JoyBop

That's funny, my DS is just the opposite. He gets sucked into electronics and tends to tune humans out. I would also much rather the home tutor or better yet, the private school. The unknowns are, does the private school want a challenging child? And will the school protest our doctors request bc our child is able to leave the house. It will again have to be up to our psychiatrist is she is willing to put her name on that request. I don't want to be dishonest or take advantage of the system but I will get my child out of that toxic environment. The home school is a last resort for me. That would be the ultimate sacrifice as I would have to give up my job and the break I would have gotten while he was in school. Yes, as much as I adore him he is can be quite difficult to manage. I want what's best for him and hopefully the school will try to accommodate.

Totally second what qannie said. We all go through what you are experiencing from time to time. We have to realize that this is our new normal for now. There is a light at the end of the tunnel bc you are here and you are treating your child. Yes, there will be bumps in the road but you are on your way. I know sometimes you get caught up in the cyclone and you don't know which way is up. I have 4 kids, two with pandas and two in puberty, I know all about it!! But if I let myself wallow and worry too much everyone suffers. We have a motto. Celebrate the good days and just get through the bad. I can say these things now bc my kids are on the bright side. So please feel free to feed this all back to me when I am at my breaking point. That is why we are here!

Rachel, I'm so sorry for all you and your son have been through. Does he have any other diagnosis due to his physical ailments? I was unaware of those types of symptoms, other than difficulties caused from tics and choriform movements. It sounds like your child could possibly have some other type of illness. Have you seen a number of specialists? What are his neuropsychiatric symptoms like? Were you ever able to find an infection or trigger? I'm sorry if you already posted all of this and I missed it. But it really sounds to me like something neurologic is going on in addition to pans or pandas.

Rachel that sounds amazing! So you spend 6 hours a day on the site? Are there any check I a or personal interaction with teachers or coaches?

Rachel, wow! I had no idea. I just googled it and MA does have a free online school called k12. Anyone out there have any experience with it? I would definitely consider if the other two options fell through. Thanks for putting that on my radar! Would you please tell me what system you are using, if it costs anything, and how long you spend each day on school?

Wow. Thanks for hat insight. See my newest post, when the current school system isn't working. I've already come to the conclusion that in not going to fight that fight. They have one chance. Our meeting is now pushed off to the first week in Feb. Our dr is going to be there. She's the one who diagnosed him, she'll be observing him on wed,, and she's going to tell them what he needs. If they don't agree or deliver I'm out of there. Either home/hospital school if we can, or a small private school if they'll have us. In a worst case scenario, I'll home school him until middle school. He's already in the charter middle school die to sibling law and and they are amazingly helpful. I have a child on an IEP there and they call me asking how they can better serve us. I've decided its not worth him suffering and me seethinfn. But I'll give it a chance and see where it goes. Insincerely Hope that your child is doing well and now in track! You deserve a medal for all you went through. Thanks for sharing your experience.

Nickle Mama, I hear you. I have already hired our Dr. to be our advocate and I dont want to step on her toes just yet. If we fail to get anywhere, I think Ill put that money elsewhere instead, such as a private school or lessons to supplement the home school idea. Does anyone have experience with the home/hospital school? It doesnt seem as though the school can disagree with the doctors referral for services, but Im curious to know if anyone has ever had the school refuse or put up a fight. Im guessing that my child will have to literally be unable to attend school to get these services. Now, he does willingly attend school, but mostly bc hes afraid he will be arrest if he doesnt. (Irrational fear) We still have a ways to go before I know how this will all pan out, but at least now I dont have to worry because I know Im not at the schools mercy, and I have other options. Even if I have to buy an online program and homeschool him myself for a couple of years. Still, wouldnt it be a wonderful surprise if they were willing to accommodate?

Smarty, as always, thank you for all the insight!!! DS is 8 and in third grade. His classroom teacher is beyond wonderful and she deals with him beautifully, but she basically just allows him to wander around the classroom and disengage, as not to make him feel badly about himself. While this is good in some ways, it does nothing to address how to help him function better, or access the program. Also , all of the other teachers in school hassel him and dont allow the behavior and he cries every night bc "all I ever do is get into trouble!". Things like, "The gym teacher made me sit in time out because I was chewing my nails." The homeroom teachers allows him to wander, but the other staff members have a FIT about it! So what are we teaching him? He never knows what to expect, gets no help, feels socially rejected, receives no help with social conflict, and feels "stupid" all day, even though he is incredibly smart and charming. I would be happy to share what they recommended at the NIH. I dont have the work up yet since the tests had not been read. Im expecting a write up on impressions and recommendations when we receive the results. I did have a 1 hour wrap up consultation with Dr. Grant and Dr. Hommer. (Both psychiatrists and incredibly kind, compassionate and brilliant!) The did not recommend IV Ig at this time as he was doing very well during our visit. (The stress of school is his biggest trigger, and he had been off for 3 full weeks....Doesnt get any better than that!) They said that IV Ig does carry risks and you only want to do it when things are extremely severe. I told them that he had been referred by our PANDAS docs at MGH, whom they respect, and they said that we should follow their recommendations. I asked, what if he flares again horrifically? Dr. Grant said, "Then you pick up the phone and call me and we'll talk!" (WOW!!!) DS had been on tons of meds that made everything far worse. We had weaned him off them all in order to do this study and I told them how much better it was. They were happy to hear that and said definitely dont go back to them. We had been told by some other docs to try Abilify if he got really bad again, but they advised us instead to talk to our doctors about trying a stimulant instead. They saw how restless he is, and how severe his ADHD like behaviors are and felt it was worth a try. They assured me that he would be better within a year or two. I told them that even though he is as well as hes been since the onset, his handwriting is still worse than its ever been, and math skills havent returned. They told me that its common and that it can take a long time for those things to come back. Overall, I got tons of reassurance that we are on the right track, have the right diagnosis, and that he WILL be WELL again!!! He wont loose anything academically. When hes ready and well he will catch up in a hearbeat. The best part of it all was that every doctor, nurse, aid, and staff member we met fell in LOVE with him and all told him what a special boy he was. This couldnt be farther from his experience in school, and sadly, even sometimes with his siblings who get fed up with the chaos all of this creates. He truly felt like a rock star, and I felt like a great mom doing everything right! (Very unlike MY "real life" as well) Im doing the best I can to keep these positive feelings and continue to see the light at the end of the tunnel. The biggest message I took home was that my job now is to keep him from becoming emotionally scarred by people in school. And if keeping him home or sending him to a private school for a few years will help, then Im full speeed ahead! More on the convo about IV Ig, they explained that the only studies thus far have been on kids in the first 6 months of onset. My child has been suffering for over a year since the inital onset and was untreated for more than 6 months. They just dont know how effective the IV Ig is in those scenarios. We came SOOOO close to getting into the IV Ig study, but at the time my son was suicidal and they didnt feel he was stable enough to come to the NIH. Our immuno has recommended IV Ig, but that was during chronic flares. Well see what happens when he gets back to school....Or better yet, get him into a more positive environment that he can thrive in....Maybe thats my best answer for now.

I think there is no standard answer. Each child responds differently. Our pandas docs at MGH have switched my kids from high dose abx to lower doses when well and upped them back when flares continually occur. It's an art. I have asked the question myself many times and the answer I am left with is when my children are symptom free for many months we will try to taper down. You will know when its right and you will also know if you've made a mistake. But most significant cases around here seem to be on abx for several years.

Yes, it does take 6 or more weeks for the Cunningham panel. She said at the pandas conference that she only has one part time person processing the tests due to funding and asked everyone to be patient. Your story does certainly sound like PANS to me. I hope others with a similar experience will chime in with some advice.

There hasn't really been any official studies on if a tonsillectomy helps a child that already has pandas. The study done has shown that it won't prevent a child from getting pandas. Our pandas ID dr said studies show there is a decline in post t and a strep infections but by the end if a four year period there are as many strep infection as before surgery. Of course for me, I was willing to take the reduction for four years knowing he would eventually outgrow this condition. My dd was cured completely after t and a but only for 6 weeks and then she flared. Now she does have little flares here and there lasting from a few hours to 10 days, but in between she is her 100% self. DS had the surgery and flared terribly for 5 weeks! But I must say now he is doing amazing ly well but still has awful adhd and mild icd, anxiety and tics. We did both surgeries for sleep apnea. It's not a given that it will help but many feel that it has helped. I am definitely on that team!

As many of you know I've been fighting to get my child more help in school but haven't gotten anywhere due to the fact that my child is very intelligent. His restlessness and inability to focus makes accessing his school program very difficult and there are 20 students in his class with one teacher. The teacher has told us he needs one on one supervision to complete any class work yet the school physchologist and principal insist he does "just fine". We are in the process of an IEP eval and I have our psychiatrist advocating for us. Our meeting is on the 22nd. In the meantime I got much insight and guidance at the NIH. I was told to consider home schooling or at least finding a smaller class size if private school if that's an option. I wanted to knows what others are doing when the current school system fails to meet the child's needs, or the child isn't able to thrive in the current setting. At the NIH, DS worked daily with the head of educational services on his homework. She adored him and they made a great connection. She told me at the end of the week that he really needs a one to one aide. Even in a private setting with her professional instruction he needed to be refocused and reassured every 10 seconds. She said that he is very smart but his disability is so great that he can not possibly access a program in an conventional setting without a great amount if constant assistance. She is writing us a letter for school that I hope helps My two avenues are making the state pay for home tutoring (MA law provides this with letter from dr) and supplementing with music lessons and our private after school club that is at our camp and old daycare. They give personalized attention and would keep the social skills going. I would add in community service and find him some way to work with animals (maybe a dog walking job) to give him some responsibility and get him outside. He adores animals. Any thoughts or words of wisdom?

My two were on Zith for 2 months. Their symptoms ramped up and we ended up switching them back to Keflex. But the docs did insist on EKG before treatment and repeated one month later. Both were fine, but we didn't use for prolonged time. DS was also on intunive at the time and I think there were indications for that as well. Blood pressure also had to be monitored.

I'm so glad to hear you have chose a longer course of abx, just in case. At least you don't have to repeat the journey of trying to figure out what has possessed your child. Please let us all know what the outcome is! This is very hopeful for all of us. We just returned from the NIH and after a prolonged meeting with Dr Swedo and Colleagues she looked into my child's eyes and made him a promise. She said she has been treating PANDAS pts for 25 years and ever single one of them had gotten better. She promised him that within a year or two he would be completely cured. How long had it been since you began initial treatment? Fingers crossed!!

We were at the NIH participating in a PANDAS study. It was the most wonderful experience and I'm so glad we went. My son was not in a flare and was able to participated in all of the procedures, and even enjoy himself. This particular study was about sleep in PANDAS patients, and was limited to 15 patients. DS was number 14 and the final patient has already been selected. Basically DS had all of the same tests and procedures that the IVIG study participants had done, with the exception of the IVIG of course, and the addition of the sleep study. My maternal blood was also taken, with my consent, for use in future studies. I asked if they wanted me to spread the word, or keep it under my hat, since there isnt any recruitment calls out there. They said that the sleep study was complete, but there is what they are calling the Natural History study that is PANDAS specific. They are also including autism and other neuropsychiatric disorders within this study, but they are obviously very interested in PANDAS. If anyone is interested you should contact Swedo office. You should know that anyone who has had IV Ig may be excluded, from what I understand. The study has a very high number of patients that it can accommodate (unlimited if you consider the number of patients that actually know they have it!) you should also know that the cost of travel and meals are not covered, and no compensation is available. We had the most positive experience and my son was treated like a rock star and never wanted to go home. We were able to stay at the Children's Inn Which was a little like being in Disney. Words can not describe how special, loved, and accepted this made my child feel. We had hours of time with all of the doctors involved and I got to ask them questions and get their opinions on everything. The results of our particular tests will be mailed to us in a week or so and I look forward to learning even more. At the end of our intake conference, dr. Swedo herself told me my son has PANDAS Plus. I'm not sure what the plus meant and I forgot to ask, but I should be hearing from them soon as my question was forwarded to her. My son has had autoimmune radiated GI problems and I'm guessing she was referring to the bigger picture of his immune system. It was a fantastic experience for him, and for that alone it was all worthwhile. For me, it was amazing to speak with these doctors personally, Get validation that my child has PANDAS ( no surprise but still great to hear) and get their personal recommendations for my child's treatment. Feel free to ask any questions.

Agreed! Definitely a trigger

A private school does not "have to" accommodate your child, but a good private school will want your child to succeed and keep your tuition dollars if at all possible and cost effective for them. I would recommend going in a very politely and kindly ask for modifications and suggestions on how to help your child so that he may remain in their school system. They may already have specific policies in place for children with special needs. Other schools have particular standards, and as a private institution, have the right to decide if a student is a good fit for their program. I would also get the nueropsych eval, but I wouldnt share it with the school until I knew their take on the results. For example, if your school is not looking to serve children with certain deficits or disabilities, I would keep that info private for now until you see how treatment and intervention goes. If they are on board with helping in any way, I would share the info and allow it to guide them in creating new solutions to help your child. I would be fearful that if you presented them with a professional eval that showed XYZ that they may use it as grounds for dismissal. Again, private schools are not required to accommodate or modify, but many of them will and do. You just have to get to know your school.

I would think that perhaps he is one of those that is enjoying a miraculous recovery! My dd had no flares after and was in fact 100% for 5 full weeks! Now she has a few flares here and there but they are so much more manageable and shorter in duration. DS flare started about 4 days after and lasted 4 weeks. Every kid is different. My advice would be, do t worry about a flare that is t here now. Enjoy every moment of your your child's good days. I hope it lasts!!

If the doc doesn't accept your insurance , unfortunately your company doesn't have to pay. But you can and should call and ask about appealing the decision. Sometimes if you have tried everyone in network and they have not met your needs you can get reimbursement if you work hard at it and are lucky. I would advise that you don't mention PANDAS. Most insurance cos will not cover any out of newborn visits for disorders that are not yet official diagnosis. I would say Something along the lines of post infectious I cephalopod or brain dysfunction not other specified.

That is so amazing !!! My kids were in such horrendous pain for two weeks. I'm thrilled for you!! I hope it continues to be very easy and his recovery is quick. If there is to be a tough time at all, it's between days 5-8 as that's when the scabs seperate from the throat tissue. Congrats on the smooth surgery!

I'm so sorry you had that awful experience. In glad he wrote for an MRI. You want to make sure there is t something mechanical causing those headaches. A headache for 45 days is NOT normal and you should try a different doctor if you don't get anything out of the one you just saw. Have you checked all your child's meds for possible side effects? Switching abx is t a bad idea as so done else mentioned. My DS has been having headaches and we am have found its a common side effect for Prevacid that he started A few weeks ago. Dies he have any nausea or sensitivity to light? Stomach pains?

I hope he recovers quickly!! Thanks for the update. I was just thinking about you!

We will be thinking of you and sending good thoughts and prayers your way!

I truly hope that things turn around very soon for your son. You have both been through so much and deserve healing and soon! Sorry I don't have any words if wisdom either but wishing you the best!

Thanks for all your info Cleo. The family study you are referring to is not up and running yet. This is a natural history study and I spoke directly with Swedos nurse practitioner and they are doing specific tests on pandas patients. I will be giving my maternal blood to be stored for later use, but again, this is not the family study that is posted on the clinical trial website. Thank you again for all your insight. I'm hoping that the testing we had done last year will serve as a good baseline to show how he is performing now. I just have no idea how it will play out.