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familyof4

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  1. My son also has a spot on his MRI - the neurologist didn't want to do an MRI because he knew it would come back abnormal. Once you see a spot on an MRI you are suposed to repeat the test after a year to make sure nothing has changed - that is routine. My son's white matter was in the periventrical region of the left frontal horn. Talking with the neurologist he said these spots are common and consistant with a patient that has an autoimmune disorder. Since my son has Celiacs as well as now PANDAS I wouldn't be suprised to maybe find more now if we repeat the MRI which we haven't. He was also a preemie which can result in white matter although not in the location my son has his.
  2. My son was very colicy as an infant - we knew something was wrong but couldn't get anywhere with the doctors. My daughter had severe food allergies and celiacs so we started down that route with an allergist. He had allergies but they were pretty mild and avoiding those foods never helped. I finally took pictures of his diapers to show the allergist - what I thought was mucous in his stools was actually malabsorbed fat. We were sent to a pediatric gi. It took several tests - endoscopies, etc. But it was finally a stool test that resulted in the pancreatic insufficiency diagnosis. Then we had another slew of tests to rule out Cystic Fibrosis and Schwachman Diamond Syndrome. Starting on pancreatic enzymes made a night and day difference in him. To this day the doctors can't say why he has this problem - my pediatrician was told she will never see another case of this in her lifetime and that he is the 1% they just can't find the cause of. We were also told he would out grow this by kindergarten. The GI has finally admitted he thinks my son will be on enzymes for life.
  3. Wow - So much to research. I haven't read all of the links yet but did want to share that my PANDAS son has Pancreatic Insufficiency and has taken prescription digestive enzymes since he was finally diagnosed as a toddler. He produces little to no enzymes on his own.
  4. Your case sounds very similar to mine. My son started a severe eye blinking tic at age 4 1/2 . We saw both a pediatrician and a neurologist. The neuro told us it would not go away and he would likely develop more tics. The neuro did point out that he was suprised he couldn't pick up any subtle tics in me or my husband as usually he can see it in a parent even if they don't know they have a tic. My son had some counting behaviors but these were dismissed as a stage he was going through. 6 week later the tic diappeared. 6 months later I contracted strep and over night my son exploded in tics and frequent urination issues. He was strep negative at the time. At age 6 my son tested positive for strep for the first time - our only clue was the sudden overwhelming separation anxiety that popped up from out of nowhere. He also started with his first vocal tic, lots of obsessions and lots of counting. (It took him 104 bites to eat his dinner one night - we had no idea he had been counting this!) Later I learned that when his eye blink tic started - strep was going around his pre-school. With each exposure my son has had, his symptoms have been worse than the time before and harder to get to go into remission. Advil makes a huge difference for my son. He also responded well to high dose antibiotics during his first few episodes less during the last and worst episode. If your pediatrician is openminded I would test for strep and titers (although my son's are low) and try a course of antibiotics, (refer to other threads on this forum as to which ones work best) and see if you think it makes a difference for your son. Good luck! Heather
  5. Thanks for posting this. You've added one more thing to my list for the doctor when we go in a couple of weeks. My son had a sinus infection that was so bad as a toddler it resulted in a seizure. Now at age 7 he still does nasal washes 2x a day. I noticed a drastic decrease in PANDAS symptoms when we started him back on Nasonex. I too question if his sinusus aren't the root cause of his PANDAS. It will take some effort to convince his pediatrician to order a CT on his sinusus (she hates to expose him to the radiation) but I think, especially after reading your story, that it would be prudent. Thanks for sharing - you've no doubt helped dozens of other PANDAS kids with your post.
  6. I too have this same problem. I am very open with people about my son's condition. My son has been in a moderate flare up for the past two weeks with increased tics and anxiety. He recently joined a new soccer team with mostly kids he doesn't know. The first few practices were fine and then he started having this flair and he cried a lot during the next two and complaining that his stomach hurt (it was clearly anxiety caused). He was also having anxiety issues at school. My husband tends to get hard on him and tell him to dry it up. I also make him continue practice but I take a more sympathetic approach and try to boost his confidence. My husband pulled the coach aside to talk with him the other night. At the same time I was talking with some moms and sharing a bit about his condition and found out that one of the boys on the team had just started antibiotics 24hrs before for strep. My husband on the other hand didn't say anything about PANDAS to the coach - only that my son was having a hard time "adjusting" to his new team. I wish my husband would have been more open. Every practice since that day my son has been fine and I really think it was 90% PANDAS related.
  7. Can you PM the name of the Lyme doctor you are seeing in Denver? Heather
  8. Wow - we get the red ears here as well - I am sure it is food related but never was able to figure it out - bet it is the Salicylates. I thought it was dairy but taking him off of dairy didn't help.
  9. We too are a member of the group with classic PANDAS symptoms and non existant titers. The last time my son had strep the only symptom he had was extreme separation anxiety that sprang up out of no where. No classical symptoms - stomach ache or sore throat. We've checked titers 2x and probably won't bother again.
  10. My son was officially diagnosed with cyclical vomiting when he was 3. He actually started the vomiting as an infant. I have not been able to connect it with PANDAS. He was 4 when he had what I think was his first PANDAS episode. At 4.5 after 9 weeks cycle that wouldn't break, we started him on L-Carnitine and Natural CoQ10 (not the synthetic form commonly sold) and it has basically kept the cyclical vomiting under control. (Both meds are used to treat mitochondrial disorders which they think Cyclical Vomiting may be related to.) When he had a cycle his GI tract would basically shut down. He would just bloat and bloat for hours and then everything would come up undigested. He would have to be in the hospital on IV's for a week until it ran it's course. After he was diagnosed we had some luck aborting cycles with very high doses of Zofran. Usually CVS (Cyclical Vomiting Syndrome) is associated with a family history of migraines. Not so in our case except my older non pandas daughter gets bad migraines. CVS is another medical problem I wouldn't wish on my worst enemy!
  11. I went into labor with my PANDAS son at 28 weeks - had 1 mag treatment and was on Terbutaline and Niphedipine every three hours around the clock until 36 weeks when they took me off - he was taken emergency c section as he was breech.
  12. This was a really tough one for me as my son never had separation anxiety until he got strep this fall. We were told that it didn't matter that the anxiety was medically caused - you can't "feed" it or it will just get worse. Sending him to school knowing he was going to be a wreck all day was so hard for me. Thanks to a very understanding teacher we made it through one day at a time and the crying got less each day. It took months before my son got up and went to school without telling me he was too sick to go, wasn't going to get dressed, etc. Even after that subsided he still would tell me how much he didn't want to go but would go without a battle. The separation anxiety is gone - the problem is the intense fear that this feeling will come back - that he will get the separation anxiety again. Take things one small step at a time. First step for us was just to have him at school. Next step was to have him at school and be somewhat okay with it. Having him learning again and catching back up was several steps down the path. We have to make sure we don't go days in a row without leaving the house to go somewhere or it becomes harder for him. Even if strep is causing the problem I feel I need to push him a bit to brave those fears - I could see my son growing up into an adult that is unable to step outside his house.
  13. Thanks for the info on Omega 6's. I just found MorEPA Smart Fats at Whole Foods and was thrilled that it had the 7-1 EPA / DHA Ratio - 580mg EPA to 80mg DHA. However it does conain 45mg of Omega 6 so I'll probably start looking for something else instead.
  14. In the past my son has reacted when I had strep even though his test was negative so I think he just has to be around someone with strep to have a reaction and not even have to have the infection himself!
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