nicklemama

You must now see Dr C before you are accepted for the PET scan. My DS was scheduled for the PET scan in April w/out seeing Dr C. Dr K had set it up. We got a call the day before cancelling it and telling us we must see Dr C first. The wait for the appt was more than I wanted, at that point, considering my DS went a year w/out a proper diagnosis and treatment. We opted to go ahead and go w/ IVIG w/ Dr K and not wait. Dr C lost his funding for the PET scans, at least at that time and started requiring an appt first for him to decide if he thought the child had PANDAS or not.

My DS7 was on fish oil (Coromega) years before his first PANDAS exacerbation. Dr K recommends fish oil w/ 500mg of EPA per day post IVIG. I switched DS to Nordic Naturals post IVIG in order to get the required amount of EPA in the minimum amount of capsules per day. The two things that brought an end to his tics were biaxin and IVIG. He lost the tics two months after starting treatment w/ biaxin. They came back on zith. They got worse right after IVIG and then they stopped about 3 or so weeks ago. He is 11 wks post IVIG. Not to discount your experience w/ fish oil in gummies but fish oil gummies have a very minimal amount of fish oil in them. In my DS's case, I not seen any connection to fish oil and tics. Thought I should edit to add that tics are not my DS's primary presentation. OCD and anxiety are.

I would try and get your DS to swallow pills. My DS, age 7 can swallow the large fish oil capsules. If he can't swallow pills have the pharmacist flavor the liquid. I know our pharmacy, Target, has quite a few flavors to choose from. My DS took the liquid flavored abx w/out a problem and did not complain about taste. We went to pill form because of the short shelf life of liquid.

My son has never had a diagnosed case of strep. He probably had strep when he had ear infections. He has never presented w/ a classic case of strep and his strep titers are normal. He has PANDAS. His PANDAS was set off after being given the Flumist in Oct 2009. He had a lot of regressive behaviors. So much so that a neuropsychologist told us he had Aspergers. He no longer has those symptoms after being treated for PANDAS. The rash on his bum sounds like perianal strep. I would recommend you pursue PANDAS and/or lyme.

Great news!!!!!!

If I could turn back the clock, my DS would have IVIG immediately. Unfortunatly, he went undiagnosed for a year. That's one year of all kinds of PANDAS behaviors and a very dysfunctional homelife because of it. If he had been treated early on, I feel that might have stopped PANDAS in its tracks. We finally found Dr T and DS was placed on abx for 6 months. He did much, much better. However, he never got completely back to his normal self and he endured flare ups. He had IVIG 10 wks ago. The changes in him are unbelievable. It had been so long since we had "seen" the boy our son is. This one IVIG may or may not due the trick, since DS was sick for so long. Cost is also a consideration. Our insurance covered the IVIG. Unfortunately, we have a high deductible/high out of pocket policy. It wasn't cheap, especially when you figure in the supplements, vitamins, abx scripts, the going to dr after dr, the trip to Chicago twice, one for the appt w/ Dr K and one for the IVIG. We have a follow up trip back to Chicago next month.

DS had horrible time on Celexa. Initial dose didn't seem to do anything. Two months later, a dose increase caused terrible activiation in him. He was weaned off and, interestingly, started on lamictal. He's been on lamictal for a little over a yr now. It did help him, but not enough. He is 10wks post IVIG. We see Dr K in early August and we are going to wean him off the lamictal.

My son has never had a documented case of strep and has normal titers to strep and mycoplasma. It took a year to get him diagnosed w/ PANDAS because of this. He is 9wks post IVIG and doing very well. I can't believe the changes in him. He was diagnosed because I saw The Boy Who Hops episode on the Discovery Health Channel about Sammy Maloney, did some internet research and called Dr T. Dr K reconfirmed the diagnosis and recommended IVIG. He was about as classic a presentation as you can get, just no strep titers.

Dr K does do a second IVIG, if needed. I do not know the spacing. I believe its on an as needed basis, as judged by Dr K.

My DS 7.5 yrs old is 9 wks post IVIG. We see a waxing and waning, although this far out, the tics are gone and he's got some minor ocd and anxiety (bad thoughts, ect..) left. He's beginning to see that the thoughts are PANDAS thoughts. He's doing really well, but he got worse before he got better. My DS had IVIG 1y7mo after PANDAS hit him. It took us a yr to get him diagnosed properly. I'd say you got the real deal. Headache and nausea are very common post IVIG. My son also received benadryl during IVIG. No motrin though. It was started when his head started hurting. He had headache and threw up several times about 24hr after the 2nd day of IVIG. Headache lasted a few days. Vomiting only the one day.

FluMist and Varicella vaccines are live attenuated viruses. I read that FluMist can shed for 21 days. I would assume the same for varicella. There is nothing you can do about your child being around kids w/ shedding live virus vaxes, unfortunately.

I believe they are two separate entities. We were told my DS had Asperger's at age 6.5. At the time, I didn't know he had PANDAS but I knew something was terribly wrong. He did fit the criteria except for the age 3 or under at first presentation. The neuropsych told me he must have had symptoms I did not recognize, when I told him my DS had not been like this except for the last year. PANDAS symptoms can look like Aspergers/Autism in many children and I believe there are children out there who have PANDAS but are improperly diagnosed on the spectrum. My DS does not display Asperger symptoms when he is not in PANDAS exacerbation.

I'd be testing him.

Yes, vaccines can trigger PANDAS. Official evidence? Not sure. I know quite a few PANDAS kids have either had flares w/ vax or it has triggered the PANDAS. My DS's PANDAS was triggered by the FluMist. Both Dr K and Dr T have said no more vaxes for my DS.

No thoughts but I'll share our experience. DS7 is neary 8wks post IVIG. He is currently on 250mg Augmentin sid. A little over 2 wks ago, he had two very loose teeth that he lost in a span of 3 days. We could see him ramping up w/ symptoms. I gave him 500mg Augmentin bid for 6 days and he got better again. Dr K did his IVIG and we also consult w/ Dr T. You may have to go back to treatment dose for a longer period or maybe even permanently.

IVIG May 5,6 2011. 250mg augmentin sid for at least a yr.

My DS is 7 wks post IVIG w/ Dr K. His tics were never his main presentation. He had PANDAS for 1 yr before he was diagnosed and treated. He developed tics right at the one yr mark of him getting sick w/ PANDAS, just before diagnosis. He had eye blinking tics and a throat clearing tic that also involved him raising his arm to cover his mouth. Those went away two months after we started abx. The eye blinking tic came back about a month before IVIG. A few weeks after IVIG, he developed a should shrugging tic and the eye blinking tic went away. The shoulder shrugging got really noticeable. He's had it for about a month now but in the last week or so, its been slowing down. He doesn't do it nearly as frequently and its much less noticeable. I don't think there is a 'script' of healing. Each child is different. Some things are much better now. The tics got worse and now they are getting better again.

I read it and I kept thinking about all the PANDAS kids who are misdiagnosed bipolar.

Dr Chugani is doing PET scans on kids suspected of PANDAS. Its a long wait for an appt but I think its worth it to make an appt and see how it goes. He's a neurologist at Childrens. My son has not seen him. After 1.5yrs w/ PANDAS, 1yr undiagnosed, I chose not to wait for the appt and my DS had IVIG in Chigago w/ Dr K.

We have a small PANDAS message board for Michigan. I'll pm you w/ the info. Unfortunately, there are not a lot of PANDAS knowledgable docs in MI.

My DS is 7.5yrs, weighs 55lbs, had PANDAS majorly impacting him for 1 yr before diagnosis and treatment and takes 50mg 2x day of lamictal. I'll offer this though. It did a decent job, most especially of taking the edge off raging and turned it more into anger but not attacking us. It does not do much for his anxiety and ocd. My DS presents w/ age regression, social issues, etc... so much so that a neuropsychologist gave him a dx of Aspergers last fall before the PANDAS diagnosis. However, we knew our son has not always had these issues. Abx improved the social issues and regression somewhat but after 6 months, he was at a plateau of not further improving. My DS is 6wks post IVIG and we are amazed at the improvement in his social skills and age appropriate behaviors now. He still has anxiety, ocd and is ticcing. We see some small improvements in them that wax and wane. I know we are early in the IVIG game but if you can at all consider IVIG, I would highly recommend it.

DS is 5wks post IVIG. Nothing major in improvement. Lost one tic, gained another. Social skills are better. That's about all.

Interesting. My DS is 5wks post IVIG. He lost his eye tic about 2 wks ago, only to get a bad shoulder shrugging tic a week later. We are hoping it, too, goes away.

Dr Chugani had some funds for PANDAS PET scans. Some of his funding ran out but I think he is still able to offer them to some of the patients. Its worth looking into. If the PET scan is positive, Dr Chugani is ordering IVIG.

Dr Harry Chugani at Children's in Detroit. Be prepared for a long wait to see him. Dr Chugani is doing PET scans on kids w/ suspected PANDAS. When I suspected PANDAS in my DS, I didn't know Dr Chugani was seeing PANDAS patients. I decided to do phone consults w/ Dr Trifiletti in NJ. After 6 months, we decided to go the IVIG route and went to Dr Kovasevic in Chicago. Your choices for PANDAS docs in Michigan are very limited. We have a Michigan PANDAS support group on Yahoo. I'll pm you with the information. Cindy