pandasstl

We just finished our 2nd IVIG and Dr. K recommended 500mg Augmentin 1x per day. I have read that not taking this medication 2x per day may not be a good idea. I have the ability to get either 500mg once per day or 250mg 2x per day. I don't know what's worse, having a lower dose but constant in the bloodstream, or having a higher dose and wondering about the possiblity that he is unprotected because the half life is not long. Any ideas?

Yes, I think it is very new thinking. Dr. K said he met with Swedo last week and discussed the issue. I don't know if it was specific to our son's history or if a different type of case may cause him to prescribe IVIG differently. I hate that about this disorder--but I am thankful we at least have a direction to go in--our son is 60-70% better, that was never going to happen on the psych meds he was on.

We consulted w Dr. K this week and he also told us no more than 1 HD IVIG (the 2 day one), only a booster though he didn't say what the dose was (I guess we'll find out after he gets our bloodwork). I am interested in the dose though, what dose are they recommending for your child's "booster".

Dr. K said that once we did the one 2 day 1.5 HD IVIG, that was it. that kids typically fall into 3 categories if it is not caught within the first week. 1. They need one HD IVIG and prophylactics. --then vigilance. He said his stats which he said were a small group-no major study scale were 90% improve after 3 months. For our case, we have definitely seen improvement, just have seen some tics which just freaked me out big time. 2. The kids who get one IVIG and then "stall" or start to slip at 3-4 months out. They recover 60-70% and that's it. They require a booster--not the major initial HD IVIG but he did not clarify at this time what that dose is. He said that for us, we needed to check for co-infections and immune panel which we drew like 5 vials of blood for today. He did not say if the booster should be repeated if in the future we should have a major problem. 3. Non responders to 1 or 2. Further Research if it is another type of infection or a true psych disorder. He said they have had one 24 year old come down with psychiatric symptoms after strep infection (nice). He also said the children with major headaches actually have the best outcomes. He said he had just had a meeting with Swedo I guess last week when he was out discussing some of this stuff. He was such a pleasant, brilliant man and worth every penny of the consult.

My heart goes out to you. We had the hallucinations (snakes) as well. Get to a PANDAS specialist ASAP. My husband is a physician and we tried to treat on our own (Lord knows we got no help from any other medical professional) and finally had our phone consult with Dr. K this morning. The best money we ever spent, he is amazing and we all (including my son) feel better about the future. Prayers are with you, get some help, it will not always be like this.

Sooo-we had our phone consult with Dr. K today. It was nice in a weird way to hear one of the leading specialists confirm that indeed our son does have PANDAS without a doubt. (which is good because we have already done IVIG (14 weeks post), steroid taper and antibiotics). Dr. K says we should only do hd IVIG once. He said he just met with Swedo --my son has a few tics which has freaked me out. We are going to run immune complex tests and a mycoplasm test and if he continues to decline, we will give a "booster" IVIG-not the HD IVIG but a different amount. Does anyone know what dose this is? I think he wants to wait until the tests come back but I am not known for patience anymore. My other question is for those with previous IVig experience. Did you see regressions after IVIG at this far out and if so, how long did they last? He is not sick that we know of (which is why we are running bloodwork to make sure).

I have the utmost respect for teachers, but people do NOT fully understand this disorder unless they have lived it. If it was 4th or 5th grade, I could understand--but Kindergarten where every kid is wiping their nose and playing together--no way--not worth it. I am an occupational therapist--forget the e--you can work on it more at home than at school anyways. Do what your gut says--don't be pushed into something trivial and regret it later.

It has been 12 weeks since my son's HD IVIG and he remains on 800 mg augmentin 2x per day. Overall-amazing improvements. We have our boy back!! Today, he went to the dentist and had his teeth cleaned as well as a very small cavity filled and 2 sealants. Got home and Whoa! Pandas rage for about 30 minutes (they used to be 2 hours). Just wondering if anyone has had a similar experience or is this a blip.

No one wants their child on antibiotics but for us, he is just not functional right now without them. It is not a difficult choice for us, the difference with him on antibiotics--we just can't go back and neither can he. Azith did not work for him--850 of augmentin 2x per day does. We give him probiotics and after 4 months of augmentin, he has had absolutely no sign of stomach upset--he's actually a bit constipated. We will probably pursue a 2nd HD IVIG, we have a phone consult w Dr. K set for Nov 29th.--we may try to wean off after 5-6 months after his next IVIG. He has told us (he is 7) that his whole year of being 6 was a waste because of Pandas and he can't have it back. I won't let him say that about another year--antibiotics or not.

Our son, 7, is gifted as well. Was reading at a 4th grade level at age 5 when tested by neurologist and was doing verbal negative integer problems in pre-K. All specialists just told us he was gifted/quirky. After 2 1/2 years of PANDAS, we now know what was going on. All cognitive skills still there-except the poor handwriting and some processing problems though as he gets better, I think this is more due to ADHD and is slowly disappearing. We are 9 weeks out of IVIG #1 with full strength augmentin.

Wow, my son has no fear of any other child knowing. After months of high dose antibiotics and IVIG, he has a new life and is happy to tell anyone not to get near him if they have a sore throat. He is 7. He has offered to his teacher to tell about his condition so others will know and the children will know how important it is to him that they tell their parents if they have a sore throat. He knows the potential consequences of coming into contact with strep and has no qualms about telling anyone with a sore throat to stay away. Our school had a child in an older grade report with strep, they called us immediately and we made sure he stayed clear of any combined classes and I picked him up 5 minutes early to avoid the dismissal crowd. We are very outspoken and open about PANDAS for his protection.

Our ds was manic on zoloft. After 11 months and 75mg, I read Saving Sammy and he was correctly diagnosed and we took him off. Antibiotics and IVIG are what worked for us with an occasional (2-3x per month) dose of ibuprofen on really hard days. I'd look for another doc before messing around with zoloft.

The first 2 weeks were miserable for us (we are now 5 weeks). It got slowly better and now we see glimses of what may be to come--hang in there. I read a study (small) that said 70-90% improvement between 12 and 16 weeks post IVIG. I keep a calendar and am marking off the days!! We used Advil a few times during those 1st couple of weeks and tried to make sure he slept and ate enough.

What antibiotic and how much were you on? We were on 900mg 2x/day suspension and recently hopped back up to 500mg 2x per day. Just wondering if Dr. K ever allows more than 10 days on 875 2x per day (if I can get him to swallow the pill).