mom md

We got moved from Mon/Tues to today and tomorrow but are almost finished with the infusion and it has gone great. Bless Carter's heartt, he threw up in the lobby of the hospital on the way in because he was so nervous. There went all our pre-meds we took at home! He had a lot of anxiety but once we got the IV in he did great. They put emla cream on him and did a great job. The whole infusion will only take 3 hours. They are letting him go home with his IV in so he does not have to get stuck tomorrow. They are using Gamunex at a dose of 1gm/kg. Our insurance company said that we have an 80/20 plan with a $2000 deductable. We have already met $1750 of it so they thought that is all we would pay. I was really nervous he would have some sort of allergic reaction given what happened with the FFP at Georgetown when we did PEX but he has had no issue at all. I am watching him right now eat chocolate ice cream and watch Scooby-doo. Thanks for thinking of us.

My son has a lot of leg cramps. He always points behind his knees so it could also be joint pain. He said he has it so frequently he never even mentions it because he has gotten used to it. His potassium levels are OK but the leg cramps are wierd.

Thanks for the IVIG update. We did PEX this summer and were about 99% for 4 months until a relapse in Novemebr. We are almost back to baseline with steroids but are doing IVIG next Wed and Thursday to help "re-set" the system and clear out any remaining antibodies. I really do think in our case this is needed. I am prepared to see things get worse before they get better as any remaining antibodies are flushed out but I know it will be hard to watch. Please keep me posted on wehat you are seeing as time passes.

We were given the SC/PANDAS diagnosis too by Latimer but she said it was a toss up. He was in full chorea last January and then after 4-5 days of azithromycin his chorea improved to small finger and shoulder rolls. After three months of azith his Cam Kinase level was 201% which was in the SC range. Latimer saw him 4 months after his major chorea episode and was still impressed with his chorea. That is when she said he was a toss-up between SC and PANDAS. His titers were still in the thousands so we proceeded with PEX with immediate resolution of his symptoms. I think the SC and PANDAS are all part of a spectrum. We had a relapse 4 months later after H1N1 hit our house which responded to steroids. Interesting his relapse looked more like PANDAS than SC. Maybe the PEX helped bring us down the spectrum? We are doing IVIG next week to help "re-set" the immune system. My son always tests negative for strep throat even when his titers are elevated. Dr. Latimer said we did not need the T&A a few months ago but maybe she is changing her recommendations. Carter is finally almost at baseline and we are going to do IVIG next week so I do not want to have him undergo surgery if it is not needed. I think I will let my ENT look at them but the immunologist and Latimer both looked at his tonsils and said they thought they were OK.

Nevermind. The nurse messed up and it is two consecutive days. I am just glad I knew enough to ask or she would have messed it up. I am not sire if she is new or they just don't schedule a lot of IVIG at the allergist's office. We are set up though now for Monday and Tuesday next week at the Children's hospital. Yeah!!!

I know it is 1mg/kg each day but should the days be back to back? Doing one day on Monday and then one on Wed does not seem right.

So the nurse called and said we were set up for IVIG next Monday and Wed 1mg/kg at Levine Children's hospital in Charlotte. That dose not work with my schedule but isn't supposed to be done on two consecutivedays anyway?

Have a safe trip and keep us posted!

A few weeks ago we were in an exacerbation with all the fixings...OCD issues, anxiety, severe rages, etc. Over the last 10 days it has been clear he has been getting better and better. Currently he is on azithromycin and steroids and we are proceeding with IVIG this month. We did PEX over the summer and at least our exacerbations are not as bad as they were pre-PEX. My son wanted to play basketball and I let him despite my fear that I might regret it. Last year playing was a nightmare. The coach yelled at him constantly and thought all his movements were just ADHD and behavior problems. On Saturday watching him it was clear he is doing well and it actually brought tears to my eyes. He could sit on the bench still and watch the game without moving constantly. When he was put in the game he followed the plays and looked just like all the other boys playing. He even scored in overtime! He was so proud and all th eother parents were congratulating him but they had no idea how far we have come. On a funny side note, he is gaining weight fast on steroids and actually looks pretty normal now (before he was really skinny). He weighed eighty pounds this week which is an eight pound gain in the last few months. He asked (with a sly smile) if he could stay on steroids so he could continue to gain weight fast and be able to sit in the front seat!

Thanks for the update. We are on the same path. We are going to do IVIG this month. Right now my son is doing well but he has just come out of an exacerbation. When you look at how good he is now it is hard to believe he even has an issue but I know he needs it. We have had two exacerbations since PEX (both of which were caused by illness). We are doing 1mg/kg and will plan to do the second six weeks later. After that the immunologist and Neurologist here in Charlotte will re-evaluate. Glad to hear you are moving forward.

I still struggle with that issue and do not know the answer. Carter's camkinase was 201% which is in the SC range...that was after his chorea was much less and after three months of azithromycin. My guess is had we seen Latimer when he had full chorea she would have definitely called him SC and his Cunningham numbers would have been even higher before the antibiotics. IStill to this day though if you have him stand against a wall and close his eyes with his hands in the air his fingers "play" a piano. Back before the antibiotics he was "breakdancing" around the house and playing pianos that were not there. When I watch you tube videos of SC it is exactly what he was doing.

I am so glad you have found this forum and glad you will be moving back soon. My son also was diagnosed with SC/PANDAS. I definitely think they are all part of a spectrum. I do think that it is often hard to figure out. I do think Cunningham's research test can help differentiate. My son was clearly SC and after 3 months of antibiotics looked a little more like PANDAS/SC. After his most recent relapse he looks more like PANDAS. If there is not a specialist near you I o think it is worth driving or flying to see one. Even if you end up getted treated in your town, the specialist can help guide your local doctors. We are getting ready to get treated locally with IVIG but Dr. Latimer is helping guide the doctors here in Charlotte.

Go to you tube and search for chorea video. It is really interesting. I searched under chorea, sydenhams, rheumatic, etc and saw a lot of good examples. My son was diagnosed with restless leg syndrome prior to getting the PANDAS chorea diagnosis. Looking back it was all PANDAS.

She told us one week ago we could do it very sparingly with milk or ice cream just for a very short time until we got the IVIG next week. I think it can lead to ulcers and possible GI bleeding if it is done together for long. I have been trying to use it very sparingly but I have to say I did it three times last week and it seems to have a very dramatic effect. We are tapering off the steroids now and hope to be off them soon. We are planning on IVIG the week of Jan 5th.

I do think that it also is like other autoimmune encephalitis (guillian barre) and that several IVIG treatments may be needed. I think the thought that one treatment is needed is not the case in several patients, especially the ones that have had it for a while. I thnk they really do not know the recipe that will work and most likely it differs per child.

I hope and pray the steroids work. I do think though that even if things relapse it is a clear sign that it is an autoimmune issue. Two to three weeks after we finished our steroids though we had issues again. The second round of steroids were not as helpful as the first and we are doing IVIG in January. I am sure Dr. Latimer will go this route if needed. I am so glad though that you had a wonderful holiday! Let's pray for a healthy new year!

Yes, because I think it is an autoimmune disease and not an infectious one. I think as we learn more we will view the antibiotic more as preventative and not as theraputic. I know Beth Maloney had success with this route but I think the autoimmune aspect needs to be studied more. My son has been back to baseline after PEX and steroids. Augmentin did not help and Azithromycin makes it tolerable but does not cure him. We are doing IVIG next month to "reset" the T-cells which is where I think the true treatment will be reached. I know no one really knows but that is what I think. The antibiotics are important but many kids will need more than that.

We are doing IVIG in January and my son is on steroids until then. I have noticed now that he is much better in the am right after steroids and ibuprofen and now give it around 5-6 o'clock when he starts to get really angry. In 20-30 minutes he is MUCH better. It definitely works for us.

streptococcal induced autoimmune encephalitis vs. autoimmune ecephalopathy induced by strep...just throwing another option out there

If our first infusion goes without issues I will be doing them at home. I nurse comes and does it. I think by not paying the facility fee also it is cheaper.

This was actually on my non-PANDAS son and since we had the bed bugs treated we have had no bites. They come in threes and kind of look like mosquito bites. The "canin unit" comfirmed we had them but we never saw them. We caught it early sothe treatment was pretty simple and cheap. They sprayed the bed and encased it. I have to laugh though that the bed bugs were easier to treat than the PANDAS!

Wow. That made me tear up and I definitely think it is worth being in the news for multiple reasons. I did call a reporter friend of mine who retired but she said she would have the FOX new anchor contact me. Unfortunately she did not but I will keep trying. I am glad you are home from IVIG too. YEAH!!! I hope we will be in the same boat soon.

Yes. Makes you wish they were a little bit older and could tell you those kind of details so you could understand better. Interesting, kind of like an aura found with some seizures but he could stop it from happening at times.... Susan

I think this is the hardest to manage. I can't believe how many rude and disrepectal comments are made each day. Despite the disease though I feel I have to reprimand him and point out that that behavior will not be tolerated. Often it makes him angrier, but I have to let my other two see that I remain consistent with not tolerating it. My best technique is just to send him to his room. It removes him from the situation (and from me) and allows him a peaceful place to wind down. Often he re-emerges later acting as if nothing has happened. For the 4 months post-PEX when we were briefly cured we did not have ONE cross word spoken. I have to continue to remind myself it is the disease talking and not him. I also have found taking several deep breaths slowly before I respond helps.

My son did this last week in school. He would suddenly fall down when walking to a class or even "slip" out of his chiar in school. I e-mailed Latimer and she said it was the rag-doll effect Worried Dad mentioned. Very strange. The teacher is really good and knows our situation and said something to me before she made a big deal out of it. She did say though that if she did not know he had PANDAS she might have thought it was behavioral. I think he got a good laugh from his friends every time it happened. I did ask my son and he said it just happened and he could not control it. The next week he said he occasionally could feel it coming on and would grab the bottom of his desk to keep it from happening.