mom md

I think one of the reasons we only had 10 days of things getting worse after IVIG is that we did PEX 6 months before. I think the antibodies we were targeting had only been in his system for 6 months. If we had not, I shutter to think of how bad it would have been. We did not have a clear idea of when PANDAS started but I think it was when he was he was a toddler. His Camkinase was 201, his ASO was 950 and his antiDNase B 1750. He was in full chorea before we connected the dots. At first when he relapsed after PEX I wondered if we should have just done IVIG. Now I think we helped speed up our recovery and make our IVIG treatment better.

We went to see the immunologist this week. We are now 5 months out from our IVIG. We did one in January and one in March. We see VERY minor things (for example an exaggerated fear of bees for a few days, a little more hyper, mild insomnia...but the last two could also be excitement over school but I think at this point my maternal instinct is right). She was thrilled we were doing so well 5 months out, but wanted to do one more IVIG in the next month because we are seeing mild signs and his titers are still high(ASO=390, and antiDnaseB 1:460...that is MUCH better for him). Her plan at this time is IVIG every 6 months until puberty. We can do it sooner if needed or next time if he is doing well, push it out a while. We will be doing the rest of his treatments at home. I showed her the NIMH release this month saying PANDAS existed and she was thrilled. She said with the two studies and that she could easily go into battle if needed. So far BCBS has paid but they did deny it last time and then covered it after we faxed them all of his records. She said she had no clear data to support her puberty theory but she is very optimistic. She said if we keep his immune system under control until then the immune system somewhat "resets". She said they have to repeat allergy testing on any child after puberty. That, along with the BBB closing should work in our favor. I left feeling so good. We finally know the enemy and what works for tretament. If we have to do a few treatments a year, we can handle that. This fall(Nov) will be the true test. For the last three years that is when we spiral down. We did have a strep exposure (his sister) in June though and seemed to get through it well. This summer he went to spend the night camp (unbelievable), has taken up rock climbing(this is the child who would not go on anything elevated), and tonight has a friend to spend the night. We are healing and getting back to our "new normal".

My son was on steroids and well hydrated before our first IVIG and did great. Our second one he was not as well hydrated and got a migraine day two. After no relief for two days I called the neurologist. He had me give him one of my migraine meds (amerge) and it relieved it. He got a mild rebound migraine the next day and took one more amerge. The migaine meds are not ususally used in children but there are several studies out there that support there use if other treatments fail.

Ditto on Dr. L. It took 4-5 days on 250mg of azith before I saw an improvement in both of my boys. My newly diagnosed son age 6 started it in June and we are keeping him on it until we see the neurologist in Sept. He still has some mild symptoms but the rages are gone.

We are close...probably 97%. We are trying the gluten free diet to see if we can get the last three percent. We go tomorrow to come up with our next gameplan. We are doing so well and his doctors want to keep him here. I think they want to do IVIG every 3-6 months. We are 5 months out now so I think every 6 might work. I can honestly say we were 99.9% after plasmaphoresis. It was immediate too. I do not regret it. We relapsed 4 months later but not to our previous level. I think the IVIG may be our maintenance. Our neurologist thinks this will be lifelong and we will always be "looking over our shoulder" for signs. Our immunologist thinks if we can be aggressive puberty may be rough but the immune system seems to reset. I hopeand pray she is right. Last fall when we relapsed and were awaiting IVIG we keep my son on continuous steroids for two months and then tapered him for two more months. I would see if you could get steroids until you can see Latimer. It is not a good long term solution at all but it can buy you some time. I can only speak from our experience but we did allergy shots for only two weeks (while on steroids) and it was clear they were making him worse. Doing allergy shots in patients with autoimmune diseases is risky. It can stimulate the immune system. I will never try it again. I also can't remember where you live...if it is atlanta let me know because I have some new doctor info down there and I can't remeber which parent was looking. If you can't get steroids I would give him Motrin in the mornings before school. It seemed to help some for us.

My son's ferritin was low (24) and dropped to 20 after a year of supplememntation. His small bowel biopsy showed mild inflammation (despite steroids and two rounds of IVIG). There may be some connection here with gluten sensitivity. I don"t know. His iron saturation levels were normal.

I have been told by two doctors here (GI and neurology) that a gluten free diet might be helpful to get the last few (very minor) issues under control. They are convinced that something is smoldering and keeping his immune system flared. My son is doing excellent, but now we are trying to keep him here. He had PEX last summer, relapsed, then two IVIG tx this year. They also want to give him one more IVIG in the next month before school. I have been dragging my feet on the gluten thing because my child has been through too much. I want to help him but I am struggling to keep him as "normal" as possible. He already takes more pills than an average 90 year old at age 9. I sent off to have a gene test done by Enterolab to see if he had a genetic issues. He has trouble keeping weight on, inability to absorb iron, and some mild GI issues. A blood test for celiac was negative but he had had three months of steroids and two rounds of IVIG when we checked it. An endoscopy showed mild inflammation. I found out yesterday he carries the DQ2 gene for celiac and also a non-celiac gene that makes him gluten sensitive. I called today to get more info and she said that gene could predispose him to autoimmune neurologic diseases. She then asked me if he had had any neurological issues. Needless to say I was floored. Maybe gluten is a piece in this whole puzzle...

Our pediatric infectious disease doctor recommended a hearing test twice a year if my son remained on azithromycin each day. There are a few rare case reports of hearing loss with the macrolides (primarily clarithromycin which is an older macrolide). I would definitely get it checked. I doubt it is the antibiotic but you should make sure and do a formal test with an audiologist.

Please know you are not alone in this. It is very scary to see your child get worse but like someone said...you know the IVIG is doing it's job. I think of it as "clearing the house"...it is going deep in the body to flush out abnormal antibody complexes...and if you are seeing things get worse it is working. I would be much more concerned if you saw nothing. After our first IVIG it was amazing what came out of the woodwork. I even remember once things had stabilized seeing another "rage " several weeks later. It only lasted a few hours but was so bad I had to leave so my child would not see me cry. It let me know the IVIG was still doing it's job. We treated him 8 weeks after the first and really so no real response. I think our new baseline had been reached. We are now 6 months out from our first IVIG and doing great. We even had a strep exposure last week and seemed to get through it well. The immunologist wants to do it again in August but I am not even sure we need it. My child is happy, calm, no tics, no anger, patient, and the list goes on. This morning he even apologized to me for running late to camp!!! We may revisit the dark place again but at least I know what works...IVIG

We have done both. We origionally did PEX because my son had significant chorea and Dr. Latimer felt the PEX cure would be immediate and IVIG might take 6-9 months to achieve the same results. Frankly we could not loose another year. PEX was immediate for us. After 4 days, the first day home my child could sit calmly in a chair. (He could not do that before). We had 4 months of our son back to perfectly normal. Frankly I did not realize he could be as good as he was because I had not seen it for years. I do not regret it at all. It was both theraputic and diagnostic for me. It proved it was an autoimmune issue for him at that point, not an infectious one. He did relapse though 4 months later the first time his system was challenged. He relapsed though not as bad as he was pre-PEX. Chorea was his big issue before and after PEX his relapse was more anxiety/OCD. Much like a lot of PANDAS kids. I think it pushed us back down the spectrum. The procedure + ICU costs etc was $40,000. BCBS paid but Georgetown wrote a lot of it off. We have since then dome two IVIG's. The first in Jan brought us back to our new baseline. Not as good as PEX but close. The second IVIG did not seem to do as much. We are now going gluten/casein free to see if we can get the last 5%. My immunologist wants him to do IVIG every 3-6 months and thinks we will do it again in August. She hopes he will need maybe two treatments a year plus prophalactic anitbiotics to keep him stable. She said we can do the IVIG at home from now on. Since we know what works, I want to sit back now and wait and see. I want to see what the brain can do to heal on it's own. We had a strep exposure/infection last week so we will see how "good" his immune system behaves. The neurologist here thinks this whole thing will be chronic like any other autoimmune disease. The immunologist here thinks puberty will reset the system. I hope she is right. I may be the only parent I know looking forward to puberty!

I have a strep test called Strep-Tester by Wondfo. I found them on the internet but I know they have a website www.wondfo.com.cn

Saw some stuff last night. We had a swim meet and my son did not do great in the first competition. His googles filled with water. He started crying (he is 9) and wanted to swim it again. He said it several times and made me ask the coach if he could. I knew he could not but he would not take no for an answer. He then wanted to throw his googles in the trash. I said no several times and then told him he would have to pay me $12.99 if he wanted to do it. The whole thing put me in a bad mood because this "cognitive inflexibility" is an old symptom. I made him eat dinner and then he seemed in a better mood. My husband thought the whole thing was caused because he was hungry and tired (he had a spend the night friend the night before) and thought I was over-reacting but I am not sure. My mother's intuition is oretty good. He seemed fine after that but we will see. We see the immunologist today so we will see what she says.

So far so good. Carter (my child who had BAD PANDAS...PEX followed by IVIG....has done really well. I have seen a slight increase in arm rolls and hyperactivity but it is mild and fleeting. My younger son Spencer (6) has had a slight increase in oppositional defiant behavior which we were just starting to see decrease after adding azithromycin. My daughter Emma has done great. We are seeing the immunologist Wed so we will see what she says. Maybe the daily azith is protecting us. I will keep everyone posted. I knw this day would come and I may see things get worse but so far so good. I will keep praying though just to be safe!

My son did this too. Dr. K said that it has to do with excitement. When excited the blood brain barrier opens and you will see symptoms. Made sense to me.

No. I ordered them from the internet. Anytime anyone get's sick I do one. I think a box of 25 was about $25.00. I think I had to enetr my medical lisence number but some internet sites you don't.

Great idea...I will start it now!

I knew this day would come. Thursday morning my daughter developed strep throat. She threw up once and I tested her with a kit I had. Positive. I took her in later to confirm. Positive. In the meantime I put masks on everyone and sterilized my house. I gave Carter 500mg of azith and then started praying. I sent my boys to a friends house for the day. I did nor let them come home till late and then swabbed him...weak positive. At that time it was too late to call the doctor and he had no symptoms so the next morning I took him in. He swabbed negative but the doctor thinks the 500mg of azith he got the day before may have been why. She put him on a cephalasporin (as well as my 6 year old son). Still no symptoms. This will be a true test. I will keep praying. I think we have done all we can do. We have done PEX, IVIG twice and have been doing great. I have to remember at least I know what works if it comes back!

A wonderful idea!!!! Count the Bowles in!!! Claire

I think shirt chewing can be considered a tic. Once again though, I am not a neurologist. I think of this now as a more PITANDS picture...the symptoms resurface when the immune system gets revved up. I am now trying to protect him from any virus, not just strep. I just know that antibiotics alone are not enough. I am now focusing on Vit D supplementation, glutathione, hand-washing, sleep, diet, etc to improve his immune system. We meet back with our immunologist in two weeks and we will see what else she has to add.

I do not think it is an infection increasing his titers but an autoimmune response. He had pneumonia last fall and was on high dose IV antibiotics and oral antibiotics for weeks. I think...now this is just my opinion...that his T cells are making the antobodies anytime his immune system is challenged in any way. We see our immunologist June 16th so we will see what she says. When we fight this as an infection we tend to chase numbers and antibiotics. When we treat this as an autoimmune infection we tend to make great progress. After my son took azithromycin for 4-5 days his chorea reduced dramactically. We will see in a few days what it does to Spencer's moods/rages. I will keep you posted. He swallowed a pill today though so I am very proud of him! (We did it using ice cream.)

As many know, my son Carter (9) was diagnosed last year with PANDAS. We have been down the complete road...antibiotics, steroids, PEX, and IVIG. WE are now 95% but will not stop until we are at 100%. Unfortunately my younger son Spencer (6) has started showing signs. He began with transient tics (shirt chewing) at age 5 after a skin strep infection, and now has ADHD type behavior, impulse issues, oppositional defiant behavior, cognitive inflexibility, and sleep issues. I checked his ASO (384) and his antiDNase B (960). The child has not had a known strep infection since last spring. I was in denial for a while. Too exhausted to accept it but now I am ready to deal. I took him to the pediatrician (Margaret Siegel, MD) yesterday. She is my new pediatrician and I am already thrilled. I told her I know these things seem minor, but I know where I am headed. She called the neurologist (Tessita Nelson,MD who books out till December) and has agreed to see us later this summer. This neurologist has seen my other son. At Carter's visit she said she was fascinated with all this. She views it as an autoimmune basal ganglion syndrome that was probably started by a strep infection. She did say she was concerned that this could be more "chronic" than I had orgionally thought and he might need IVIG every 3-6 months to keep him at baseline. She also asked about my other two children. She said it often can affect a sibling. She said she had experiance with PANDAS from her training at Baylor. She wants an MRI of Spencer to rule out any other causes and then will help us treat this. In the meantime she wants him on azith for 30 days to see if it can calm his immune system. I also have another neurologist here (Jean Corbier, MD) who believes in PANDAS and is willing to treat. He is hiring two new neurologist this summer so he can focus on autism and PANDAS. He said after July he will be much easier to get into see. YEAH!!!!!

To try to give this thread a little hope...comparing where we are now to 1 1/2 years ago is night and day. The word is spreading, and some (not the majority) are willing to listen. When we were diagnosed Jan/09 we basically had two choices of where to go. Now the list has grown. There are now 3 pediatricians, 2 immunologists, 1 gastroenterologist, 2 pediatric infectious disease doctors, and 3 pediatric neurologist in Charlotte alone that believe it is a real disease and needs to be treated. Now, they are still struggling with what to do to treat it, but are fascinated by the disease. I know also there are doctors at Wake Forest that will treat too. As a mother and a physician who has a child with the disease I think that I have more luck than others getting people to listen. I am alsways happy to talk to anyone that will listen about this damn disease. I really think it is not rare, but we are just smart enough to figure it out.

I think the IVIG way overides any immune modulating effects that the azith might be helping. Also the azith half life is 68 hours so you are not seeing the effect of decreasing the dose yet. I think you are seeing the post IVIG flare that indicates the IVIG is doing it's job. Our first flare lasted a good 7-10 days. Hang in there and know the increase in symptoms is actually a sign the IVIG is working.

My neurologist says it takes a while for the level to get high enough in the blood at a steady state to have an effect. She made it sound like it would take a few weeks to see...hang in there and keep posting your findings!

Thank you for your post. I needed to read it today. I will show it to my 9 year old and let him know he can PM you if he has any questions. It is his inability to let me know if his actions are in his control or not that are so frustrating. Maybe you could help him articulate what he can't say. Thanks you and we are all cheering you on!!!!