can go for a week and get a bloated tummy, cry of the pain, but can't seem to get them out. It's not for lack of trying, we think. He gets a dose of Natural Calm just about every day and he won't go until we have to try to give him a much needed but undesired suppository. He sometimes needs to be in the shower for 30 minutes to help get things going. When he does finally go, it is a L-O-N-G log that will coil in the toilet. I know this has to effect his behaviors! 2) Hyperactivity/Short attention span - he cannot sit still and has less than a few seconds of attention. He can't just sit and watch TV, he is constantly in motion, jumping around, etc. 3) Deep voice for such a young child 4) Urinates on average twice each hour throughout the day!!! 5) Slaps his chest (not his tummy) or other hard surfaces with his hands 6) Has difficulty falling asleep and can't sleep alone. He needs to touch a part of my body all night long 7) He had a long rash of strep infections before we finally convinced our ENT to take out his tonsils/adnoids. 8) He has had febrile seizures but hasn't had one in a long time. We tend to treat illness with Motrin prophylactically. He has also had other unexplained seizures...very few...usually when he was in a highly perferred, outdoor activity (pool, beach, etc.), and we couldn't get him to eat/drink very much. These we believe were related to drops in sugar levels and now our son eats small meals throughout the day. Stool labs showed no yeast isolated or dysbiotic flora; Urine labs showed high (out of range)DHPPA in Malabsorption Markers and Bacterial Dysbiosis Markers; slightly high Arabinose under the Yeast/Fungal Dysbiosis Markers; very high AKG a-Ketoglutaric Acid under Citric Acid Cycle Metabolites Blood Tests for IGg showed on a scale of 0-3, 0 being OK and 3 being allergic: 1 for green beans, crab, garlic, gluten, brewer's yeast, wheat, soybean, sole, salmon; 2 for mustard and baker's yeast. Other blood work revealed: glucose slightly high: 110; Neutrophils 66 (high) and Lyphocytes 21 (low) Anyone willing to offer suggestions...PLEASE DO! I want my boy back! Thanks! WARRIOR MOM
  8. We've used Guanfacine for three years and it made a huge difference for our son. He is ASD and has an extremely short attention span and hyperactive. We tried every imaginable drug for ADHD and it was all a big disappointment. Then we tried Clonodine which helped but he was on a rollercoaster with that one. It was then we tried Tenex...a great help for him. We had to start on a very low dose 1/4 of a pill because he was falling asleep but he is now at 1 pill in the AM and then 1 pill in the PM. We tried to go higher but he had bad headaches. Without it my 11 yo son would be very difficult to manage. At least we can now gain his attention albeit breifly for redirection. Without attention there is no learning! Good luck!
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