Burnell

was there 3 weeks last summer. same deal as you w/ Murphy. Ended up seeing her anyway. You see one of her med students and then see her abit at the end. See her or not you really need a pediatirc psychatrist at hom elong term that prescribe brain medications - lexipro etc. we rented a condo at treasure island. less than for a hotel. 20 min drive. Its alot of hard work for your kiddo. Not a fun vacation. Be prepared. They get pushed hard and are upset alot. Watchout for the 1st day's questions from Storch or whoever. Their questions put new ideas of odd behavior into our child that she began to do that night and still battles with. I am still bitter about that. See if they can ask you all the questions with the child OUT of the room.

went ok. our kid did it. there are other ways to check folate deficinecy. the are approximations, but i would not put her through it (there are risks from having it done) just to check a folate level. The NIH checked about 100 things when they did it.

The symptoms can get worse for 2 weeks following ivig. Then weeks 3-4 shoudl see improvement. The ivig antibodies only last 4 weeks. You may need a second ivig at week 4 and at week 8 so that you do not lose the progress made. We see Dr Smith in Edison NJ

We were there for 3 weeks last summer. The therapy basis down to forcing the obsessive behavior trigger to be seen and then resisted. So the child must resist doing the compulsions. The 1st day the Docs ask alot of questions. do you (talking to the child) do this, or that specific behavior, like toilet issues, eating issues etc. for an hour. Well several of the questions asked actually placed NEW compulsive ides and behaviors into our daughter's head. So we went to deal with issues A,B and C and left with B, C, and D. Had they never asked about the very detailed compulsive behaviors she was NOT doing, then our child would NOt have picked them up.

celexa never helped our daughter. Lexipro is much better. Our daughte ris on that plus risperidol. Generic drugs are not nearly as good at the brand name. I recently learned the FDA allows generic drugs to have the active drug dosed in a pill from 80% - 120% of the target dose. The non-active ingedients help with the time release. Our daughter is having a flare up right now. Do you see a pshchatrist? We saw one for a year (who prescribed the celexa) and never made much gain. After we swtiched psych docs, we tried several drugs and found a combo that really helped. Even after IVIG your child's baseline may not be what it once was. HAving a good psych doc already will help manage that new baseline for your child.

is he on antibiodics? if so, then he needs to be on a probiotic to relieve the upset stomach.

we were there 3 weeks in august 2011. not a seemless team. you need to be aware that dr. murphy is there 1 or 2 days a week and requires an advanced appointment, and a seperate appointment from dr. storch's ocd therapy clinic. with his 3 week cognative therapy, you see a doctor under him or even a doctoal student. again seeign murphy,s group is seperate appointments. we were lucky and got to see her while there for the 3 week program. its alot of work. you have 3 to 5"hours of resitstance practice each day. the child must practice resisting what is causing the ocd. they push hard and its not a vacation. the beach is 5 miles away and you do have some fun there. the tampa bay rays baseball team is right there too.

HAd done at LAB CORE. Then insurance paid. The Labs can be in network or out of network just like the doctors, You had best check with your insurance company.

Try Uping the dose of the Probiotic. Our Doc has our DD12 on 4 culturelle pills at a time.

Our DD just got braces a month ago, no problems. We are doing better since seeing you in St. Pete, florida. started New psychatirc meds in Sept 2011. They have lessened her OCD by 33-50%. We got IVIG approved in January 2012. Are doing with Dr Smith in Edison NJ. She just had second one done last week. Hope to see improvements from ivig; but not yet.

We are tyring IVIG again. it took 8 months to get it insured. meanwhle our DD 12, has been seeing a psychatrist. The 2 meds form him made a 50% lessening of her OCD and tics. However, that came with some weight gain and other side effects. But psychiatic care is ususally all covered and quicker to get for some relief. Take the time to see if you can get ivig insured. It costs over $12,000 per treatment.

Our DD 12 is one lexipro and risperidol. We have also tried Celera, depakote, and clonadine. Celexa is a horrible waste of time, it has side effects and does not work like they claim. Despite that your insurance co. will tell you its the same and a generic to lexipro, its not. they are different, Lexipro had more active ingredients and is safer. These meds have helped our DD to sleep at night. Before the PANDAS, I would kid her about breaking a world record for sleep, sometimes 12 hours. Once PANDAS hit she would be up doing rituals till 3 am, only sleeping 4 hours a night. The meds have made it so she gets sleepy at night and not frantic. She has gained weight on them. We will be doing an IVIG next week w/ DR Smith in New Jersey. We have seen Dr Swedo, Dr Murphy, and DR Trifeletti. They all have diagnosed our DD with PANDAS. Since being in the NIH study in May, we have seen the other doctors and then began the odyssey of trying to get insurance to cover the IVIG. We tried 3 weeks of OCD therapy in St Petersburg Florida. The 3 week therapy is the only thing that I thought did not help at all. She just has no control over the OCD and the therapy is all based on the idea that these kids can control their OCD.

From the Website of The Pediatrics Devlopmental Neuroscience Branch, Division of Intramural Research Programs is within the National Institute of Mental Health PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever. The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. Tourette sysmptoms and/or OCD can be present in the patient with PANDAS. These 12 girls should try to get in the NIH study on PANDAS, as the NIH is still recruiting NEW patients.

Unitedhealthcare lists ivig for PANDAS as an approved treatment and approved us coverage. Highmark Blue Shield does not and therefore denied us coverage.

We tried Depakote twice now. Had no negative side effects and not sure if we saw a change for the better either. Maybe slept a bit better. Took DD12 off it this week to see if we notice any changes bad or good. She is on so many supplements like methel-folate and other meds, it gets hard to evaluate which are helping. Was told the liver problem is 1/10,000 and is about the same as if you took Tylenol regularly.

We started seeing Scott in September 2011. Have any of you done more than the deitary changes such as no diary and being on methel-folate?

Our DD12 is doing so much better that we started lexapro and riperidol and now depakote thanks to our new psychatrist this october 2011. The florida OCD therapy (aug 2011) did not help our dd12 at all. The ivig (may 2011) did not help. The anti-biodics have not helped. (oct 2010 - now) And the psychatrists seem to be covered by insurance.

if thats for step DO NOT eat any yogurt. Yogurt contains a strep based bacteria. If its not for strep, you ok. also not enough probiotic in any yogurt for offestting an anti biodic, you want culturelle probiotic at the grocery store.

Bulldog - NIH will pay your travel expenses and give your child a stipend for food while you are there. The parents food is at your won cost. That said, the Children' s Inn , on the NIH campus where u stay free, has a church provide a free evening meal 6/7 nights a week. Sometimes there are free lunches for emplyoees and familes too. You can get by inexpensively in the NIH cafeteria. Children' s Inn has contiental breakfest too. There is a free library at NIH and another at the Inn for mags, DVDs, and books. This is a no brainer going to NIH. When you have doubts or worry, don't show them around your child. Stay positive. If things go well and you can leave, the national zoo is free a short red line metro ride away. The metro costs a few bucks for each person.

WE were in the Study 1. You will get an IVIG 100%. Just may have to wait an extra 6 weeks like we did after having a placebo the first time. 2. No trauma. Spinal tap is no big deal, I was worried it would be too. They numb the back and roll the kid on their side. The kid doesn't know what going on exactly, and they kick you out of the room. 3. Great Docs, if you have a chance, go for it. The tests and watchful eyes are reassuring, 4. They give you $ for food, lodging at the childrens inn. 5. I went for some of it, my wife went for all of it. Other than the ? the fist day and meeting the docs the first day, there is no reason to have both parents there. Really you both do not have to be there. 6. The NIH has free transit vans from BWi and IAD airports several times a day. Flying is easy, take an ipod - read a book - nap and you're there.

you need to read up on scarlet fever, Sydenham's chorea, for background on PANDAS. All 3 are strep caused. Tonsils seem to be involved too. These auutoimmune diseases are not prevalent in poorer nations. No one knows why yet.

Sydenham's chorea or chorea minor (historically referred to as Saint Vitus Dance ) is a disease characterized by rapid, uncoordinated jerking movements ... Not same as PANDAS with OCD and tourettes but in the same area where Strep anti-bodies are the suspect cause.

We are looking into IVIG insurance coverage with united healthcare (UHC), but It does not go effective until january 1st. I have Highmark Blue Sheild now. They only said they would cover the administration. I know the IVIG will cost $10,000 each. I have read that UHC covers IVIG for PANDAS. We are trying to get pre-approvals from Highmark and UHC now, but it goes slow. So anyone have any success stories of having IVIG covered with insurance?

If you have insurance go see a psychatrist. I was against psych meds at first too. But after 14 months, they are what has helped the most and insurance covers alot of it. You may want to see a few psych docs at the same time to compare their ideas. The first psych doc we saw was terrible. The next two were much better. The bad one set us back about 8 months. The psych meds can and do provide relief but it takes awhile of trial and trial and trial.

Some tips: #1 - always get your medical records or lab rests copied for your own file. Afterwards, getting records is very difficult, Legally a doctor's offcie does not have to copy them for you. The records are theirs and do not belong to you, even though they are records about you or your kids. #2 always have all leb work or any other medical testing copied to you. #3 - Dr T and all other PANDAS Dctrs are hard to get ahold of. They have alot of patients. Dr T works alone most days wth NO receptionist. So call early. The best appointment you can have with him is IN PERSON, at least the first one.