mom md

Eileen- I am so glad your daughter is doing so well and I know the rollar coaster of emotions. Seeing your child at their best makes you realize even more how far off from that they were, and also so fearful it will be taken away. The fact though that she responded so well just confirms that it is an autoimmune encephalitis. When Carter had his relapse 4 months after PEX. after 2-3 days of steroids he was back to mormal. He finished the steroids last week. We had our teacher conferance Wed and she said despite the 2 days when he relapsed she would never know he had any issues. This is amazing because school was were he had the bulk of his issues. I got an e-mail from his PE teacher yesterday telling me he can't believe how focused Carter is in class! Never though I would ever get that e-mail. Now that we are better though to keep me calm I am trying to educate the doctors around me at home and get a plan in place. Even if all we do is do steroids quickly in relapse I will sleep better knowing if we can get them quickly. We are continuing azithromycin for the next 6 months due to the immune modulating effects and then will probably switch to the rheumatic fever protocol. We are meeting with the immunologist Nov 16th to come up with a long-range plan. We are also going to start allergy shots soon to help boost his immune system. I agree though with what you said, if you had to do PEX even again, it would not be that bad. I am so sorry you are having issues with insurance. I would definitely fight it if you got pre-approval. Good luck and keep us posted.Claire

If you look at the literature the tonsil and adenoid surgery does not seem to make a difference in PANDAS patients and I would not use the surgery to differentiate between TS or PANDAS unless he really needs them out. If my child had a CAMKinase II number in the PANDAS range and I was trying to sort through this I think I would try a short course to see if it was PANDAS first. I think your odds are pointing in the direction that it might work and let you see if it is an autoimmune encephalitis. It will give you a lot of knowledge. Dr. L treats a lot of TS kids too and I don't think she would tell you to do it if she did not think it might be a benefit.

When I asked the pediatric infectious disease doctor about Augmentin she had the same response. She felt you were possibly setting yourself up for another set of problems. I think this was what she was reffering to. I think azithromycin is a great choice because it is immune modulating too. I am so glad you found a pediatrician who is willing to help!

Just an interesting thought. We saw the pediatric infectious disease docotr yesterday and she said she felt azith was probably doing more to help because it had immune-modulating effexts than actual strep prophalaxis. She was interested at some point in time in changing him to the rheumatic fever protocol because she felt we could protect against strep better. Makes you wonder if doubling the azith dose is just suppressing the immune system? She was VERY against using Augmentin for prophalxis. She felt it was way too strong and should be in our back pocket for strep infections, not prophalaxis.

I just ordered some rapis strep tests online! I do not know why I did not think of that before! Thanks SF mom! I am definitely a little strep obsessed though. Tonight my 6 year old (non-PANDAS) said his bottom hurt and his anus was really red. I immediately started thinking that if it did not get better with an antifungal I would take him in for a culture. He completed IV rocephin and omnicef two weeks ago so it is probably yeast but I would love to be able to culture at home.

Can you post the Swedo PEX/IVIG trial and the 4 adult cases paper. I don't seem to have those in my file and I would like to add them. I got the "controveral" diagnosis line too from the pediatric infectious disease doctor, but she seemed interested in reading Cunningham's paper. We are seeing a new neurologist at some point and I want to show up armed and ready! I did laugh when I read your statement about a mom that spends too much time on the internet...I get that look too sometimes and I have a medical degree! I think it is hard when you show up to a specialist and come with all the knowledge we have and they get a little defensive right off the bat. I have yet to meet a "specialist" beside Latimer that knows more than I do on the subject which is hard. I think if we continue to come with papers, etc they will listen. I am SO glad you feel like someone may be able to help!

We saw the pediatric infectious disease doctor today and will plan to keep Carter on azithromycin for now. She was not sure it would do as good of a job as amox or Pen VK for preventing strep but felt the immune modulating factor was probably helpful at this time. She felt Augmentin should be reserved for "flares" or strep infections and did not like the idea of using it long term. She felt we had done truly all there was to do so far and was impressed with what we had done so far. She did feel like the strep prevention was important but felt that it did not take a strep infection at this point to make him flare. She felt like doing IVIG for maintenance sounded good. She offered to do it in their infusion center and felt like getting it covered would not be hard since PEX was proved to work. The immunologist felt it would be harder to get covered. The pediatric infectious disease doctor said we could consider changing to the rheumatic fever guidelines as time passed and I felt more comfortable with him being stable. She agreed that "not rocking the boat" sounded good for now. She was impressed with his ASO of 1750 but also knew that the titers were not needed to diagnose the disease. She encouraged me to continue checking them during remission and flares because Carter's seem to rise and fall and it is a tangible something for insurance companies to see. She did not seem to be aware of Cunningham's work but I brought her the article and our results. She said she would be happy to work with the immunologist here and also wanted to resume behavioral therapy maybe in the spring. She felt like hitting it from all angles (antibiotics, immune system, neurological, and behavioral) all made good sense. Overall I guess it was productive, although I felt like I knew more than she did. My hope is to increase her knowledge though and if we have antibiotic questions along the way she can help. We will go back in 6 months.

My son too had a complete aversion to being touched, especially on his face. Even wiping his mouth would cause his to jerk back. A very interesting finding. Worried Dad- I am so excited for you and your family. I understand seeing those small events that seem small to other people but mean the world to you and your family. I also think seeing your child act normal is very comforting too. Despite all the crazy stuff it lets you know that no damage has been done long-term and that your child is still in there. Hooray!!

Basically when you do PEX, the immune system "library"is still kept intact. It removes any antibodies that are in the blood, but not the ability of the memory B ceels to fight infection. For example, if you had Parvo virus as a child, your immune system will remember that and you can't get it again, even after PEX. If you had a flu shot though 2 months before PEX the B cells have not had time to commit it to memeory and the benefit would be lost. The more I learn though, the more I am concerned that the memory B cells and Tcells may need to be re-trained which is the purpose of IVIG. I think the purpose of the antibiotics is to prevent the exposure to strep and the production of antibodies by the T cells. For children that have had this a while, one dose of IVIG and PEX may not be enough. I think if this disease is caught early, antibiotics and possibly steroids can work and be enough. For those that continue to produce antibodies to strep just with any stress on the immune system more maintenance may be needed. I think this is the purpose of being evaluated by an immunologist if your child has had it a while. I am trying to see if PANDAS is a symptom of a larger problem with his immune system since we had it so long.

The PEX only removes any immunity he has just built up in the last 2-3 months. The "history" of his immune system is safe and secure.

WE are meeting with a pediatric infecious disease doctor on Monday and I will ask that question. I still think though the issue is the immune system more than an infectious one. My son seems to flare with any big physical stress. It does not need to be a strep infection. I am going ready though on Monday to ask a lot of questions about antibiotic options.

Happened to us too. Has the cavity filled with nitrous and saw a slight flare and then things calmed down. I think anything that stresses theirimmune system (even a cavity) can do it but hopefully it will be transient. I would just watch her and see if some Motrin will help. If things get worse I would call your immunologist and see if he would give you a short streoid burst. Hang in there...we are all in this together!

Just found out Carter's cam kinase was 99. Normal is 98. Pre-PEX it was 201 which was in the SC range. We were only 3 months post-tx when we drewit. It may have gotten back to normal so quick because of the IV steroids we had due to his allergic reactiion to FFP. We are still waiting for his antibody titers, but it means his brain is healing!!!!!! I am not sure what the relapse we had last week means, but he did respond to steroids within 2-3 days.

I think you are exactly right but the reason we did so well were the IV steroids. It made the hospital stay rough because he would not sleep and yelled at me a lot but when we left he seemed almost back to normal. I just recieved his CAM kinase II level 3 months post IVIG...99!!! Normal is 98!!!! This all means his brain is healing.

My son had been on antibiotics for three months and was still in the SC range. I would not worry about it.

we did 1mg/kg x 5 days, 0.5mg/kg x 5 days, then a four day taper. We are on day 9 of 14.

Before we were finally disgnosed with PANDAS they thought he had restless leg because he was arousing 14 times an hour. We gave him Neurontin (100-200mg)and it worked well.

I would not do it. We did the regular flu shot last week and 72 hours later had a flare. The ASO was up to 500 and the antiDNase B was 680 so my guess is the shot was not the cause because it takes 2-3 weeks to rise but it does confuse the situation. I think the immune system is not right in these kids and it is unknown how they will respond. It is like Russian roulette. You are probably fine but no one can tell you for sure.

It took about 3 days and then we started to see real improvement. I saw my son's teacher this morning at the Halloween parade and she said they have had two PERFECT days. I am starting to relax a little now. If we "relapse" a few times a year and respond to steroids, I could handle that. The immunologist still thinks he needs regular IVIG but we are still trying to figure out how to get it paid for. She called the immunologist in Nebraska who teaches at UCLA and treats other kids yesterday, as well as Dr. Latimer, and the immunologist she is working with in DC, Dr. Bellanti. She is really trying to understand this disease so she can treat my son and the handful of other children she is treating with it. I feel so thankful to have found her.

We definitely have PANDAS and had a waxing and waning course and have no idea when it started. Maybe it was 4-5, but occasionally I think it may have been even sooner like 2. Looking back, the symptoms were there but always diagnosed as something else. We definitely did not have the abrupt onset, point at the date on the calender presentaion.

He is 63 ligs. He has img/kg x 5 days, the o.5 mg/kg x 5 days, the a taper for 4 days but I don't know the dose. Dr. latimer's suggestion was 2mg/kg x 5 days, then 1mg/kg x 5 days then taper. Diana said only 1mg/kg x 5 days only. My guess is it can be done several different ways.

My son had nightsweats for the first two nights on Prednisone. He has those with PANDAS flares though so I don't know which caused it. I was so desperate to start the steroid I started it at night but have been creeping the dose back to morning and now give it at 7am. He is doing MUCH better and it is working.

I think it is fine and you can probably give it every night for a while. Sometimes though if you take any sleep aid for a long time (like a month) you can get a little chronically tired. You do not go into REM sleep as much on sleep aids which is where your body does it's deep cellular repair work. I also think the anti-inflammatory Motrin could also help.

I do thinkit is a good idea to see an immunologist now that she is better and just see if there is any way they can figure out WHY this whole thing happened. Even if all the tests are Negative you are looped into an immunologist that can help if you ever need them. I think it is really important for us all to have a support system of doctore inplace in our own town. Hopefully, coming in with a copy of your discharge summary from Georgetown as well as yourchild who is now cured will get their attention. My son is responding really well to the steroids so don't live in panic. If the PEX works, any major bumps can probably be controlled with steroids. I am on a quest though to figure out why. My partner's medical school roomate is an immunologist at UCLA and I am going to e-mail our info and get his two cents. I am currently working with a very good immunologist here, but is she can't figure it out there is someone at UNC we will go see. I think the more I get the "why" question answered the safer, and more in control, I will feel. I have a feeling that the PANDAS may be a symptom of larger problem with the immune system. I am trying to gather info in a state of calm so if we need something in the future we are ready. I also am going to see a pediatric infectious disease doctor on Monday. I really thin her input will be valuable. I will comntinue to post with any progress i make. I do know your fear though. It is as if seeing that your child has returned and was in there the whole time makes you only more fearful of what you may lose. I think we all learn to accept some of the things that go along with PANDAS just to survive but when they are gone and you realize how perfect your child is, you get very afraid to go back. We have just finished the 5 day burst and started the next 5 days of a lower dose, and then a four day taper. It took about three days but I can definitely see it is working now. My son went on a field trip to a dance studio with his class yesterday (the ultimate lithmus test) and he controlled himself. In our history, PANDAS and a fieldtrip, were the perfect storm. I am strarting to relax but am even more fueled now to get to the bottom of this.

Where in NC are you? I can send you some names in the Charlotte area.