mom md

Very interesting...please keep us posted.

The hospital is ready they are just waiting for the order to be faxed from Latimer...may be easier said than done. If I can just get my immunologist on the phone with Latimer she said she would write it. My third option is still my friend who is a pediatrician and she said she would write it if we could get direction from Latimer. Multiple options jsut waiting for the trigger to be pulled...thanks Buster for the info! Very helpful.

I know there are multiple ways to do IVIG but we are getting ready to do it here. My doctor is waiting to get dosing and protocol info from Latimer. Does anyone have anything to add...

I agree. We are in no way as bad as we were before the PEX but we are still having issues. We are waiting to get dosing info from Latimer and then are planning to move forward here in Charlotte. I have already confirmed with the doctor and hospital that we can do it here. We have an appointment with Latimer on the 11th ( a phone consult). It is interesting though. My son's symptoms now are much milder. We are not seeing as much chorea but more mood swings and OCD. Very interesting. Thanks...I will keep you posted.

I think it is the memory thing since we know Carter's antibodies were gone due to the numbers after pEX and they were at 500 and 700 during the relapse. We are preparing for IVIG here. I found someone willing to do it with guidance from Latimer. We are better but still not right.

I can't believe this made me laugh but honestly my mental state is not right at the present time. I have come to think my 6 yr old (non-PANDAS) child may have bed bugs in his room. I have yet to see one despite combing over every inch of his room by day and also examining his room at night with a headlamp on (hopefully that image makes you chuckle). I found three new bites on him today and I came downstairs and said it was time to get serious. It is time to call in the professionals. The are impossible to see and treat (much like pANDAS ) and finding someone who can help is also hard (much like pANDAS). I think it even involves calling in a canine to seek them out (this image also made me laugh). I swear we are clean people and in fact have our house professionally cleaned once a week. I asked my husband which fight he would rather take on...PANDAS vs bed bugs. He said beg bugs without a doubt! I am sure ever one on this forum would agree.

I did clear the allergy shots through Latimer before we did them. She said she thought it made sense and we should do it. I did seek her advice and it was wrong. It is hard to know what or who to trust. My immunologist even talked to the immunologist Dr. Latimer is using in DC before she came up with this plan. My son seems like he is slowly getting better but we have not done IVIG. My plan is to compelte the steroids and do IVIG if we are not back to baseline. I do think that even the experts don't truly understand this though. Latimer thought shots were OK and might even calm the immune system. Clearly they don't. I hope they can all get together soon and discuss these things to help clear these issues up. It is hard to know which advice to follow.

After finding an immunologist here in Charlotte that believes in PANDAS she ran a bunch of tests. My son has severe allergies and she recommended starting allergy shots to help "calm" his immune system down. We started them will he was in a mild exacerbation but had him also start 30 days of steroids. After only two shots he is worse. His movements are worse, along with anxiety, mood swings, rages, and OCD. I e-mailed her and told her we needed to stop. Her response was that we needed to push through to see if we can calm this down. I know that in 1989 the World Health Organization released a statement that people with autoimmune disease needed to avoid immunotherapy because it can make their disease worse. I think we are a clear example of this. She does not think we have done it long enough to see. I on the otherhand have seen enough! It is clear to me that only a few doctors understand this disease. Has anyone done shots and seen a negative effect? My guess is they open the BBB and let the antibodies in and also stimulate the production of the wrong antibodies but I don't know. Any thoughts?

Still waiting to hear. His strep titers fell after the prednisone but I am sure are abck up now after two allergy shots. We are stopping the allergy shots. He is definitely worse. I am waiting to talk to Latimer and the immunologist next week about proceeding with IVIG.

Very cool. We are now officially geeks though that we get so much enjoyment out of a scientific paper.

Well said by both of you. I also remember as I sat in the ICU at Georgetown that if given the option, I would take my problem anyday over some. Happy Thanksgiving.

Yesterday I took my three children to get pencil scetch drawings done of them for their dad for Christmas. This Russian artist was in Charlotte and is unbelievable. He draws your child in about 30 minutes (it was expensive but very good). He focuses on the eyes and then the rest of the drawing is a suggestion of the child. I was showing them to a friend this morning and they are great but there is something not right with my oldest's drawing. Then I realized it is because he is recovering from an exacerbation and I can see it in his eyes. They look sad and vacant. I even brought a picture immediately post-PEX so the artist could see this "life" in his eyes. I am not sure he understood me but said "don't worry about it". I started to get sad that now there is a permanent reminder on my wall about this nightmare but then I paused...maybe I need a reminder that I walk past each day. Maybe I am supposed to remember all we have been through and that to try to move on and forget that this happened is not right. This has forced me to slow down and focus on my family. This has also made me realize each day is a blessing, especially the normal ones that are often forgotten. It has made me more thankful for what I have and protective of it. My son is doing great on the steroids now and is almost symptom free. Our plan is to go to IVIG next if needed. I am still struggling with the "why my child" question but I am sure one day I will figure that one out too. I do think the journey is often the most important part of the trip.

I am wondering if the effect of the antibiotics are not because it is wiping out strep but modulationg/suppressing the immune response. I don't know that answer but it would be nice to ask the immunologist.

My son had awlful night terrors at 16-18 months. Awlful. Looking back it makes you wonder.

Yeah!

My son was mis-diagnosed with ADHD instead of PANDAS and we did try several stimulants. THey all made him worse. Symptoms went back to before when we stopped but they were no help.

Before we went we looked and Georgetown takes most insurance plans. Dr. Latimer we had to pay for but we applied it to our out of network deductable. We have BCBS of NC and they covered the PEX and all other hospital expenses. Definitely worth some investigation. I think the doctors know not to code it with PANDAS, but to code it with an immunodeficiency or autoimmune code diagnosis. Good luck.

From what I can gather it is a nonspecific test to see if an autoimmune process is going on. My iummunologist is trying to gather any info she can to possibly present to the insurance company in the future if IVIG is needed. Rheumatic fever and PANDAS are an autoimmune disease. It is thought the antigen-antibody complexes possibly seed the tissue in the basal ganglia.

My immunologist is having this done on my son on Wed. It tests for the presence of immune complexes in the serum and can show the presence of an autoimmune disease. It is not specific for what type of disease though. Seems like a good idea though. Has anyone had it done?

I am so sorry you are seeing things...my guess is your mother's intuition is right. My son flared afer H1N1 exposure too. I would up the antibiotic and even consider a strep test. If things continue I would do the steroids. We had resolution within 3-4 days and then once again a perfect 10 days. Now we are seeing some things again...interesting the teacher just e-mailed me that a boy in the class was diagnosed with strep today. We are seeing the immunologist today to see if she has a long-term maintenance solution. I will keep you posted. I do think that this all points towards this being an autoimmune issue though rather than an infectious at this point. If a virus can pull the trigger, upping the antibiotics won't hurt but it may take the steroids. Hang in there and please keep us posted.

We had a sleep deprived EEG which was normal.

Yes, mine was covered. I am not sure how they coded it though. We saw Latimer too.

I remember this from an article I read this summer...I don't have the article at my fingertips but I will look it up. I remember it said the flu vaccine did not prevent you from getting the flu but decreased the sick time on average by one day and decreased the amount of viral shedding by 40%. I will search for the article and post-it.

I got the H1N1 vaccine and I am giving it to my non-PANDAS kids. The vaccine decreases viral shedding about 40% if you get the flu, so it may help my PANDAS child who will not be getting it.

I know before we knew it was PANDAS we thought my son had restless leg syndrome because he moved all the time. We tried Mirapex with stimulates dopamine receptors (it is a Parkinsons drug used in RLS) and he got a lot worse. Drugs that antagonize dopamine receptors (like Rispiradol or Haldol ) would help. We were offered rispiradol by a neurologist who beieved we had PANDAS but we never gave it. At the time I was interested in treating the CAUSE and not the symptoms. I think Cunningham is working on a study seeing the effects of Haldol on mice. I heard her say that at one of her lectures.