nicklemama

I'm probably one of the big cautioners on SSRI's. Start w/ a very low dose and go very slowly. My negativity towards SSRI's is based on experience w/ my DS. He was given Celexa. At the first dose increase 6 wks later, he became suicidal. He was 6yrs old at that time. Now, that said, I know they help some kids on here and I would point out that my DS was not being treated for PANDAS at the time he was rx'd Celexa. He was in an extended exacerbation of PANDAS(in hindsight). I think SSRI's have their place for kids who've been and are currently being treated for PANDAS and need some relief from their OCD. The best word I can say is have a lot of caution when giving an SSRI to your child.

I'd see someone specifically for PANDAS. I would not wait. Things can get worse w/out treatment. I believe there are a couple of doctors in your area who are familiar w/ PANDAS. I'd start there before traveling a long way. There is a pinned thread that lists PANDAS treating doctors by state.

My DS had an Asperger's dx before PANDAS. An entire week before. He had sudden onset of symptoms. They did not start until he was 5y9m old. Antibiotics drastically reduced the Asperger's symptoms. IVIG has pretty much wiped it all out.

Was in a hurry to pick up DS so came back to add a few things. One thing to save money if you choose a high deductible plan is to open a Health Savings Account (HSA). The money you put in goes in before its taxed, so its saves you there. If you don't use all the money w/in the plan year, it rolls over to the next year. Like Nancy said, its a pain in the butt to upfront those med costs until you hit your deductible. The HSA will take some of the sting out of it. Dh works for a major US corp and they payroll deduct for the HSA. The downside is its funded as its taken out of your check. Dh's company puts $500 in the account, up front. I think as an incentive to choose the plan. They also offer the standard BCBS plan I mentioned above, one other even higher deductible plan and an HMO. We had the HMO before DS got sick. I bailed out as soon as I could after he was diagnosed w/ PANDAS. It paid nothing for consults and visits to the PANDAS dr's. I could only get 8 days of azith at a time. That was a pain in the butt. I'm really happy to be back to a BCBS policy. No more getting referrals. Now I'm able to have DS see any doctor. I will get back 60% of the costs if we go out of network. So far, none of DS's doctors are deemed out of network. Back in the old days, we had a great BCBS policy from Dh's employer. $250 ded/ $500 out of pocket and NO premiums. I'd love to have that now. Company did away w/ it about 10yrs ago.

Believe it or not, the high deductible plans are usually cheaper. We had a choice between $160 per month, $2400 ded/$5300 out of pocket max or $460 a month, $800 ded/$1200 out of pocket max. I did the math. The monthly premiums alone was more than my total yearly out of pocket is w/ the higher deductible IF I actually hit the OOP. We had IVIG last yr, so yes, we did hit it but we still saved $$. Our costs are based on a family policy, not per person. My advice is to get out your calculator and do the math on it.

I also concur w/ Coco. I would do it very differently if I could do it again. I would do similar to Coco... one vax at a time and only the one's I had as a child. My DS's PANDAS was triggered by FluMist. Currently, he is fully vaccinated(done before PANDAS) but he will not have another vax until he's an adult and can make his own decisions. States have their exemption guidelines about vax's. In my state, you can obtain a medical exemption or a religious/personal belief exemption. They are nothing more than forms to be filled out. One by your doctor and one by yourself.

Wow. I've never seen that paper before. I made a copy and will take it or mail it to every physician my son has seen.

Ok, I think I understand now. Looks to me like the dystonia causes torticollis. I don't believe having torticollis as an infant from birth trauma has anything to do w/ the above or that it leads to autoimmune illness. I'll have to do some googling.

DS has never had a rise in titers nor has he had a positive culture. Dr K told us he's treated over a hundred kids exactly like our DS. DS also has no known immune deficiencies that can be detected by blood testing. Dr T was very thorough and he's been tested twice. His mycoP and EBV titers are also negative. Dr K and Dr T both said its some undetectable(at present time) glitch in his immune system.

How is torticollis related to dystonia, an autoimmune disease? My DS had torticollis from a forceps delivery. Like Mayzoo said, its a neck muscle injury from birth trauma. He completely recovered from it.

No trust in Kurlan and Singer. What are they up to? Dr T and Dr K are using the term PANS.

PANDAS is known to be a remitting illness. It will remit on its own w/out treatment, only to have it coming roaring back, even worse. I saw this in my DS. We did not know at the time he had PANDAS. The remissions will get shorter and shorter and the exacerbations will get worse and last longer until they no longer remit.

Dean- Welcome and sorry you have to be here. You are so ahead of the game than most of us found ourselves. You seemed to have caught this early. It took more than a yr for my DS to get a proper diagnosis and treatment. The first thing I will say is its probably too soon to expect major changes in your daughter from the abx. It takes time. First, she has to clear the infection. You are lucky to have found a pediatrician so willing to work w/ you. I recommend your pediatrician call and have a consult w/ Dr Trifitti. As for the dosage, my DS weighed about 53lbs when first prescribed regular augmentin. He took 500mg twice a day. They are horse pills. You never know how the learning to swallow a pill will go. My DS had just turned 7 when he started the augmentin. I got water and M&M's, planning to teach him how to swallow. He looked at the pill and told me he didn't need practice. He picked it up and swallowed it w/ a little water. My wish is that it will go that easy for you. It may not. Some kids just have the knack for swallowing things and some don't.

He was on lamictal which was prescribed after his intermittent explosive disorder dx. He was diagnosed w/ Aspergers and bipolar II a week before he was dx'd w/ PANDAS. He had been having difficulty for a yr. He was never given any meds for them. The neuropsych recommended we add risperdal to the lamictal but we never got that far. He started abx for PANDAS and we started seeing improvements. In pretty short order, it became apparent he was neither Aspergers nor bipolar II(something I was already very skeptical of). His social skills, while improved, did not fully return until after IVIG. Currently, he's on prophylactic abx and vitamins/supplements.

My DS was given a dx of Aspergers at age 6.5yo and also a secondary diagnosis of Bipolar II from a well respected neuropsychologist. He also had hyperactivity, OCD, intermittent explosive disorder and sensory processing disorder dx's. He turned 8 today and w/ PANDAS treatment over the last year, he does not meet the criteria for any of those anymore. Your DS has been sick a very long time. He may indeed have bipolar, in addition to PANDAS and all the other things going on, but I'll tell you its very possible if you can get a handle on things, he may well not have true bipolar.

DS had a stomach virus back in March that did not set off any PANDAS symptoms. He's had two back to back colds that have caused him a flare over the past month. For what its worth, DS never even acts sick, let alone spikes a fever. Seems to me most kids are lethargic and want to lie around when they are sick. DS never skips a beat. He plays, eats, and goes on normally, as if he is not sick. Its the darndest thing.

My DS seems to fit Dr T's theory. DS has rarely been sick and rarely has a fever. When my DS was younger I used to feel so great about how he was so rarely sick. He went two yrs w/out a sick visit to the ped from ages 3-5. My friends, on the otherhand, had kids who were constantly sick, running noses, many trips to the doctor. My DS would be around them and not get sick........or so we thought.

Good luck Nancy!!!!! This is such a major milestone!!!! Its nice to know there are kids that can reach this point.

I am being treated for chronic myco P. My doctor started me out on Minocin 50mg, M-W-F. The pain and stiffness in my hands and other joints slowly disappeared. About 5-6 wks after the initial dose, he upped it to 100mg M-W-F. I am herxing. I have good days and bad. The bad days I am so fatigued I just want to lie down in bed and do nothing. I just had an appt today w/ my dr and he says this is a good sign and its working. He will add azith 1x week in a couple of months. He does not want my herxing to get any worse.

Not in MI, but I've heard they are in a few other states. We will be seeking a medical exemption for future vax's and if our ped is not willing, I'll make it a religious decision. Whatever it takes. I won't have to cross this bridge, though, for a couple more years.

Geez, I think I could tell them what the medical significance is for the 2.4% of the vax that enters the brain!!!!! Yes, it was reported. I reported it to VAERS. I wouldn't have known to report it to VAERS but a friend is a NICU nurse and she insisted I report it and bugged me for a few weeks until I did. I had no idea what I was dealing w/ back then.

I can only speak from my DS's experience. Flumist triggered his first major exacerbation in 2009. Dr T and Dr K both told me no more vaccines for DS. He'll not get another one until he's an adult and in charge of himself, then he can make his own decisions. Exacerbation occured two days after FluMist.

I found out I have high IgG through testing after our DS was diagnosed w/ PANDAS. I was diagnosed w/ rheumatoid arthritis 14yrs ago. Had pain and stiffness, mostly in my hands that remitted after starting on plaquenil. All these yrs, I took plaquenil and it kept the symptoms in check. This summer, I decided to see another dr about my RA after I could no longer take plaquenil. He thinks I have never had RA but my symptoms are due to chronic mycoplasma infection. I am taking minocycline long term to try and get rid of the mycoP. Myco P can cause all kinds of symptoms.

Mycoplasma can and does cause PANDAS symptoms. Strep is not the only infection to cause PANDAS. That's why there is a movement to change the name to PANS...pediatric acute onset neuropsychiatric syndrome. He probably needs to be treated w/ antibiotics that are effective on mycoplasma. The penicillins such as amoxicillan, augmentin, do not work on mycoplasma.

While we are talking about the MTHFR and Factor V Leiden, I'd just mention that when you have multiple pregnancy loss, these are usual tests given. I have been tested for them. I'm negative.