nicklemama

Karen- I don't know if allergies can cause PANS or not. My DS certainly has them and we treat them w/ daily claritin recommended by an allergist. Many infections can cause PANS, not just strep. My DS has never tested positive for anything. He was first diagnosed by Dr T. We now see Dr K in Chicago because he is closer. Antibiotics gave my son a major turnaround. Dr T was brave enough to prescribe them w/out any evidence of infection. I can say that my son's PANS started two days after a FluMist vaccination. That is the direct link we have to his PANS. He was 5.5 yrs old at that time. It took us a yr to figure out the PANS. In that time, we were told DS had a lot of different things....sensory processing disorder, mild transient tic disorder, anxiety, oppositional/defiant disorder, aspergers and bipolar II. Everyone had a different opinion. The only opinion and treatment that has helped him was his diagnosis and treatment for PANS. He just turned 9. Its been a long road, w/ remission/recovery and then pneumonia triggering another exacerbation and having a second round of IVIG. I'd follow Dr T's lead. Keep your appointment to see Dr B and get different look at it. Many of us see more than one PANS expert. They each have their strengths and weaknesses.

Congrats on winning the battle. Good news to hear.

Welcome back! Maybe you can share some of what is helping.

We saw a slow gradual improvement after IVIG#1. While this turning back of pages is new, the behaviors are not. He was this bad or worse during his first exacerbation.

DS is 18 days post IVIG #2. The pages are nearly torn off. He is raging, severe ocd which causes much of the raging when he can't complete a compulsion like buying a black ops app for his ipod. He has quit riding the bus to school. He's depressed. We've had to up his melatonin to help get him to sleep. He's saying things like he's stupid, he stinks (literally). Its been VERY tough this time around. We did not see such severe turning back after #1 but he was not in exacerbation during #1 like he was for #2.

I echo DCMom....you wouldn't need IVIG or PEX if they were symptoms free. The first IVIG DS had, he was doing pretty well and symptoms weren't terrible. He was past exacerbation and just not getting close enough back to 100%, so he had IVIG. Second time around, he was in an exacerbation (and still is). The difference between the two are after the first one, he had a slow and steady improvement w/ a few setbacks along the way. This time around, he got dramatically worse about 3 days post IVIG and we are just now seeing small improvements and have gone 3 days w/out raging.

I'm wondering the same. I've been in despair since DS is in major exacerbation #3 and we are two weeks post IVIG #2. Its been 3 yrs since this started and DS turns 9 in a week. Is this to be his life? He tells me he hates his life.

DCMom- This sounds like a really good plan. We used to consult w/ Dr T but I haven't since DS had IVIG in Chicago w/ Dr K in May 2011. I am going to see a doctor locally in Jan. She's more of an integrative doc but she's been working w/ a few PANDAS kids. She has an autistic son and is/was a pediatrician before moving into integrative medicine. I am going to try and pursue this plan w/ her. I think it would be a good fit for DS.

How do you get a doctor to prescribe a steroid burst after each flare? Are you seeing a PANDAS specialist. The one we see would not do this, not soon enough, at any rate. My ped is being kicked to the side, as she is no help, whatsoever. We've been at this 3 yrs. Just finished IVIG #2 and things are not good. My son is rarely sick. Flares w/ exposure. If he gets sick, which is what just happened to him, its downhill when the illness is over. He had pneumonia 5 wks ago or so. He hadn't been sick for nearly a yr. Boom, just like that, all gains erased.

Deedee- I'm a big believer in going w/ your gut. I did want to tell you that in the approx 1.5yrs DS was on lamictal, I never saw a correlation between tics and lamictal. When he ticced, he had an infection. When it was treated, they slowly went away.

DS is compound heterozygous. He is on methyl B12 injections, P5P (a form of B6), methylfolate, alpha lipoic acid, plus some other supplements based on deficiencies we've found through testing.

Lamictal is an anti seizure medication. Its used for its antidepressant/anti anxiety effects in bipolar disorder. My son was on it for 1.5 yrs. It takes time to work up to a therapeutic dose. I've read here is can cause tics, especially if you get the dose too high. My DS did develop tics while on lamictal. At the time he was rx'd lamictal, we did not know he had PANDAS. The tics went away when he was put on biaxin when first diagnosed w/ PANDAS. Tics are not his major presentation. OCD and raging are. His tics come and go and are related to infections. We took him off lamictal after IVIG #1 because he no longer needed it. He was doing so well. Unfortunately, he came down w/ pneumonia 6wks ago or so and has since had IVIG #2. He's not doing well right now and I kind of wish we'd just left him on the lamictal. He could use it right now.

Benadryl was given pre IVIG infusion on both days. Solumedrol was injected into the IV port as the last of the saline bag was going into DS on the last day, after the Ig bag was empty. We did not give additional benadryl for either IVIG's. We did give motrin post IVIG for headache.

They don't type blood for IVIG. The globulins are filtered out of the serum so there is no cross matching worries. We've never been asked for ds's blood type, which we don't know anyway.

It will last a couple of days.

My DS is 8 days post IVIG #2. His anxiety has increased. He's having tantrums in the evenings. He's sitting upside down in chairs. He's having nightmares. We've been down this road before and its par for the course. Dr K calls it turning back the pages. I can't help you w/ meds. DS has been on abx for two years and we haven't had problems w/ abx (knock on wood).

In my experience, tantrums/raging = OCD interrupted or unable to complete. I did not think my DS had OCD either. It wasn't classic handwashing or checking or other similar things we all know are ocd. When I read the book Freeing Your Child From Obssesive Compulsive Disorder by Tamar Chansky, I recognized all kinds of ocd in my son.

The short answer to your question is yes. This has happened to me twice where the lab did not run all the requested tests. One time, they did not do the ASO and antiDNAse B which is the main two I went to have checked. Two different labs, too.

Our biomed dr has DS on a multivitamin from Kirkman. Its a capsule. The dosage for DS is two a day. It could be opened and put into something like applesauce or pudding. I don't know if Kirkman's makes chewables but these vitamins are marketed for kids on the autism spectrum. DS has MTHFR mutations. He also takes methylfolate. The folate in the Kirkmans is called folinic acid. Its worth looking into.

I agree w/ the others, this is an issue to address quickly. Let me give you a comparison. My DS is not quite 9. He's 53" and he weighs 65lbs. He's lean and thin. He's had issues w/ restrictive eating in the past. He's been eating well for the past year and gained 8lbs. At 70lbs and 60", your son is very thin and has very little margin to lose more weight.

Skip the skin TB testing. You are likely to get a positive result since she most likely had the BCG vax shortly after birth. If you are concerned about TB, have a chest xray done. Ask for augmentin or azithromycin. Draw titers for mycoplasma. You'll want IgG and IgM. Have western blot done for lyme, for starters. If your ped will help you, you are ahead of the game. You can see a neurologist but don't expect a lot from them, that way, if they help you, you'll be pleasantly surprised and if they don't, you won't be disappointed. I've gotten absolutely no help locally. That is typical of many, if not most of us here on this board. My DS was adopted from Russia too. This disease has absolutely nothing to do w/ it and don't let any doctor drag you down that path. It will keep you from getting proper treatment. I can't imagine, at her age, this has anything to do w/ her adoptive status. Ten days of antibiotics really does very little to head this disease off. She is likely going to need it on a long term basis. We are now over two years of daily abx and see years ahead, as well. My DS will be 9 this month.

I have not seen dramatic results. DS is taking methyl B12 injections 3x weekly. His social skills are much better. We started the B12 injections back in Mar. He caught pneumonia about a month ago and the PANDAS really kicked in. We just got back from Chicago and IVIG # 2 last nite. DS has MTHFR mutations. He is/was low in B12, B6, folic acid, among other things.

We are leaving the practice. Yes, he was rx'd just the one zpack at urgent care. I took him in for follow up and she would not draw for strep/mycoP titers and no more abx. I happened to have two weeks worth of azith and gave that to him. Otherwise, who knows if he would have gotten over it. He has. He is left w/ PANDAS exacerbation and a trip to Chicago for another IVIG. I have to find a doc who will help us. Its not easy here in MI. We basically have no one.

Well said and I agree.

I agree w/LLM. DS takes 100 billion daily. He tics sometimes w/ flairs, sometimes not. In between, he does not tic.