mom md

It is all very confusing to me. The immunologist used the word immunodeficient, but this category also includes abnormalities of the immune system where it "over-responds". i think she means he does not respond appropriately. I think the immunology stuff just taking PANDAS to the next dimension and finding out why it all happened. He did have diptheria vaccine and prevnar and just did not get immunity. This whole thing is both a relief that we are starting to understand why but also scary to that he may be susceptible to more things. My husband's reaction was one of anger and frustration. He does not understand the thought process and wondered why we did not just do IVIG if that is what he needed. I tried to explain to him that the PEX fixed the PANDAS and the IVIG would be preventative. I think he just is angry that we keep subjecting my son to tests and treatements. He is doing great right now and my husband just wants to go back to normal. I on the otherhand, want to prepare so this never happens again. Yes, the vaccines scare me and I would not give hep a or anything I don't really think is needed. I really think he may be immunodeficienct and we need to figure that out. So, how to you do the pneumococcal challenge test? Does he get pneumovax and then check his blood three weeks later? The PANDAS saga never ends...

We saw the immunologist Friday and she said my son is more than likely immunocompromised in some way. She said he has horrible allergies which are not well controlled and we need to start allergy shots. Latimer said this was fine. He also failed his diptheria and prevnar vaccine and she wants to repeat them. If he fails the prevnar again we will start IVIG on a regular basis. She said she would do Vivaglobin which is a new subcutaneous form which can be given at home weekly. She said it is much easier. She also said that she would go to battle with the insurance company and they would have no choice but to pay if we prove he fails his vaccine. She and I talked about the fear of vaccine starting PANDAS again and she said, we can treat PANDAS but if he is truly immunocompromised and you don't know it things could get much worse. She also wanted him to get both flu-shots ASAP. She did say all these vaccines needed to be given seperately so he only deals with one at a time. Last week I could not find a flu shot and so I guess I will try to do the prevnar this week. On a side note, I am sitting in the hospital now with my other son, Spencer who is 5, who has pneumonia. I think it is bacterial but it hit him like a freight train Thursady morning and we were admitted Friday. His flu was negative and they think it is strep pneumonia. The flu test is only 50/50 so they are not sure. Strep pneumonia is a different strep than strep A and not very contagious. It makes me a little anxiuos though that Carter failed his prevnar vaccine. We are doing much better though and should be discharged tomorrow. For the first two nights though we thought it was swine flu and pneumonia. Very scary. After being here and watching a child who is so sick and seeing the report of 88 kids dying from swine flu I think we will all get the vaccine. My thought is Carter(who had PEX) probably is somewhat immunocompromised and not getting the vaccine could possibly be something I regret. I know it is a tough decision but that is where I stand on it today.

Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, NIAID-supported Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2177 email: madeleine-cunningham@ouhsc.edu Just e-mail her and she will get the kit to you. The test is experimental and not covered by insurance and will cost 200 dollars. It takes 3-4 weeks to get the results. I really think she has found the correct test though and I think it is important to get, especially before you do something invasive like IVIG or PEX.

I am so glad you are seeing Dr. Latimer. We saw her in May and did PEX July 6th. My son had rapid improvement and I barely, if any, see any signs of PANDAS now. He is not only "normal" now but really doing wonderful. I too had some very dark days but hang in there. I truly believe relief will be there soon. Dr.Latimer really understands the disease and is wonderful. Good luck!!!!....by the way, your boys are beautiful.

Thanks for eveyone's input. I am leaning toward not getting it but I need to think a little more. We did not have it available here now yet but if we do I want to get my son tested if he get's sick so I can have the knowledge of H1N1 and skip the vaccine. I also appreciate this tips on immune system builders. Currrently he just is an probiotics. Does oil of oregano test bad and can you get it in a capsule. Thanks, Claire

I am also very confused with the vaccine question. I know I don't want to vaccinate but I could possibly treat PANDAS again and not pneumonia and death from swine flu. If all these kids are "immunocompromised" aren't they the ones that need the vaccine. Latimer said to give the regular flu but not H1N1. My immunologist said get both. Dr. K said none. I don't know what to do! Also, my son tested negative for the prevnar vaccine and diptheria vaccine. Apparently, diptheria and tetanus are vaccines that you very rarely test negative for. (He was positive for tetanus immunity). We are heading back Friday to the immunologist to find out what this all means. Did anyone else find their kid was not immune to diptheria, and if so would you re-vaccinate? We are three months post-PEX and doing great.

As the brain heals you see previous behaviors re-surface.

I do think that healing process is like the healing process of encephalitis. For the first 6 months, several steps forward than back, the progressive healing for the next 6 months, then fine tuning for the next year. The IVIG removes the antibodies but takes several weeks to work. It takes 3-4 months before you can see the full affect. Also, I think the nerves "misfire" as they heal. We had PEX July 6th anf 3-4 weeks after had 48 hours of regression and then everything was fine. I still see small issues when he gets tired or overheated. Dr. Latimer said this was all normal. I think the doctors need to do a better job of educating the parents on what to expect post-treatment. I think it takes a long time for the brain and nerves to heal and that the recovery is not as immediate as we think or hope it to be. This sounds like the "turning back the pages"as Dr. K described.

I change mine each months. I have no data to base that on but it is cheap and makes me feel better.

We had drawn the Cunningham test but did not have the results when we went. She offered us steroids, IVIG, or PEX. Before that though she went through our history and EVERY thing I brought (even private school testing). I let her know I was ready to be aggressive and she was very receptive. Good luck!

I too, can't believe the child I am seeing. It is like meeting your child for the first time. Yesterday his school pictures came home. When you compare his picture this year with last year it is unbelievable. Last year his eyes were vacaant and dark. Thsi year his eyes are sparkling and alive. Very eerie.

Looking back though the journey did begin at 4 -5 years old. He is now eight. we were given the diagnosis of ADHD, OCD, anxiety, restless leg syndrome, dysomnia...before someone finally asked us if we had had a strep infection. Once I got the diagnosis I just pushed hard because I felt we had already wasted 2-3 years.

Just go see Latimer and get IVIG or PEX. Don't mess around with the doctors around you if they are not willing to do IVIG or PEX. That is what your child needs if you can make it happen.

Maybe if we all band together and collectively write the show...along with People magazine, Good Morning America, Dr. Phil, etc...at least the drama seeking news shows will get it out and maybe the medical profession will have to pay attention. I have to say it makes me embarrassed for my profession on how this whole thing has been handled. As a physician, I am happy to tell my struggle and journey to anyone who will listen. I don't want to expose my child but I would do it if I could save another.

No-where is it? I am still waiting on his discharge summary and I can't remember the dose. I think it was 2mg/kg every 12 hours but that may be completely wrong.

We chose PEX because Latimer siad our titers were in the top 2% of all cases and she thought it would take 2-3 IVIG treatments or 6-9 months vs. 3-4 days with PEX. As a physician and surgeon, the ICU and central line did not scare me. My son was sedated to get an MRI earlier so I knew he would respond fine to the sedation part. The total bill was around 42,000. BCBS picked it up. We paid a 1,500 deductible but most of that was reached by the MRI. My son had an allergic reaction to the plasma proteins in PEX. We had to do IV steroids around the clock to get through the procedure. He was a little irritable and did not sleep well but looking back that may be why we saw such quick, dramatic results.

I am a firm believer than everything happens for a reason. For some reason we were all supposed to have this "mack truck" hit. We were the ones chosen, and my guess is it is up to us to figure this puzzle out and make it easier for those who come after us. We owe that to ourselves and to our kids. I promise that I will see good come from this. On this forum, we have already accomplished that. The theme of this forum was very desperate back in Feb/March and now all the posts talk about how to be cured not just live day by day. Looking back on all the ######...at some point I will view this as a blessing (not a curse), but I am in the early stages of healing and my wounds are too raw. I can tell you though, I get joy now beyond belief in the small things I see now. The smile on his face when he goes up to bat...the smile on his face when he gets off the bus. This has made me slow down and smell the roses.

Just wanted to keep everyone up to date on our progress. I know it is always helpful on this forum to read some good news. We are 10 weeks post-PEX and getting better and better each day. I would say we are 98-99%, consistently each day. We were told the encephalitis would take 1-2 years to completely heal which actually medically makes since since we are dealing with the brain which is slow. We were told the first 6 months were two steps forward, one step back, then steady progress for 6 months, then fine tuning up to two years out. I have to say our expectations have been exceeded. My son goes to a very demanding school and tonight I talked to the teacher. She said they are seeing almost nothing of concern. Two weeks ago he was having subtle vocalizations which are now gone. Interesting, she said he will be reading perfectly but after a while gets "choppy". My guess it is fatigue. She said he sits still, is pleasant, focused, bright, etc. She could not say enough positive things. He was the first one in the class to publish a story he had written with the school. Last year he was completely unable to write because he had so much anxiety over even making the decision about what to write about. Unbelievable!!!! Just wanted to share some good news.

I told my son we figured out what was making him do so many things and get in trouble at school. I told him he got a strep infection and the "soldier" that his body made to fight the infection got confused and started making his brain do things. He said, "see I TOLD you I was trying in school". He looked relieved we had finally figured it out. Occasional when he would do something he would say "the bug" made him do it. He even got so he could joke about it a little. When we went for PEX we told him his body did not understand he did not need the soldiers anymore so we were getting them removed. He would then be cured. He takes antibiotic so he won't get the bug again. He was seven when we told him and he seemed to both understand and be relieved.

Dr. Latimer is out of network for BCBS but Georgetown Hospital was in-network for BCBS and they picked up the tab for PEX. Not cheap either. I think we ended up just paying up to 1500 which was our in network deductible. However they coded it worked.

She has three PANDAS patients now and asked for the info of all the experts I found around the country so she could work with them. I have given her everyone's contact info including Latimer, Swedo, Cunningham, Leckman, Gupta...etc. We go back in 2 weeks but I do think there is some issue with the immune system which is the basis for this disease. She seemed interested and willing to work with us.

I spoke with Latimer and she said they recovery is slow...just like encephalitis. With encephalitis you see two steps forward, one step back for the first 6 months, then the next 6 months are fairly progressive recovery. The next year they are still recovering and the fine tuning is done. She said any time they are tired, over-heated, etc you will see "flash-backs" of before. It is sort of mis-firings as the neurons heal. She said they have not done a great job telling parents what to expect so this was helpful. My son is doing great and he still has some physical findings on exam. He also has some mild vocalizations, poor impulse control, and subtle chorea things when tired. Please keep me posted. I am so glad he is healing...it just takes time.

We saw Dr. Latimer yesterday. She said she thought the regular flu vaccine was fine but she would not get the H1N1 vaccine, nor would she get it herself or let her kids get it. I agree, no H1N1. What do you think about the other?

We got our labs today and we failed 10 of the 14 prevnar levels and diptheria vaccine as well. His IgE was extremelly elevated (240). Have not great idea of what this meand yet but interesting. We are heade to see Latimer Wed and the immunologist again in three weeks. We are also allergic to soy and baker's yeast. Very strange.

mom_md.... how do you feel on the topic of the allergy shots for PANDAS patients? We saw the doc today and we really like her. She will be talking to us at some point about allergy shots too. She's also interested in revaccinating for prevnar due to the failed pneu titers. Do you have any thoughts on this? I let her know my worry about any vaccines at this point. She and I will talk about it all again after she fully reviewes all dd's records. I was especially impressed because she wants our entire medical history from birth, as much of it as we can find. We go back in a month and will take it from there. I feel like she will do her best to find out the underlying immune issues we are having so I would recommend her since she has a high interest in PANDAS even though she is still in the learning phase. That is great. Just finding someone that is willing to take the torch from you is great. As far as the allergy shots I think it is a good idea, especially after IVIG or PEX. My guess is Carter's immune system is on constant alert with all that he is exposed to...maybe that has something to do with why we wound up here. If we can get his immune system to calm down, maybe he won't over-react to strep if he is stronger. I have absolutely no data to base this on but it makes sense. He is miserable with his allergies so it may also help his quality of life. She was definitely ready to do IVIG again if needed. I will work towards getting her looped into the right people to guide her...Cunningham, Leckman, Latimer, Swedo, etc. Overall, i think getting an immunologist to investigate this makes sense since ultimately it is a disorder of the immune system. Susan