Burnell

My DD12 was one of the 10 in the study. You must meet the protocol. Ages 4-12 The Biggest Reason kids are NOT being accepted: YOUR CHILD MUST NOT HAVE BEEN TREATED WITH STEROIDS, NO PREDNISONE! OCD or tics or OCD with tics -- all would be considered. Our DD relapsed after 2 months of the IVIG, no one knows why.

Our dd12 is on lexapro and risperidol since Sept 15th 2011. also added in Anafranil®, (clomipramine hydrochloride capsules USP), is an antiobsessional drug that belongs to the class (dibenzazepine) of pharmacologic agents known as tricyclic antidepressants. Tried previously Celexa. Thats useless. Do not know yet if they are helping or not. I'd say they are. At wrost her OCD is a 10 adn that was while on the celexa. On the lexapro and risperidol it maxs out at an 8. still bad, but not our of control bad.

Who wrote your ivig script and where did you have it done? I know Dr M and Dr T would only give a script. We saw Dr Smith in edison NJ and he will oversee the admin. At the NIH our dd 12 had a bad fever from it the 1st day. Dr Smith thinks she needs several ivig in a row. I have to wait till JAn 1st when I go on united health care, cause I believe they cover ivig for pandas.

Nih is all done. Dr. M is all done. We saw Dr Smith a few weeks ago in NJ. Smith, M and NIH all think we should haev another ivig done. we are having more testing done. The IVIG in May knocked out 80% of her OCD in June. But is July it all cam back and much worse. ABX we have tried are amoxacillan, augmentin, augmentin XR, zithromicin, and biaxin. the psych meds haev helped but only maybe lowered the OCD by 20%, she is not having panic attacks but still has lots of OCD.

DR M team gave us a treatment plan. But its up to us to find other docs to implement it. First up were supplements. done. Second is psychiatric meds. - we are trying 2 now. Third is wait to try 1 and 2, then do another ivig. We have seen scott smith on that and are soon to have a bunch of tests done to explore that path too.

Dr T told us strep can be in the cavity around your organs or go intra-cellular. He has an abx combo to blast it out, and not amoxaxillan. Throat cultures are only at best 50% accurate. Thats why the ASO and DNase tieirs are taken so often to look at the antibodies to strep. Actually you want to ee the change in those numbers, rising or falling, not so much the numbers themselves. Our daughter is stuck on her OCD and anxiety. We are trying psychatric meds and CBT now while waiting on more testing (yeast in stomach) and trying to figure out how to get the lyme bartonella test done. We did an ivig in may thru NIH and it helped alot, but only for 3 weeks. So we will have to decide if we want to try another too.

We have seen Dr L, Dr T, Dr Murphy, did the program with Dr Storch's office, and have seen Dr Swedo at NIH and Dr Smith in NJ. Plus local psychatrists and psycologists. We are still feeling our way now a year later as our dd12 relapsed after her only ivig. We were at Dr Storch's shortly after Dedee. To get the appt w/ Murpy, its a different one than w/ Storch's therapy team. You have to set it up first, then if you are goint to USF, go around that appointment. Dr M was good, but for us it was 2 visits and we are done with her. Dr T is very helpful. Dr Scott Smith in Edison NJ was good too. Anyway, despite all the PANDAS docs, the NIH recommended simultaneosuly going with psychiatry medications and CBT therapy and PANDAS docs. Turns out, its alot of testing and trials.

I just rea you rinital post. Our dd12 has had sudden onset OCD bad for a year. We were in the NIH PANDAS study. As she is still suffering a year later, I believe you should see the PANDAS dcts, but also scheudle to see a psychatrist AND a psycologist. A psychatist can give meds to reduce the anixiety. A Psycologist to use is one that does Cognative Behavioral Therapy. It can help make a dent in the OCD. Part of our problem was the pschyatrist and psycologist we started with were horrid. Now we are on to new ones this month and are making good steps in the right direction. The problem with all these docs - PANDAS/PSYCH/PSCOLOG is that it takes soooooo long to get NEW PATIENT appointments, and that some are good and others just cannot help you at all. No way to know till you visit with them. SO you really need to make 2 appts with each type, see the first and then decide if you shoudl see the other one anyway for comparison. We have seen 20 docts in the past year.

Not sure what tenex is. Pro-biodics are for in-between an anti-biodic , at least 3 hrs before or after an atibiodic.

Thats what the NIH did. Post-ivig, they kids are put on one of 3 or 4 different types of antibiodics. Our kid was put on amox.

By negative do you mean NO bands either IgG or IgM with an Igenex test came up showing exposure? All coinfections were negative too? Burnell, I am going to ask the same question as Momaine. Did you test via Igenex and NO bands were present? I'm sure you have heard that many other lyme tests show negative when in fact there are infections present. My dd 10 had similar debilitating OCD, many hours spent a day, (I cried daily, it was horrific) presumably from PANDAS last year this time, finally the root cause of her behaviors turned out to be lyme and coinfections that she had harbored for over 2 years, although we didn't see symptoms of PANDAS until last July 2010. Thankfully, she is now being treated aggressively for lyme and coinfections (bartonella, babesia) and is at 90%, certainly no noticeable OCD to those outside the family now, and improving daily. We have not had lyme tested by Igenex. What is it? How do you go about having these tests done?

Our dd12 was in the NIH study in March- June 2011. She did her compulsiosn 6 hrs a day. In May she had an IVIG 2.o dose of gammmunex over 2 days. Weeks post ivig 1-3 were terrible. Weeks 4-7 were great. Maybe a 90% reduction in her OCD compulsions. Maybe 30 min a day. Then week 8 it crept back. By 10 weeks she was worse than before having it done. Back to 6 hrs a day and now has panic attacks. We are considering an ivig again, but also waiting and giving lexipro and risperidol a try along with Cognative Behavioral Therapy. We just did 3 weeks of CBT in Dr Storch's OCD therapy at USF in St Petersburg FL where we also saw Dr Murphy. We have also seen Swedo, Grant, and Dr Triffeletti. I would like to expand on the original question of this post and ask: HAs anyone with multiple ivig had any lasting success?

Our new psychatrist has recommended Lexipro and Risperisdol to bring down the anxiety. The intensive CBT we did for 3 weeks helped too, but I thought, and now the new psycologist thinks that she needs meds to help get the anxiety under control We are still considering IVIg. would be 1-2 months out anyway. Are testing her for yeasts and may put her on an anti-fungal if they come back as such.

Hello all, my daughter had an IVIG in May thru the NIH study. She improved so much in June; her OCD went from 6 hours a day to 30 minutes a day. At night it went from 2-3 hours of compulsions to 10 minuets. By July the OCD cam back. She now spends 2 hours a night on compulsions and about 4 hours a day on compulsions. We have seen many Dcts who suggesteda 2nd and possibly a 3rd IVIG. We saw Dr. Murphy at Dr Storch’s USF program for OCD in August, and recently saw Dr. Smith and talked to Dr T. Our dd 12 has been on anti-biodics (augmentin, amoxacillan, zith, biaxin) for a year and celexa (SSRI drug) for a year now. I know IVIG are very expensive and torn between the hope and chances of multiple ivig leading to lasting miracle versus the alternate of a lifetime of psychiatric medications. Have any of you had success reducing OCD compulsions after multiple ivig’s? Have the gain made been kept long term? Has anyone tried Lexipro or Ativan (lorazepan) to battle the OCD?

Her labs are normal other than the platlets. We saw a psycologist today to begin CBT. We will be seeing a new psychatrist soon, looks like Celexa that she has been on for a year does not help w/ anxiety. Hope to get different SSRI such as Lexipro that does bring down anxiety. Also going to have her hormone levels checked out, did not know that out of wack hormones can cause mental issues too.

Dr Murphy ordered these for us last week thru Quest, we are waiting for results

Wow we are following you. We just got back for USF. Our DD12 had a bad episode tonight where she went out in the rain for a half hour in her socks to perform her touching compulsion. She touches the ground nearly every 2 seconds when its bad. She was so wet and cold and could not stop doing it. We had the Biaxin suggested by Dr T a few weeks ago but have not tried it yet. DR M made other suggestions to us, one of which is possibly a 2nd ivig, here are her others... 1. Vitamins: Omega 3, No 6 or 9, at 1,000 tp 3,000 mg. Vitamin D 2000-3000 IU and N-acetyl-cysteine 300-600 mg. day 2. Immune complex lab work. 3. Augmentin 875 mg 4. Clonidine 0.1 mg at nigth to help with falling asleep. Can go up yo 0.3 mg but u haev to take their blood pressure daily as its a low blood pressure med for adults. 5. May add Abilify 6. May increase her Celexa dose from 20 mg to 30. 7. Continue at home with CBT. We have an appt this week with new CBT psycologist. Hoping to get in soon w/ new psychatrist to start abilify. Also wating for blood results. Does you DD have low blood platlets? Ours does 85. Should be over 150.

How do you all get Doctors to do these lyme co-infection tests? Ours only ever want to do the western blot. We are waiting for Lyme EIA with Refl 166 and 16M but I know not what any of that means, She has tested low for Platlets 85, RBC , HGB, HCT, MVP and reticulate 0.45 We are waiting for new results from the Univ of South Florida.

My daughter became sick with OCD and PANDAS in Sept 2010. Her platlet count then was around 80. Normal is over 150. and seriously low is below 50. After an IVIG in May 2011 it went up to over 200. Now (9/1/2011) at USF and All Childrens Hospital, Dr, Murphy ran blood work and our DD12 platelet count is back down to 84 with low hemoglobin and low iron. She IS on a multi-vitamin and easts alot of red meat. She has started to bruise more easily. We were just down at the 3 week CBT therapy under Dr Eric Storch in St Petersburg Florida. We are home and awaiting blood work that they ordered. We may soon start her on abilify to add to the celexa. But a second IVIG remains another option. Does anyone have experience in a PANDAS child or OCD child having low platlet count? We saw a hematologist last fall, and they had no guess and just said thats how it is in some people.

Wow. I never read your story before. My daughter also had bad OCD and rough nights. What are you doing to get her to sleep?

My dd12 had ivig thru the NIH study this spring. what is HD-IVIG? She has been on augmentin to 2000mg and is now on amoxacillan. Since the ivig, it's been 3 months. Her blood tests for aso tieters and DNase b are fine now, but her OCD is raging. What are these B vitamin supplements with zinc as a sleep aid? where do u get them, and how much do you give and when during the day?

Our dd 12, takes 3-5 hours at night performing OCD rituals. Even though at night she takes Rehmeron and melatonin, up to 10 mg. Anyone have any advice on how to get a raging mind to settle down? Her OCD ritual list seems to keep growing. We are at an OCD- CBT clinic in Florida but at night she seems to just stay at a level 10/10 and not be able to settle down at all. She sometimes reaches out with both hands doing the rituals. She complains of seeing fingers. She has to wipe them away. At night its like these images have her surronded. She gets very angry and is often up till 2 am