nicklemama

My son has normally expected titers to the TDaP and one other his allergist/immunologist tested.

DS has been on biaxin and augmentin for two years. Despite all the things you read, he has not rotated abx and he's pretty much a typical kid now. He has taken a good probiotic, Klaire Thera Detoxification Suppurt and saccromyces boulliardi for 3-4 years. He takes 600mg of Enhansa 2x day, for the last 2 years. He also takes 1000mg of Omega 3. He takes two forms of B12, P5P, Folate. He takes a low dose iron because his ferritin levels were very low. He takes Vit C, D, E. A multivitamin. Zinc. ALAMax CR, Diflucan for yeast, Interphase Plus. I didn't just buy these and try them. He sees an integrative doctor who did quite a bit of testing to come up with what he needs based on the results of the labs. Its really tempting to buy things and try them when you read about good results on these boards but I have steadfastly kept my foot on the prescribed peddle, so to speak and I can tell you my son is about as typically functioning as I think he's going to get. He was 5 when this all started(now 11) so we think what we have today is our son. We lead a very normal life, as I type this. It could all change in a second so we don't take it for granted and we are trying to savor the moment every day. He had strep this summer w/out a flare. As long as we avoid fluoride at the dentist, he has not had tics.

I'm not sure I can directly answer your question. We didn't know our son had lyme when we started PANDAS treatment. He was given biaxin, initially, and that helped tremendously. But he wasn't kept on it and he backslid and did not get better. He had IVIG and was again, tremendously better. Prophylactic dose abx just couldn't hold him and his improvement. Then he got mycoplasma pneumonia 19 months after IVIG and he really fell off the cliff. He had second IVIG and it did not help. We sought out a new doctor and she tested and found lyme coinfections. Double antibiotics have drastically improved him. Somewhere along the way, he was tested and found to have MTHFR mutations that are being treated. He takes supplements for MTHFR, inflammation and two abx for lyme/co. He's doing really well. No real OCD. At least not that would be considered to be noteable.

Lol, I hadn't even noticed it was different. I take it too!

I'm guessing I gave DS too much, in the beginning. He was a gas factory! He is 11 and takes 100 billion a day but he's also been on abx for the last 4 years. Hard to wrap my head around.

I would not assume the flare is from allergies. My son has diagnosed allergies. He takes claritin every day. Occasionally, he still gets allergy symptoms of red, itchy eyes. We use Patanol, a Rx allergy eye drop for them. He does not flare. He also takes abx every day, prophylactically. Yes, he needs to be on an allergy med because allergies can contribute. Since he's not on abx, he could have an infection you are not aware of, yet. Typically,symptoms can start before the presentation of illness.

There are a number of good brands. We use Klaire brand. Specifically, DS and I take Klaire a Thera Biotic Detoxification Support. It has 50 billion CFU's. No strep thermophilus. Must be kept refrigerated.

Those are sensory behaviors and he has some lack of social appropriateness and cues, a bit of impulsiveness and rigid thinking. I can think of a few things....ADHD, Aspergers or high functioning ASD, and I would screen him for infections for PANS.

The company is Neurobiologix. They have all kinds of supplements. I only use the two creams. There is a listing of the ingredients. I worried that I wouldn't know how much I was giving DS and that's true enough, I don't. But it works. I had to back down on the Neuroimmune stabilizer cream. His doc said to apply it twice a day, morning and bedtime. If we did it at bedtime, he was hyper. My son has been swallowing pills since age 6. He can swallow two huge Omega 3 fish oil pills at once, so swallowing them isn't an issue but reducing the sheer number of pills really helped him and his attitude towards taking the rest. He's 11 now. Its been a long time. I don't recall what the directions say but his doc told me to use the calming cream on his back and the neuroimmune stabilizer cream on his inner arm. The calming cream is brown and we call it the brown cream. The other is red due to the two forms of B12 in it.

I use his Calming Cream and his Neuro Immune Stabilizer cream on my DS. I use them for his MTHFR mutations and by using the cream, he has to take a smaller number of pills a day. I've been using these creams for nearly 2 yrs. now. I have not seen Dr. Stewart. DS's integrative doc recommended we use them as a substitute for some of his supplements. It seems to work. My DS is better than ever. Of course, he's better not just because of these creams but because of the approach we started taking with the integrative doc. I know a PANDAS mom who took her son to see Dr. Stewart in Texas but it didn't help and she couldn't travel 1500 miles to see him frequently.

He never had high titers to anything. We struggled to treat him. He had IVIG twice. When we tested and found lyme and two coinfections, 2.5 years after starting treatment, and treated those, he got a lot better. We use antibiotics to treat his lyme and co.

Here's my two cents. It does not go away on its own. Each time it comes back, it's worse(if you don't treat). If allowed to go on, untreated, it can become permanent. That's what Swedo said at ground rounds. If you have symptoms, it hasn't all gone away. It's taken me five years of treatment to get to near symptomless for my son. The most important part of treatment was discovering exactly what was causing continued behaviors and that was undiagnosed lyme.

My son has normal titers for those things you listed. He has Lyme disease. Having high coxsackie titers is a common finding in PANS, however. It's not just strep. I also see your mycoplasmas titers are high, another common PANS finding.

Unfortunately, it seems most of them have issues with office management. If you can get to Dr T, in person, he is a good option. There is also Dr. Bouboulis in Connecticut. His office staff seems to have their difficulties too. The new PANDAS clinic is open at Mass Gen. I don't know how quickly you can get in to MGH or Dr. Bouboulis. If this is an emergency, I believe Dr T will do his best to see you ASAP. Three are others in your region but I don't know how quickly you can see them.

Wow, those are some coxsackie levels! Glad you are getting answers. Someday, I predict many, if not most, psychiatric issues will be addressed through medicine, not psychiatry.

What a great find. Thank you!

Oh, no! I am so sorry. And you know you are going to be told how rare rheumatic fever is now. Please keep us updated.

The reactions to meds is herxing. Bart is notorious for the herx and the foot symptoms. Detoxing is very important when treating Lyme and coinfections. It helps the herxing.

In my experience, it takes months. My son had IVIG twice, 19 months apart.

I'll echo PR40. My son had terrible separation anxiety. It's a symptom. It started easing after we found treatment. He's never had CBT. He hasn't has separation anxiety in years now.

www.medmaps.org You can put your zip code in and find docs in your area. Ours treats for lyme. I'm really sorry for your ER experience. I had a similar one several years ago. I would also echo that clindamycin is a big gun. Perhaps your are seeing a big herx. Lyme and coinfections can be a culprit in raging. In fact, it seems to be the rule. Thats not scientific just my observations after 4 years on this board and a raging son.

You really need to get to the bottom of the infection. Lamictal helped our son but the one thing that stopped the raging anger was treating lyme and coinfections. IVIG tamped the raging down some too, but two IVIGs were not lasting. See a MAPS doctor, in addition to working on the PANS. MAPS docs used to be called DAN docs.

Neither my son nor I see a doctor for our lyme that takes insurance. Very few who are qualified to treat lyme take insurance. So the doctors you saw don't treat lab reports. Hmmm, they wouldn't treat for any infectious disease that turned up positive on a lab report or they won't treat lyme? Either way, they are not the doctors you want to be seeing.

I agree with SSS.

I've been at this for a long time now, 5 years. My opinion has changed a lot over the years. I can only say what I see is treating the lyme and co really helps stamp out the PANS behaviors. My son never had a strep infection prior to his first PANDAS exacerbation at age 5. None of the PANDAS treatments, including IVIG twice, could put a halt to all the flares. Treating for Lyme and co has. He gets flares from dental appointments, even though we give him clindamycin as an additional abx before and after. We don't see flares from things like colds and stomach viruses. We seem to have figures put that flouride treatments at the dentist cause tics and adventitious movements that take several months to resolve. For us, treating lyme, co and methylation defects have been the key. I don't know of this has answered your question directly but I see a lot of commonality between my answer and rowingmom's. I don't know if my sons is autoimmune, inflammatory or a combo of both. He did have a very positive Cunningham back in 2010.