blake

My son woke up a different child with PANDAS on Jan. 11, 2007. He has had IVIG now 2 consecutive days monthly for four months and is approved for 2 more months. The worst part of the procedure is getting the IV started. A home healthcare nurse comes to the house which is very convenient. Last year he did have 2 consecutive days at the hospital and did fine since I took his favorite movies and toys. At the hospital we were there a total of 7 hours each day. A lot of waiting for the IG, waiting to get started, being observed a while afterward..... At home, I already have the IG shipped to me and ready and all of the supplies ready for when the nurse walks in my door. After getting the IV started, he receives a saline drip for 15 minutes, then the IG for a little over 3 hours, then 15 more minutes of saline drip. The nurse checks his vitals every hour. His arm is wrapped on the first day so he can keep his IV in over night. I pretreat with tylenol to prevent headaches. I now pretreat with zofran for nausea because he did throw up twice after the first treatment. He now has no problems. I have seen no significant progress. But my son is more complicated - he has autism (was high functioning until this), his anti DNAS B titer was greater than 2720 when he was diagnosed, and he ended up unable to walk, lost all daily living skills, lost fine motor skills, and is now mute (was very verbal). He also was aspirating due to muscle incoordination with his throat and now eats solely through a feeding tube. He was diagnosed with sydenham's chorea in addition to pandas, though they do overlap with symptoms of OCD and tics. He now walks, but still in diapers and fed through a tube. His OCD is pretty close to the level before PANDAS and the tics are mostly facial tics still. I was told IVIG would take more treatments due to his autism (per Dr K). So as far as success or not, most probably can't compare because of the many other symptoms all related to strep throat. He is on penicillin until he's 21 and he sees a DAN doctor for supplements and different meds. We try everything and will continue until we get our son back. He had his tonsils out 3 weeks ago which were chronically inflammed due to repetitve strep. Hopefully that will help. Oh, also, his strep titers never returned to normal (ASO did, but not dnase and I have heard they would not be accurate unless it has been 3 months from his IVIG. After two more monthly treatments, we will look at what progress was made, and consider more treatments, or plasmapheresis. Has anyone had that? I know there are doctors out there who claim strep can't cause brain inflammation but I don't believe because how can all of us with overnight changed children and a recent strep illness be a coincidence? He has seen 5 neurologists of which none are helpful. He did recover fully last April after a 5 day steroid burst which I was told meant IVIG would work because of the significant improvement shown by that burst. So I'm still hoping. I never imagined strep to be the monster it is. I don't know if this helped at all, but at least you know the procedure of the IVIG.

Michelle, I have an ICD-9 code book and 333.3 is Tics of Organic Origin - Repetitive, spasmodic movements or twitching that occur in an irregular fashion and resemble voluntary movements and are of nonpsychogenic origin. Also, 333.2 is Myoclonus - the sudden shock-like contractions of a muscle or a group of muscles. Just in case you wanted to know the exact wording of the codes he used. I always like to know.

My son's tests showed yeast overgrowth, and we also tested him to determine which antifungal worked best. It was diflucan for him instead of nystatin. I saw no difference after 30 days on it. Good luck with it- hope it helps.

When he had a double ear infection last year, I stopped the pen and they put him on zythromax. There was no change in the pandas. Then he went back on the pen. This year, my other son was diagnosed with strep, so they put my pandas son on keflex (might be spelled wrong) as a precaution and his ocd got worse. They switched it after a few days to zythromax and he remained worse until he stopped it. Also, two weeks ago he had bronchitis and they treated it with amoxocillin which didn't have any effect on the pandas. His DAN doctor mentioned IV antibiotics, but didn't think they would work since they have had no effects orally (I think that's his line of thinking). i had never heard of IV antibiotics for pandas, though I think my son had it in the hospital last year to treat his aspiration pneumonia and he went downhill. It's hard to know what has an effect and what is just the "nature of the beast". I think I have read on here that omnicef was the most helpful and he hasn't tried that. Is that right? What is the best antibiotic to knock out some symptoms? I just have that experience with what he has been on. My son's pediatrician did contact Dr. Swedo last year at my request (she wouldn't talk to me) and sent requested info for her review. But her office responded quite rudely that they don't help pandas kids anymore because their research was finished. I haven't tried Dr. Murphy yet. Thanks

On the day of onset of Pandas 14 months ago, my son also had a personality change and took on the complete opposite personaility. His tics/involuntary movements and ocd seem typical pandas (except his need for feeding tube and being wheelchair were extreme) and now he has severe OCD but few tics. What doesn't seem typical and what no other doctor understands is his personality change. He used to be a perfectionist, and now he doesn't want to anything right. He used to be upset to lose games and now he plays to lose and very upset to win. He used to be upset to see children cry and would go ask them if they are ok. Now, he steals their toys and laughs when they cry. He laughs when other children get hurt. He won't talk normally now but tells me "My brain won't let me talk". It's not exactly oppositional defiance, but similar in some ways that he'll break house rules and laugh. Ask him the color of the sky and he'll say any color but blue. There are millions of similar instances of answering the opposite/incorrect way. He is a different child. Has ANYONE seen this type of personality change? He does say "My brain is backward" sometimes and he's upset about it. I don't know if that is related. When a steroid burst cured him temporarily last year, his ocd/involuntary movements/opposite personality all disappeared and eventually came back but not so much the involuntary movements. He is completely opposite and it's awful. It seems this new personality has been embedded in him. Anybody seen this at all? I try to google it and I have never read any other child doing this. I assume it pandas related since it all came on together. I know this is a forum for tics, but it is the most active forum for Pandas so I sure hope no one minds me asking this question. I won't ask any more that aren't tics related. We're still trying to get IVIG and I hope it will change his personality back. Is it a form of OCD to be opposite than he was? Thanks so much

Thanks. We don't have a Trader Joe's but you inspired me to find it elsewhere - Amazon! And it was marked down! My other son takes 1 1/2 tsp fish oil so I assume the dose is the same for salmon oil. (He can't take the soft gels). I will try it - and anything else suggested. Thanks so much.

My son is allergic to fish, but the doctor did mention he wouldn't be allergic to salmon oil. But he didn't say he needed it when I asked. I'm sure he got that off of one of the many many tests run. I've looked for salmon oil anyway but it wasn't at my local healthfood store. I really appreciate everyone's responses. I'm sure everyone knows the sheer desperation when going through this and any info is greatly appreciated. Thanks all!

His DAN dr. suggested b12 shots later for methyl support, but it wasn't an immediate concern. His OAT did show yeast, and he has been on 2 30 day runs of diflucan (just finished) since Oct. and he has been on probiotics since Sept. Dan! is the one saying the IVIG for 12 weeks will knock out the PANDAS. I highly trust him, but I wondered if others had seen the severity similar to my son's. I'm worried it might be something more, but I always worry. I don't want to repeat last year (3 hospital stays, one included psychiatric institute). I don't know what is from Pandas vs. Sydenham's, which his doctor said they are pretty much the same thing. Thanks so much!

Yes, he has been gfcf for 8 months.

I have read a lot of the Pandas posts, but I have a question about the severity and if it is also Pandas. Last Jan. 11 (2007), my son had sudden onset of Pandas/Sydenham's chorea. He started stuttering, having trouble walking, involuntary movements, bizarre behaviors, and severe OCD. It took two months to diagnose, but his antidnase b was off the charts at above 2720. Antibiotics did not help him at all, but he went on prophylactic (sp?) penicillin from Mar until Dec. A steroid burst in April cured him temporarily so the next step was IVIG which did nothing, and then IV steroids which did nothing. He was severe - ended up unable to even stand, had a feeding tube, and was in diapers (he's 10). The physical problems were more (I guess)from the Sydenham's due to muscle incoordination. Last month, he no longer needed a wheelchair, he began eating and drinking, still in diapers, still has significant OCD, the only tics are vocal tics. He was not recovered yet. Then on Jan. 24, he had another sudden onset of ocd severity. He didn't have strep but his brother did so he was exposed. His aso has been normal for months, but the antidnase b is 463. It has slowly been going back down and has never made it back to the normal range since last year. His DAN said Pandas cycles (I thought there needed to be an active strep to have another cycle) and that he needs IVIG once a week for 12 weeks to build up his immune system to knock Pandas out, which we are working on getting approved from insurance. His pediatrician mentioned ordering an MRI (he already had two normal ones last year and 3 normal EEGs). My question is: He now has severe OCD with licking everything (walls, pictures, windows, etc) and repetitive rituals usually involving licking. He cries out "help" and "my brain is mixed up" so I know he can't help it and wants to stop. He has autism but is verbal, but can't explain to me what he means by "my brain is backwards", and why he cries "I need to go to the doctor". He also cries out "my muscles are moving"which they aren't which he did last year a lot. I assume he feels some sensations, such as pins and needles. Is that Pandas? I haven't read about any other licking problems. He appears to be going crazy, yet he still demonstrates he has cognitivie skills and receptive language the same as before these past 14 months. He is a different boy except after the steroid burst for a week or so. Is this consistent with his Pandas or might an MRI reveal something else that could be wrong? The Pandas is not in question (it seems pretty classic pandas). Does it make crazy bizarre behavior such as this? What does he feel in his brain? Just wondered if other kids who can communicate explain what they feel. I miss my son and can't wait for the IVIG plan to begin. At least he is walking, eating, drinking, and no motor tics currently. But mentally he is a mess. Thank you for any help at all.