nicklemama

This is the great question. My DS has allergies and his allergist wants him to start allergy shots but I have said no, at this time. I do not want things stirred up. If only I had a crystal ball.....

Pm'd you.

Keep both.

You need to find a good neurologist. Sorry to say but get out of Arkansas. Most of us here have to travel. I would d get on Dr Latimers schedule. It takes many months. You could get in to see Dr Trifilletti pretty quickly. I would not do a phone consult with the description you've just given. I would also look into NMDAR receptor encephalitis just to make sure that is ruled out. These are not psychotic episodes. Don't let anyone convincenyounotherwise. They don't know what it is so they figure its mental.

You will need to travel to get medical help. That is the unfortunate scenario of most of us. My DS was dx'd with bipolar before we found out about PANS. He was never treated for it because we found the PANS within a few weeks of his bipolar diagnosis. He's done we'll with treatment for PANS.

Thanks everyone. I will get tested. It's a matter of time. Like most moms here, my priority is my son. He goes back on Fri for round two of blood draws. His doc here has listened to all Dr T's radio programs and has spoken to him on the phone, so she is now running all dr T's tests and that is a lot of blood, so it's done in two draws. If either of us turn up positive, we will go to an llmd and have local doc for help. I think I'm the more likely one. I grew up in OK and while that is not a known hot bed of Lyme, I've pulled many, many ticks off over the course of my life. I should add, DS was adopted, so if he has congenital Lyme, it did not come from me. He was born in St Petersburg, Russia in a very urban setting.

Thanks for the info. I have read Cure Unknown. It's hard for me to think he has Lyme. He's never had a known tick bite and we do not live in a Lyme endemic area. But our state is an emerging area. Actually, if anyone has Lyme in our house, it would be me. I'm getting tested after I get back DS results. I have RA but after 15 yrs, still have no joint damage. I have always been seronegative for RA. Changed doc yr ago. He's not convinced I have RA. I am currently on the minocycline protocol for RA. New doc discovered I have fibromyalgia. I am exhausted all the time. I thought it was from caring for PANS DS. I'm starting to believe that's not the case. I'm just trying to figure out why the ELISA would be considered positive. Blood was drawn yesterday on DS by Quest. Have to start there. Still recovering from paying for IVIG #2.

I'm here from the PANDAS boards. I took DS to see a new doc yesterday to help us w/ local treatment. We've had two IVIG's w/ Dr K with good results, just not lasting results. To get to the point, almost 2.5yrs ago, when he was finally diagnosed, he had a ton of labs ran by Dr T. A W Blot was ordered but here in MI, an ELISA must be ran first and then IF its positive, the W Blot is ran. DS's ELISA came back 0.41. The range for negative is listed as 0 to less than 1.00, equivocal is 1.00-1.20. 1.20+ is positive. So, the test says negative. The new doctor told me this is not a negative ELISA and that the 0.41 is reacting to something and that a truly negative ELISA would be 0. She is not an LLMD. She's helping me locally w/ PANDAS. She has been following Dr T and ordering his tests recently. I guess my question is.....Is she right? Is this really not a negative ELISA? She's ordered a W Blot and all the coinfections from Quest to start since my insurance covers it. I will pony up for Igenex if anything comes back suspicious. What do you all think? DS has never tested positive for strep or mycoplasma. We are running a ton of virus titers and new mycoP and strep titers to try and get to the bottom of things. We are running so many tests, we have had to divide them up into two since my son is 9 and 65lbs. First blood draw was this morning. I have wait at least a week for the second. I'd appreciate any and all input.

I'm glad you are keeping the Dr K appt. DS has never been nonfunctional. He's very dysfunctional, though and that is not acceptable to me. We are two months post IVIG #2 with DrK. We cannot live with the anger, aggression, rigid thinking, compulsions to play video games or whatever else is the compulsion du jour. They cause problems in our household. The separation anxiety, social issues. We don't function as a normal family and I'm not accepting of that. Going to school and school work has not been a problem. He probably appears to others as quirky and /or spoiled in public. I don't think just because a child isn't completely nonfunctional, additional treatment should not be considered. I will fight this to my last breath.

Yes. DS had neuropsych testing almost one year from onset of PANS, before dx, no treatment. It was all day on one day. In hindsight, don't know how he did it. He had strong cognitive strengths. The disorganized thinking, anxiety, etc.....all came out in testing. When I read the lengthy report now, it has PANS written all over. It was not beneficial for school use. No cognitive deficits. While much more detailed, it mirrored the results of psychological testing we had done two months after onset. We were doing this while trying to figure out what was wrong with DS. It also got him dx'd aspergers and bipolar, which resolved after treatment.

I grew up in small town Oklahoma. That might seem like third world to some, lol. Had pets. Drank raw milk. Lived in an old house. No a/c, windows open all summer. We didn't do all the hand washing done today. My mom worked and she was not June Cleaver with the house cleaning. I have an autoimmune disorder.

Wish I could give you better news but it may be a long time before the flares stop. We are three years and two ivigs into this and still we get flares. There may be some kids who stop having flares soon after treatment but I'd guess they are in the minority and may be kids who had treatment fairly quickly after initial onset. DS is not in that category.

If you are looking for the magic bullet, this isn't it. DS has been on Xymogen ALAmax CR for nearly a yr now. 600 mg. I get it from his biomed doc. He still had another PANS exacerbation after pneumonia and required a second IVIG 8 months after starting biomed treatment, and we are still struggling 2 months after IVIG.

LLMIS- I think your post above just talked me into the 23 and me.

I may have to go see this by myself. Can't leave DS with a babysitter right now. Doesn't matter, we don't have any babysitters anyway.

That was interesting. I think my DS is a Warrior. When he is in full PANDAS, he is a risk taker. Competition never bothers him. I wonder how this all fits in with irrational thoughts and fears of the everyday variety when in exacerbation?

My DS had the bcg vax when he was just a few days old. He was born in Russia and we adopted him at 6 months of age. It hasn't stopped PANS. One more thing. It's not terribly effective on TB. I think that's why it is not a standard vax in the US. My friend from Britain has also had this vax.

DS was given a 5 day pred burst by Dr K for tics and adventitious movements that started last summer. It took more than a month to see them go away but they did.

That does sound like a high dose.DS takes 2mg a day for compound heterozygous MTHFR. Did you have other labs done besides the mutation. Our biomed doc ran a couple of panels to see the levels of things before he gave us the protocol.

The better in the morning/worse at nite is common. My DS is the same during a flare. He's never been as bad as pre diagnosis but it wasn't easy either. We treat flares with treatment dose abx and motrin. This usually calms things down.

I would dose with ibuprofen. I say this because that is what I did. DS is two months post IVIG 2. It helped a little. It has taken 6 weeks to see good improvement.

I am a believer. I have a vaccine damaged son. Flumist did him in. I reported his reaction (pandas symptoms before I knew about pandas) to VAERS. If my pediatrician had done her due diligence, I might have had a case. Cant prove when you have no verifiable medical evidence like MRI, etc.....

I echo Mary. Each plan within an insurance company may be different. We have had two paid for thru bcbs. My dh's employer uses bcbs to administer the program. The company self insures and sets its own rules within the policy. We had IVIG with Dr K both times.

We just did #2 w/ Dr K two months ago. Both times we have seen an increase in symptoms that are not easy to live with in the first place, as in raging. Both times we have seen a slow improvement. We went 19 months between the two. Needed number two after a bout of pneumonia in early Nov.

My son was originally diagnosed with spd. He was a sensory seeker. We found out this was a part of his PANS. My best advice is not to pin much hope on local help. If there is someone in the Denver area to help you that will be a bonus. I recommend seeing a PANS specialist.