Nita

Great video. In the video the doctor talks about patients taking lipids (not oxidated) and antioxidents in capsule form. Does anyone know, specifically, what this would be?

Dr. K. wrote a prescription to test our son for blood testing for mycoplasma pneumonia. He also is agressive. He said he'd tell us when to have the test done. He is allergic to penicillin and is currently on 500 mg. of arithromycin. He had pneumonia when he was about 2 and is now 13, so I wonder if he's had PANDAS that long.

We were told by Dr. K. that our son, 13 yrs, has had PANDAS since he was about 3 or 4. The overnight OCD didn't show up until he was 12. Before that he had all the other PANDAS symptoms, worsening over time, such as ADHD, separation anxiety, tics, regression in age appropriate behaviors, regression in writing, etc. Quite possibly there are other kids with symptoms such as our son and the OCD never appears so they just treat the ADHD, the learning problems, the behavior problems - which they did with my son and his anxiety just kept increasing. Just a thought. I remember Dr. K. told us that he has some students who estimate the number of PANDAS kids in the millions (not sure if that is worldwide.) We didn't ask how they arrived at the number. I was looking at the history of Tourettes (which my son was diagnosed with when he was 9 - if only I had known about PANDAS then - or had his neuroligis), I came across this: In 1884 Charcot gave a new assignment to Gilles de la Tourette, namely, to reclassify all movement disorders, or, to "sort out the chaos of the choreas"7,9,12,14. In the same year Gilles de la Tourette published his first important article on three strange movement disorders, in which he discussed the cases known as "Jumping Frenchmen of Maine", Latah (described in Malaysia" and Myriachit (first described in Russia)7,9,12,14. These diseases, which are now classified as startle diseases, were considered at the time to be variants of chorea (as opposed to what was called true chorea, or echorea) and to have an hysterical etiolo Interesting that tics were first classified as choreas. Full article here: http://www.scielo.br/scielo.php?script=sci...2X2008000600035 m

The nurse has a DVD player, but no TV. Laptop with games is good. You can get online there (ask for password) and play online. Advil in casse of a headache would be good (our son had one). Of course bring things for you to do too. You are stuck in a room, though you can leave for short periods if you need to. We stayed at the Marriott Courtyard across the street and liked it. There are lots of restaurants in the area and a Walgreens down the street (in case you need to fill a prescription).

He has had IVIG with Dr. K. He had him on 1000 mg. of clarithromycin for 2 weeks post IVIG. I saw improvement first week, now 2 bad weeks. Dr. K. says this can happen, esp. with older kids. I'm really hoping things turn around soon. I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

Thanks for your support and input, all. I have no one else to speak to about this - no one would understand. He is on arithromycin 250mg a day. He is allergic to pennicillin. He was on a stronger dose of a different antibiotic (forget name) for 2 weeks post IVIG. I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

After waiting 6 weeks for appt., took my 13 year old son to new psychiatrist. The last one had him on Cymbalta for 10 weeks and it did very little to help OCD. Gave him much information on PANDAS which he read. Gave him EEG report with neuro report saying my son did not have ADHD, did not have a learning disability and told him I was told orally it looked like a brain pattern of PANDAS. Told new psych. I thought ds should be on Zoloft again as his OCD was under control with this. Told him about ds's issues with anger and impulse control and agression (all when OCD is challenged). His opinion was he should be on Intuniv for the anger and then Zoloft after weeks. I disagreed as I think his OCD needs to be under control first (it is debilitating in that he can't go to school or much anywhere). He said it didn't matter really because he thought he should go to a treatment center for violent and agressive adolescents. It's one where they send the worst cases and I know that some have criminal records, history of being sexually or physically abused which he was not. He said he needed help with his impulses. They do not treat OCD here. I would love to take him to an OCD treatment center, but they require him to want to go. Due to separation anxiety, he does not want to leave home. He had IVIG 3 weeks ago and I am waiting (and hoping) to see some results. My husband is ready to admit him next time he has an outburst (would have to call police to physically take him). I did talk the doctor into giving me Zoloft. I am just so torn, so worn out, so heart broken and confused. I want to do the right thing. My fear is that he will go to this facility, they won't understand OCD or PANDAS and his anxiety will increase and OCD get much worse. Yet, his OCD is controlling us and he does have panic attacks where he gets agressive if we challenge him. This is just sooo hard. Should I continue to hope and wait or give up? Do you think such a facility would be any help at all - or make him worse? I am sitting here having a good cry right now as he is watching TV (what he does almost all day long).

We stayed at Courtyard by Marriott right across the streeet from Oakbrook Surgical. Our son cannot tolerate people very well either. We asked for a first floor room next to an entrance/exit so we didn't have go through lobby or use elevator/stairs. We were able to park right by the entrance and go right to our door. We got a 2 room suite which was very nice because there was an actual door between the 2 rooms. Our son sometimes cannot even tolerate us being near so it worked great - at least as well as could be expected.

My 13 year old son is apparently a lot worse than your daughter. He cannot even attend school. His post IVIG are behaviors we've seen before - it's just that I see him improve one day and the next he is horrible. I'd say good and bad behaviors - more intense.

First, a big hug. Second, it's what we are seeing with our son too, and we spent the day wondering if we should take him to the hospital too. Our 13 year old son had one a couple of weeks ago. It was his second one as well. He was being demanding, angry and threatening to harm himself or us if we didn't do as he said. Now he's up playing a video game and laughing, totally forgetting about OCD. Dr. K told us last time this was normal, but it is so hard to go through. Hope things get better soon for both of our boys. I have been giving him Advil and it helps a little, although I know it's not recommended for too long a time due to liver damage possibility.

Our son did the steroid boost with Dr. K. and we saw a different kid the second day. He was just so amazingly calm and clear thinking. I remember having a philosophical discussion with him and he did things with us that took concentration without physcial movement, like watched an entire football game. That boy disappeared again - I think a couple of days after we stopped the steroid, but he still had some good days for about 3 weeks - just not as long lasting or dramatic. Then he had the IVIG and he improved after that for a couple of months. Our son is older though (13) and has a bad case of PANDAS so maybe why the effect wasn't as long lasting. He's already had a 2nd IVIG and will probably need more. He's going through some rough days now (2 weeks post IVIG) after a really good first week post. I know the first 6 weeks are see saw, but it's very hard. Sure hope things start to turn for the better soon.

Looks as though we've down a similar road. Zoloft made his ADHD worse, including not caring about rules or really anything, no motivation. Luvox decreased his executive function even more and this is when anger was creeping in. Risperadol made him angrier. Haliperidol - raging anger - followed by an evening of paranoid thoughts (someone is filming me thru the window) - psychiatrist didn't beleive this one so reason we are switching doctors. He did give him oxcarbazepine for anger and that actually seems to have calmed him down, but it also seems to slow his thiking process. Hoping to wean him from this after we wean the Clonopin which makes him hyper, decreases executive function and short tempered. Dr. K. said PANDAS do not respond to meds like other kids so you are right about that. What I'm hoping is that the IVIG works enough to just have him on Cymbalta (which seems to work a tiny bit although I think it is also causing him to be not motivated) and then with 3rd and even 4th IVIG he starts to recover. Guess I'm always hoping for the best. trial and error for every kid reacts differently do these type of drugs. prozac worked like wonders for 5 months before it went down the hill with horrible side effects celexa did not do anything paxil worked very well( in fact it was best ssri to my son's ocd symptom, was very happy for a year but rage began to crept in around age 13, 7th grade---I suspect it was from hormone as well) discontinued because paxil cannot be used with other med. zoloft-----began this med when abilify was added to address my son's rage, odd symptom. strattera made my son 10 times worse with his ocd risperadal made my son very angry abilfy made my son gain a lot of weight and made him very sleepy even at a very low dose. I would give him 3-6 mg every night and he still fall asleep in his class room the next day even with help of concerta. very very powerful med. I am not against medicating a child if she or he needs. ( if there is anybody who talks against this type of med, she does not have a child like mine.) But I advise you to be on guard. Psychiatrist can not just come up with a medication that are not there to begin with. He could only treat your child with what is available in medication pool. Pandas or not, Dr. could only address its symptom as it is like any other ocd or odd symptom. Educate yourself about these meds and make a chart ( food, vitamins, med, illness---stressful events). Difference between pandas child from other child with same symptom would be pandas child is involved with strep infection while others are not so you need to factor in you child's infection into the whole picture of medicating your child( which no psychiatrist is likely do ) I am sorry if I sounded like a teacher lecturing but I really wish you and your child best and don't want you to repeat my mistake which was to sit on a combination of medication that was not really helping my son but did not know what else to do. thank you

Now that you mention it, he only had 2 mild asthma attacks this winter and no seasonal allergies this spring. He did have allergy shots for 6 years, but those were stopped in 2008 and he still had some allergies over that winter/spring (before IVIG). Guess I've been so overwhelmed with all his other issues, I didn't stop to be thankful for that. Now his mlk allergy (severe - requiring EPI shot) is still there, but I think the cause of that might be different. Yea, hope he does start getting better. I'll keep you all posted.

I completely understand that. I too was always reluctant to treat, thinking he would get better. He had bad facial tics when he was nine and was diagnosed with Tourettes by a neuroligist But then, they slowly went a way (lasted about 4 month during a stressful 4th grade - teacher who punished him a lot for his ADHD behaviors). Then he seemed so much better - though looking back his ADHD behavor was increasing along with writing skill regression. Summer of 6th grade he had sudden onset, overnight OCD. One day he was fine, the next he was totally debilitated, everything was unclean. He struggled back to almost normal, only to hit even harder the following summer. OCD returned with a vengeance within 2 weeks time, this time with anger and longer rituals. No one told me about PANDAS, of course. I wonder how much better things could have been had the medical community been more informed.