nicklemama

Hate to be an echo, but you are going to have to find a PANDAS doctor. If I had waited for my DS to have a positive rapid test, I'd still be waiting and I can't even imagine how much worse he'd be than he was nearly 2yrs ago when all this started. He was horribly bad then.

BCBS covered IVIG for my DS in May. Preapproval was not required. I had no idea if they would cover it or not. They did! The code used was for post infectious encephalitis.

Jag10- I really hope its not the molluscum again. Just wanted to let you know my friend's son had terrible molluscum. After a yr, w/ no end in sight, her ped sent her to a dermatologist who put a blistering agent on some of them. There were so many, on the trunk of his body that the derm would only do so many at once. My friend read about Zymaderm and started using it. It got rid of all the molluscum. Its been a year or so and no return of molluscum.

My DS developed tics one year after his first major PANDAS episode. He had eye blinking tics and throat clearing. Right now, he has a shoulder shrugging tic.

On a good day for me (or dh) we remain calm and try to be sympathetic (learned techniques from DS's therapist) and understanding. Metting out consequences only escalated into rage and quickly. Traditional parenting does not work on our DS when he is in PANDAS mode. Time outs in his room caused major panic and raging. We pretty much gave up consequences in favor of talking to him calmly when he had calmed down or was in a place where we could talk about it. Our DS was never one to do "naughty" things on purpose, before PANDAS. We know that boy is still w/ us and we try our best to keep that in mind. It is not always easy. Two books that really helped us was The Explosive Child by Ross Greene and Beyond Consequences, Logic and Control by Heather Forbes. My son was the poster boy for the Explosive Child before we started abx. Now we are 1 month post IVIG and the anger and raging is just gone (knock on wood).

Page one after clicking on articles contains an article about antigangliosides and autism. The higher the M1 antiganglioside, the worse the autism is. It actually says with these findings, autism ought to be researched to see if its actually part of autoimmune neuropsychiatric disorders!

Right there with you. If that's not enough, I received a letter on Sat saying our family had been removed from the "Healthy Living" (that we had to qualify for and which is lower in deductible and out of pocket) because we failed to meet all the qualifications. Of course, no one answered the phone on Sat and I had to wait until Mon. Dh called because I was fed up. Turns out, they accidentally sent everyone the letter instead of those that didn't meet the qualifications (physical w/ PCP, no smoking, high bp, high cholesterol, high blood sugar, obesity, etc....). The rep made changes in the system. Now they have to reprocess every claim after April 1st. We've not only met our deductible this year, but out of pocket thanks to IVIG. Its a mess and if PANDAS isn't enough to send you over the edge, the health care issues will.

Welcome. Sorry you have to be here. My DS, now 7, went one year w/out diagnosis. One very hard year for all of us. We went from dr to dr. Everyone had a diagnosis, but nothing worked nor fit. I actually discovered DS had PANDAS by watching Mystery Diagnosis on the Discovery Health Channel. I started by doing a phone consult w/ Dr T. He ordered a large battery of blood tests. Very thorough. Everything but ferritin levels came back normal. DS was started on antibiotics. We saw dramatic improvement on abx. Six months later, w/ no underlying infections ever found and DS hitting a plateau, we went to see Dr K. My DS had IVIG 4 weeks ago. We are starting to see a lot of encouraging improvements.

I also watched Dr C's. It gave me answers about my DS's high tubulin and D1.

DS recovered about 85% after first episode w/out any treatment (because no one knew what was wrong w/ him). He went about two months doing pretty well and then another episode. He never got over the 2nd episode w/out treatment. 7 months later, after 2nd episode, he was diagnosed and put on long term abx. Six months of abx later, he had done better but was not getting back to his normal. He was maybe 70% better. At that point, we did IVIG. 3 wks post IVIG, he is doing so well we are amazed. He's better than he's been in 2 years.

Tics are not required for a PANDAS diagnosis. Not all PANDAS kids have tics.

Dr K told us he was supporting a name change to PANS when we saw him 3 wks ago. We believe my DS was originally infected w/ strep as an ear infection but we have no documentation of strep because he didn't present as strep, so not tested. His major exacerbation that caught our attention and led us down this path was after a FluMist vax. I guess officially, he is PITANDS, although Dr K used the PANDAS term.

I am so sorry this is happening. I don't know what to tell you but to hold on. Believe me, I know how hard it is. My DS was the same. The rages, attacking me. Having to hold him down. Hearing him yelling at me that I was killing him. The remorse when it was all over. His depression over being so out of control and hurting me. I pray I never have to relive those days. Would it help to call your doctor and ask them to try and intercede w/ the insurance co again? Call the insurance company yourself and bug them. Hold on and hang in there. I've been there and it is NOT easy. I am so sorry.

DS was diagnosed Aspergers, age 6y9m, about a week before I called Dr T. I just couldn't wrap my head around the fact that he was Aspergers since he hadn't always had those symptoms and it all started after the FluMist. Aspergerish behavior went away w/ abx.

Your DD sounds like my DS before we started lamictal. The raging, meltdowns, indecision (not to mention the ocd's, etc...) were so very hard on our family. We saw a difference in a weeks time, even on a very low dose. However, if I were close to IVIG, I'd try to hang in there. I know how difficult it is to have a raging child and I know its not easy to wait. My DS had IVIG nearly 3wks ago now. If you give the lamictal, you'll not know how either are really working for her. We are actually planning to wean my DS off lamictal when he's 3 months post IVIG.

I went super slow w/ the lamictal and took about two months to get to 100mg a day, divided into two doses. We went up until the raging stopped. My DS is 7.5, 55lbs now. He was 6.5 and a few pounds lighter nearly a yr ago. The Stevens-Johnson thing scared me a lot. My DS gets really red eyes as a product of his allergies(takes rx eyedrops for it) and it took me a while to relax when I saw his red eyes and not panic that it was Stevens-Johnson syndrome. He also gets eczema. My best friend has been on lamictal for more than 10yrs now for her seizure disorder, w/out any problems. That made me a feel a little better.

Wow, this is great info. The psychiatrist put DS7 on lamictal nearly a yr ago as something to help w/ his anxiety. He was having rages and our lives were just awful. We saw an improvement w/in a week. He has been on 50mg twice a day since July of last year. I don't know how much it helped his ocd. It did knock down the raging so that he only got really angry instead. He was able to direct his anger to a beanbag chair. His therapist worked w/ him for many, many months to try and get him to direct his anger at the beanbag chair rather than us! He still has ocd. Its not terrible or incapacitating. Hmmmm. He started lamictal 9 months after his first PANDAS episode(that we did not know about at the time). I'm going to have to look at my journal of his behaviors. Yes, its my ocd, lol. We still have DS7 on lamictal but I have been planning to wean him off when he reaches 3 months post IVIG.

I loved all the time spent w/ Dr K. Everyone asked him tons of questions. He sat around w/ us in the little infusion area of the surgical center. None of us were coffee drinkers so no one went to Starbucks w/ Dr K. He has a way of winding my DS up. He kept tellling me to relax he'd seen it all. It was hard for me because my DS can get totally out of hand and we work hard to keep it sort of reigned in. I know Dr K just wanted to see his behaviors but I'd seen enough of them over the last yr and a half to fear them, LOL.

We missed you by a week! DS7 had IVIG two weeks ago on Thurs and Fri. We drove back home on Fri afternoon. Two other kids, a boy 11 and a girl 8 were also getting IVIG. We love Dr K. He IS a character. My DS also got sick, as did the other two kids. DS wasn't sick enough to call Dr K. He had a headache that was helped by Tylenol and he threw up twice on Sat. He spent the day watching tv and lying around. Headache on Sun and Mon. Woke up Tues morning and announced no headache. We are seeing small signs of improvement and a few baby steps back. Overall, he's doing well.

We were told my DS had Asperger's at age 6y9m. He is currently 7y4m. I tried to tell the neuropsych that he hadn't always been like that. He only became that way after the FluMist a year earlier. He told me my DS always had those behaviors, I just didn't notice them! LOL. I'll admit, he had a lot of aspergerish/autistic behaviors at that time. Two weeks later, he was diagnosed w/ PANDAS, put on antibiotics and the aspergerish behaviors, most especially the loss of social skills, went away. Today, nobody would say he had Aspergers. My personal opinion is there are a lot of misdiagnosed autistic and Asperger's kids out there that actually have PANDAS. I believe a big factor is my DS's misdiagnosis has to do w/ the fact that he has never had a documented case of strep and his titers are normal.

I live 5 hrs from Chicago too, only the other way from you in MI! We see Dr K. Get on the phone, make the appt and get her there.

Your son's onset sounds similar to my son's. He's 7 now, 5.5 at onset. At least one dr thought he was bipolar, one thought he had sudden onset of Aspergers (lol), he was diagnosed w/ SPD-sensory seeker and he had ocd. I don't know much about doxy. I wanted to let you know that you do NOT have to have a documented case of strep nor do you have to have high titers for a PANDAS dx. My son has neither. He's been treated for PANDAS for 6 months now and doing pretty well. Rages are gone, ocd is not so intense. He had IVIG two weeks ago.

Two months in total. He's been on abx since Oct 2010. He was first on biaxin, then the azith. He had IVIG near 2 weeks and his Dr prefers augmentin, so he was switched after the IVIG.

I believe your son has PANDAS. Its not the amoxi. That's what we were told when my son became angry, irritible and tantrumed while on amoxi for an ear infection at age 3. We took him off amoxi and the episode lasted about a week. We had no idea what was in store for us in the future. Two of the best websites are Dr K's www.webpediatrics.com and www.pandasnetwork.org. Print them out and take them to your ped. One thing that really helped me understand the ocd aspect of PANDAS was reading Tamar Chansky's Freeing Your Child From Obsessive Compulsive Disorder. I really didn't understand what ocd looked like in a child until I read that book. Your son's raging/tantruming is coming from not being able to 'complete' his obsessions or compulsions. The sheets and who puts his jammies on sounds like a 'just right' ocd. They don't make sense to you but they do to him. Oh, and my son is currently on augmentin, a form of amoxicillin, and he has no side effects from it.

My 55lb 7yo took 250mg once a day.