nicklemama

My DS, now age 7, has been taking 0.5mgs of melatonin since Oct 2009. Without it, he was taking up to 2hrs to fall asleep. Every doctor he has seen has approved its use and even said we could give him a lot more. We've gotten the ok from the pediatrician, two neurologists, child psychiatrist, neuropsychologist and Dr Trifiletti (also a neurologist).

We see this. My DS is on long term antibiotics but still has "mini flares". I use motrin to subdue the flare. DS's PANDAS dr recommended it. I give the dosage for his weight every 6 hours, except during sleep, for two or three days. It ends up he gets 3 doses a day. Do not exceed 3 days. Use it only when you really need it.

Well, unfortunately, you won't find a great PANDAS dr in Michigan, that I am aware of. Most of us seem to use out of state PANDAS dr's and our pediatricians vary in their awareness, helpfullness, etc.... We have a Yahoo support group GreatLakesPANDASSupport. You can do a search on the Yahoo groups and find us. We are small but there is a lot of helpful information to be had. One of our members is from your area of Ohio. My son's PANDAS presented as raging first. There was ocd but we didn't recognize it at first and the raging and behavioral changes in him were so startling and awful and left us wondering what in the world was going on we couldn't see other behaviors while we were trying to deal w/ this monster coming out of him. Cindy

Is there a throw up emoticon to use for the big pharma article? FluMist set off a huge exacerbation in my DS(we did not know the behaviors were from PANDAS at that time). I reported it through the CDC's vaccine injury website. Never heard a word from them.

This was one of the tests ordered by Dr Trifiletti when we were pursuing my DS's PANDAS diagnosis. My son's came back perfectly normal but it needs to be ruled out. What a weird coincidence about the face of the panda!

Looks like many PANDAS symptoms to me. My son had many of those. I would not be detered from looking at PANDAS. If I had not pushed on and let the naysayers have their way, my son would be in a terrible way right now. My son's psychiatrist actually told me, at the last med check appt, that he commended me for my diligence and commitment to keep looking for answers. He's the one doctor my son has, aside from Dr Trifiletti, that is fully on board w/ PANDAS. I would not accept any thing less than a full evaluation for PANDAS. My son has never had a diagnosed case of strep. Of course, he was never tested for strep when sick either. He has had ear infections and each time, he had behavioral changes (and recovered) until fall 2009 when everything hit the fan.

Sarah- I could have written your post many, many times, except my DS has no siblings that have to endure a rage. It took us a year to get a proper PANDAS diagnosis. My DS has, thankfully, done very well on high dose abx. He hasn't raged since we started abx in mid Oct. There is hope and he shows no signs of brain damage. He's in first grade working a couple of grade levels above. Aside from some lingering anxiety and ocd (which do not have a major impact on his life) he's pretty much back to the little boy we once knew. All I can say is hang in there. Treatment will help.

I just finished reaading Cure Unknown by Pamela Weintraub about lyme disease. My son doesn't seem to have lyme but this book was a real eye opener about how diseases get recognized and treatment established. You will not believe it.

Tammy- Thanks for updating us. I look forward to your updates and wish you all well. Hang in there.

We did OT from last June until Dec. It seemed to be working. We had "exercises" to do at home each morning and evening to help w/ all the issues. My DS was mainly a sensory seeker w/ lots of hyperactive like movements. Once he was diagnosed PANDAS and started abx, all those sensory issues disappeared and we discontinued OT.

I am really sorry you are going through this. We have lived this life and its not pleasant. Before I understood it better, it was nearly my undoing. We went through this for a year before we got the PANDAS diagnosis. My DS was prescribed lamictal last summer and it did help but not completely. Treatment w/ abx is what completely shut the raging down. There is hope. You just have to find the right combo of treatment. Hang in there the best you can. Many of us here can totally relate.

No words of wisdom, just support. I've been there. The raging was the first clue that something was terribly wrong w/ my son.

My local LabCorp would not do the Cunningham test. I didn't know to call the national customer service line. I ended up taking my DS to my local hospital's lab and they drew the blood. They did not spin it either. Its helpful for Dr C to have it done already but not required. They will spin the sample when they get it.

We've got a small Yahoo group called GreatLakesPANDASSupport. We'd love to have you join. Most of us are in Michigan.

My DS's(age 7) ASO and antiDNAse B tests came back very normal, as well. His main presenting behaviors were severe separation anxiety, anxiety, irritibility to the point of rage and OCD. He developed tics one year after his first presentation of what we now know is PANDAS. He was not given blood tests ih the beginning. He was tested just before his PANDAS diagnosis. I took him to the pediatrician, a neurologist, started seeing therapist, went to a psychiatrist and put him on meds. After one year and a neuropsychologist telling me my son had Aspergers and bipolar, I called Dr Trifiletti for a phone consult. We started DS on biaxin and he started showing improvement w/in a week. He's been on antibiotics continuously since Oct 2010. He's about 90-95% improved. I recommend you call one the PANDAS experts for a consultation or appointment. His Cunningham test came back in the low range of PANDAS, given after we started antibiotic treatment. His Anti D1 was high. D2 was at the top end of normal.

It costs me a trip to Toys R Us every time my DS gets blood drawn. I'm not above it either to get the job done. Can you set up a plan where if meds are taken for x amount of days, some sort of reward is given? Now that DS is stable on abx, its not hard to get him to the dr. Before abx, I did it on a wing and a prayer.

Thanks. Yes, bid is 2x a day. My son takes 50mg twice a day. I'm encouraged now to wean him off lamictal. I won't start until school is out though. I really don't see any side effects at the moment.

We saw some improvement during the first week. It took nearly 2 months for the tics to disappear. He still has some residual ocd and anxiety and he's been on abx since Oct 2010. He's about 90-95% better. I'd say he was at about 50% at the one month abx mark.

Glad to hear she did fine going cold turkey. That gives me a lot of encouragement to take my DS off lamictal. What dose was she on? My DS takes 50mg bid.

I'm using Florastor 2x day and Culturelle 1x day for DS7 55lbs.

My son has been on lamictal for nearly a yr now. Prescribed before we knew about PANDAS. He was diagnosed w/ Intermittent Explosive Disorder. Well, that certainly fit. Now, he has no explosions after abx treatment. I have been considering weaning him off lamictal. I spoke to his psychiatrist about it and we may do it this summer. I'd be very careful about going cold turkey w/ something like lamictal. I'd really try and wean from it. Lamictal did keep my son from all out raging but he would still be very aggressive and irritible. Abx took that all away.

My son has done really well with biaxin and augmentin. He was given azith prophylactically and did some back sliding. However, he was only taking azith twice a week. The others was high dose for treatment. Maybe there is something w/ insurance companies and azith. I could only get 8 250mg pills at a time for azith. Currently, I have 30 days supply of augmentin. That's 60 500mg pills. Go figure.

My DS starting getting extremely red eyes back in the spring which coincided w/ an exacerbation (before we knew PANDAS). First, the ped said a virus. Two weeks later, it came back. She changed her mind and said allergies. She prescribed Patanol(an allergy drop) for his eyes and it clears it up. Currently, he's been having red eye issues for several weeks. I can't stop the drops w/out the redness immediately coming back. When his eyes are red, he has absolutely no other symptoms of allergy. No sneezing, no runny nose and his eyes do not get watery, just bright red. Do I need to say it freaks the school out because they are so pink eye sensitive? UGH.

We've seen two neurologists. The first one told me if I'd just be more consistent and firm in my parenting, my DS would not be acting the way he was. I went there before I knew about PANDAS, thinking he might have a brain tumor as his behaviors like raging, etc... came on so suddenly. All she did was a neurological screen in the office. The second one I saw after PANDAS diagnosis, after ticcing started, while waiting on Cunningham test results. She was very interested in Cunninghams work and the test results. She also did a neurological screen. No meds offered or suggested. I sent the Cunningham results when it came in. I've heard nothing, my son is doing well on abx and we haven't been back. This neurologist told me the practice has seen some PANDAS kids and she cracked opened the door to possible IVIG by telling me she's been talked into IVIG by some parents for things that shouldn't have needed IVIG but they got results.

We have four cats and no definite trigger identified. All titers, myco P included are normal. Interesting. Is there a way to know if your cats have myco P? Are they sick w/ URI's? My cats have not had so much as a cold in all their years (knock wood). The oldest is 12.