MiniFigMom

My DS 8 and I have both been taking inositol for obsessive thoughts and anxiety issues for about 3 months. I think it helps me more than him. I'm currently working on dose adjustments for him to see if the higher dose (3 grams) is what made him hyper/agitated. He's down to 2 grams again and seems to be doing better, not as hyper, not quite as anxious (no recent panic attacks). I split the dose. I mix the powder in his morning juice or his lunch time applesauce and evening milk. He's hypersensitive to tastes but it doesn't bother him. I have also put the powder into capsules (I use the Capsule Machine, size 0) but he complained about taking so many pills that it's easier just to mix it in food. (He also takes magnesium that I have to crush because the pills are huge so I make smaller capsules. He notices the taste of Mag in his food and unfortunately can't stand the taste of Calm.) I have read that Omega 3s, particularly high EPA, is helpful for anxiety but my son has just started that so it's too soon to tell (had to wait out the inositol dose change before upping the EPA). I've been using powdered inositol by Life Extension because it's 1,000mg in 1/4 teaspoon, a small amount to mix in for a 1 gram dose.

Thanks for the link re: Pyroluria! I had never heard of it and the article was very thorough. My son and I have many of the symptoms. More research in my future (as I'm beginning to learn from this forum, the reasearch never ends)!

Not yet - he is in my notes as a good local doctor. I'm still trying to get my head wrapped around all this and pulling my "evidence" together. I would love to hear how your appointment goes.

Thanks for the tips on what to have checked/tested, there seems to be so much! I will add them to my notes. I just read an article about arsenic and lead in water, juice and other foods, even the organic versions. That was scary information. Thanks to info on this site/Lattitudes my son has been taking magnesium supplements, probiotics and zinc for about three months. There has been a definate improvement! I had not heard of MTHFR and a search brought up some interesting information (looks like my son won't be the only one needing some testing). I've seen that some people here have "mutations" listed with their childrens' info. What does that mean? How did you get that information? Is that part of your suggestion to "do a genetic test" and is there something specific I should ask for? During the amnio we found that I am a carrier for Balanced Robertsonian Translocation 13,14 and so is my son, his dad is not. I haven't had any luck finding anything other than "you're normal except for a high miscarriage rate" in regard to this particular translocation. I read something a few months ago that linked OCD with genes on chromosome 14. I am curious, if anyone has any info about this. Thanks, again, I appreciate everyone's responses!

Thanks, good point. I know there are lots of allergies on his dad's side, as well as GI problems. On my side there are things like thyroid and heart problems, tics and mood swings. My older kids had a different dad (he was bipolar with a strong family history of depression). I suspect I will find a correlation between my son's illnesses and meltdowns. His therapist has been trying to get us to pin down the triggers for his anxiety and tics and to find a pattern to his obsessive thoughts but they often seem so random, with a few exceptions - like his bug phobia - that they may well be triggered by infection rather than situation. While all the kids were living at home, there was always something crazy going on! Now that it's just the three of us, I am able to focus on what's going on with him.

Thank you for your replies! My son has had motor tics for over a year, vocal tics may have been going on but disguised as "normal kid" goofy noises. The undeniable, repetitive vocal tics started in Sept. Both motor and vocal tics have been present most days since then, if not every day, but they vary in frequency and have become more complex (the "hmmm" has morphed to throat clearing, to whispering to now humming a short repetitive tune while doing his shoulder shrug/mouth stretches). He has added a couple of other motor tics, too. Thanks for the suggestion - I'll pull his medical files and match illnesses with behaviors, but the behaviors haven't been well documented until recently. He hasn't been sick more than most kids, which is one reason I questioned a PANDAS/ PITAND association at first, but he has certainly been exposed to lot with 5 older siblings. I find it interesting that PANDAS kids can react when others having infections! I've been searching this forum for user-friendly doctors and there appears to be an immunologist here in Plano so I will start there once I pull records together. I haven't had much luck searching for a pediatrician. Ours is rather old-school - he referred us to the child psych for Zoloft when my son had a meltdown at his well check-up visit(he was sick the next day). I'd appreciate pediatrician referrals if anyone has one! (Some family history which may be applicable: My oldest son (now 26) was dx'd with Tourette's when he was 16, as well as OCD and social anxiety - I strongly feel he would have been dx'd Aspergers if that had been an option years ago. My middle son was dx bipolar, ADHD with anxiety. My daughter (18) was dx anxiety/panic attacks, OCD. My stepson and stepdaughter have not been dx with any behavioral issues.)

Hello, I am new here - at least to posting! (I hope I am posting this in the right place.) I've been consulting this forum for months now trying to help my 8 year old son with his anxiety, obsessive thoughts, rages and motor and vocal tics. He seems to have been born very sensitive to sounds, bright lights, some tactile sensitivity, strong anxiety separation fears, and the need to be reassured often, line up toys, etc. We've largely adapted his needs into our family routine, it became "our normal". It's become clear that some of his behavior is definately not normal. The more I read, the more my personal diagnosis of him changes! I've gone from thinking he was just a Highly Sensitive Child (per E. Aron's books) to wondering if he had SPD to having a child psychiatrist give him a GAD/OCD with tics dx and a Rx for Zoloft. My research in these areas has recently (last week) brought me to seeing all of his symptoms fall into place with PANDAS. My question is, how severe do the symptoms need to be to "qualify"? Most of the children I've read about or seen videos about have pretty severe, ongoing problems. Then again, I read about others who are not treated or dx'd for years! Could my son have a mild, chronic case with flare ups -be extremely anxious and worried to have me out of sight, suddenly fly into a rage over something routine(then beg for help to make the thoughts stop), have an increase in complex tics - or could he be "just regular" OCD, GAD, with Tourettes, as these are often co-morbid? PANDAS seems to be hinged on the brain's reaction to infection and he has had strep several times. I never associated a dramatic change in behavior with the strep but in retrospect I came to dread him getting sick. His vocal tics began Sept. 5, 2012, about a week after he had Fifth Disease, however, there were many changes happening in our family at the same time and we attributed the new tics to stress. How to know?? I've read that untreated PANDAS may get progressively worse with each new infection and become more difficult to treat, especially in the late teens. I'd appreciate any thoughts anyone may have as to whether this sounds like PANDAS, and if so, how do I approach this with his pediatrician? Thanks!