nicklemama

I voted normal childhood illness but in fact, I'd really say he had less than ave. He was/is rarely sick. He's taller than ave, motor skills always ahead, late talker. He is survivor. He spent the first six months of his life in a Russian orphanage. Now, he's battling PANDAS.

I'm pretty late to this game but there is hope. DS was neurotypical until age 5, when PANDAS hit. We spent his yr in kindergarten trying to figure out what was wrong w/ him. He definitely did not continue to socially mature, and may have actually regressed. He was and is a very bright boy. His saving grace in kindergarten was the fact that academically, he was so far ahead before his illness, he did not have any academic trouble. His social skills did not continue developing. He started 1st grade academically ahead. His teacher had a lot of concerns about his social development during the first quarter of school, as did we. He also had ocd, severe separation anxiety, emotional lability and started ticcing. He was evaluated by a neuropsychologist, who we traveled from MI to DC to see. He was given Asperger's and bipolar II diagnoses. While I could see the Aspergers behaviors and to a lesser degree the bipolar, I could not agree he was Aspergers. He just wasn't always this way. Diagnosed a week later by Dr T w/ PANDAS. The abx and 7 months later, the IVIG, have totally turned him around. The one thing he still lags in is social skills. He's made dramatic progress in the year since dx but he still has a ways to catch up. He sort of missed out on nearly 2yrs of social development and it still shows. He'll be 8 in Dec. He had PANDAS for about 1.5yrs prior to diagnosis. Its a yr since dx. He seems to be developing those pathways now. He remains academically ahead of his peers.

We haven't tried anything else. DS is doing extremely well right now (knock wood). I wouldn't discourage anyone from trying lamictal, just that it doesn't work on OCD for everyone. That said, our kids are not all the same. Some have underlying, diagnosable immune dysfunction. Some have very high titers. Some are sick w/ strep frequently. Some present w/ OCD, some w/ tics, some w/ both. Some, like my son, are otherwise very healthy,rarely sick, no positive cultures, no positive titers. I believe strep is the culprit for my DS, as he reacts when exposed to others w/ strep. He was, however, vaccine injured by the regular Flumist in Oct 2009, which set off his huge exacerbation. The two things that have given him such good function back are abx and IVIG. That cannot be said of every PANDAS child. There is so much more research to be done. And, he's only an exposure or illness away from going right back where he came from. Of that, I am very aware.

DS has been on lamictal for 16 months but he's in the process of weaning off it. He's got about a month to go. It's been a long weaning process. What we saw was a reduction in anger and irritibility. Didn't do anything for OCD, separation anxiety, anxiety and the multitude of other symptoms he had. The only thing that helped those was abx and IVIG.

My DS went a yr w/out diagnosis and that was the worst yr of our lives. I would never want to revisit it again. My DS has been on abx for a yr, w/out interruption. He is currently on prophylactic dosing post IVIG and will remain on it until at least next May and I may very well keep him on it for a longer period of time. I agree w/ Vickie, it sounds as if there are symptoms that are still significant in her life. I'm no doctor, but based on our experience, I would consider prophylactic dosing to possibly ward off another major episode. Your doctor is worried about messing up her gut flora. I would be more concerned about her brain and the effects of PANDAS. I haven't seen gut issues in DS, after a yr of abx. Although that is a possibility. He takes Florastor 2x a day and that seems to be working for him.

DS 7.5yrs has been on abx for 12 months, ever since he was first diagnosed. Has been on continuously, although not w/ the same abx. He has taken Florastor, 2x day, every day, ever since. No problems w/ abx. He started on biaxin, after two months in which he did very well, was switched to azithromycin. Took that for a month, then took augmentin for 2 months, then back to azith. Took azith until he had IVIG in May, then started augmentin again. Been on augmentin since May. He was switched around when he was showing symptoms and flare up of PANDAS. My DS has never had a positive culture or titer. He is rarely sick, like MomWithOCD reports in her son. In this past year, he had a stomach virus of throwing up, where he did not have any increased PANDAS symptoms and he had a fever in early August, after being exposed to a family whose kids had strep. He had increased symptoms and I increased his augmentin for 7 days. We did IVIG because we he kept having flares on abx and while he was doing much better, he still had a ways to go in getting close to returning to the boy he was. He went one full year untreated before finally being diagnosed. He is not routinely tested to check blood values. His ped did a cbc w/ differential in July. He is being treated for PANDAS by Dr K, currently. He was on treatment dose for 8 months. He's been on daily prophylactic dose for 4 months.

PANDAS is on the news in Ohio.

I don't know a thing about the nicotine patch but wanted to warn you about reducing the lamictal. My DS is currently being weaned off lamictal. He was on 100mg a day (50mgbid)to help reduce anger, irribility and anxiety. I don't think it did a thing for the anxiety. If it did, it was such a small help it went unnoticed. Anyway, back to the point. Pdoc started the reduction at 25mg am and 50mg pm. That did not work well. It caused anger and irritibility in DS. I balanced the dose at 37.5mg bid and he did better. Next reduction was 25mgs bid. More anger and irritibility. I had a talk w/ pdoc and the last reduction, two weeks ago, I took him to 18.75mgs bid. This reduction was smooth and seamless. I don't know if he's now reached a point where the dose is so low as to not be affecting or if the better results is because we didn't jump down so much and went a week longer before reducing. We are going 3wks between reductions now. Pdoc ordered it every 2 but that didn't go well. My experience says go very, very slowly and take a lot of time between reductions. If you are avoiding setting off seizure activity, I'd think you'd want to go even more slowly. My DS developed tics but they came a yr after first major episode and 4 months after starting lamictal. They went away first after starting abx. Came back w/ a small exacerbation. Went away w/ an abx change. Came back after IVIG and then went away and haven't seen them since early July (knock on wood).

This is great info to know. Is there a box or something on the form?

Labs will not release results. I've tried. You must get it from the requesting doctor. The way around this is to go to a hospital w/ your lab requests. They will release results to you.

I pm'd you. Check the top right hand corner of this page to find your pm's.

If I had a child w/ a tick bite and a bullseye rash, I'd get on the lyme train and start from there. My DS is PANDAS and has never had a positive strep rapid test or culture (but was never tested when sick) and he has never had elevated blood titers. None is required for a PANDAS diagnosis but it sure makes it easier. My DS had a neuropsych test. Cost us $3000 out of pocket. If I had it to do again, I would have saved my money. Yes, we found out things from the testing. The educational portion was valuable. The psych part was not. Neuropsych's are not MD's and they will not recognize PANDAS. We were told our DS had Aspergers and mild bipolar II. Now how do you have mild bipolar? Anyway.........a week later, he was diagnosed PANDAS. Save your money for Lyme or PANDAS treatment. You are going to need it and the neuropsych testing is not going make any difference on lyme or PANDAS treatment. DS's neuropsych testing lasted about 4.5hrs. I don't know how he made it through.

I would contact the NIH and see if your child qualifies for the PANDAS/IVIG study.

At the conference, she made it clear that not only was cam k significant, but so was D1 and D2 (one of the Dopamine's being high would indicate that the child would have more psychiatric problems, and the other would be more neuro.) I asked her what it means if both my DS's numbers were high (both Dopamine 1 and 2), and then I kind of finished it myself...both neuro and psych problems are bad for him) I would suggest emailing Dr. C. about answers to your questions. I don't want to assume that I know for sure that it is 100% diagnostic of PANDAS/Lyme/SC or just that it definitely shows something. I know that it is significant enough for her to start the process of trying to offer it commercially. She may not answer you directly, as I know she is working on (or maybe waiting for) publication of the findings. I know that publication, once submitted and accepted in these major journals, can sometimes take a year to get in. And, the other question...no it is not commercially available, yet. Dr. C. just finished a 1000 child trial with the test. Wow, that is interesting. DS's D1 was high and he has more psychiatric symptoms than neuro, although he had tics, hyperactivity, some movements. His D2 was normal. I also read somewhere that the antitubulin were somehow connected to tics and my DS's antitubulin was high, also.

I'll have to start by saying my DS's initial symptoms were emotional lability and separation anxiety and it was pretty intense and it happened over night after a flumist vax. I have very colored glasses about this as a disclaimer. I'm guessing if this is PANDAS (and I'll take a bet that it is), you'll see more symptoms/behaviors cropping up. The parents may not even recognize other symptoms, at this point. My DS was hoarding and had ocd and I did not recognize it right away. We knew it was weird but I did not even report it as symptoms, in the beginning. All I could concentrate on was the separation anxiety and the tantrums/rages. I could have avoided many tantrums/rages if I'd realized it was ocd setting it off and handled it better.

When he is healed, he will be compliant again. I can attest to it.

BCBS MI PPO. Oakbrook in Chicago was in network. I called for preapproval and was told IVIG didn't require preapproval. I had absolutely no hope they'd actually cover it but they did. Did not cover Dr K's fee.

Its common. Dr K calls it peeling back the layers. We saw lots of bumps in the road. DS developed a pretty intense shoulder shrugging tic after IVIG. It went away about 6 wks later. He is almost 6 months post IVIG and doing pretty well (knock on wood).

Yes, I've tried the same dosage melatonin as my DS, 0.5mgs. It makes me drowsy and if I wake during the night, I fall right back to sleep. I've never taken it on an extended time period, though. DS had terrible nightmares and slept horribly before diagnosis (and we already had him on melatonin). The sleep issues have greatly improved since diagnosis and treatment but the problem of falling asleep is still there. He's no longer crying out and yelling in his sleep and waking from bad dreams.

My DS has been taking 2000iu of vit D for a long time. Can't remember when I started it but it was post PANDAS. I never related it to any symptoms. He's nearly 6 months post IVIG and doing really well (knock on wood).

I sent you a pm. Look at the top right hand corner of the page to access.

I'm going to throw this out there, considering the frequent stomach aches. Have you had him tested for strep? A child can have strep and not have the 'classic' signs. I'd have his throat swabbed for a rapid test and culture and also ask for antistreptolysin O (ASO) and antiDNAse B titers that show past infection. Stomach ache is a frequent complaint in children who have strep. Some of his behaviors are very familiar to me. My DS has PANDAS, not ASD, but was given an Aspergers diagnosis just before we figured out it was actually PANDAS. Its certainly worth looking into, if you haven't already.

Is there any way the surgeon or doctor would put him on abx until the tonsillectomy? I would discuss it with them. That's not very far away. You may have to push for it. My DS is also not aware of his face touching. Interestingly, he also had eye blinking and shoulder shrugging. At one point, he had throat clearing and head turning too. Its very distressing to watch and feel helpless. Just know you are on the path for treatment. Dr B will help you get this turned around.

My DS has had these too and I thought they were ocd in nature rather than tics. He's had tics, too. He still does the occasional face touching ocd. Your son needs treatment right away. Use the above doctor list to try and get him in to see someone.

My DS has problems w/ teeth cleaning and losses. Dr K recommends treatment dose abx two days before and three days after any dental procedure (I just looked at his note). DS had his teeth cleaned a few weeks ago and we did not see any flares afterward. This is post IVIG. He was on treatment dose in the spring, before abx, and he had flares w/ both teeth cleaning and an extraction of a baby tooth. No explanation for the better experience this time, other than he's post IVIG.