JoyBop

It sounds like you had a very productive meeting and that she will help where she can. However, I would be very put off by a psychiatrist saying that OCD isnt a bad thing to have and simplifying down to a single, mild manifestation. Perhaps she was trying to make you feel better, but many families and lives have been shattered by OCD, and there are many, many manifestations. If she is willing to call your doctor and recommend bloodwork, that is very very helpful. Is your child on abx yet? FWIW, we went to a psychiatrist when life became so unbearable that DS was suicidal. Although this psychiatrist had only seen one other case of PANDAS, she insisted we go for a strep test and BINGO!!! She does not know a lot about PANDAS herself but has guided and supported us through the system. She even gave DS CBT personally when we kept loosing our therapists for reasons that were out of our control. CBT IS very effective on young children. I have seen it make a difference even in my 4yo, who was 3 at the time she received it. I will admit its extremely hard to find a therapist adept at administering it to young children, but please dont believe that its only for adolescents. In any case, I would use her as a stepping stone until you get to the PANDAS specialists and go from there. We see a PANDAS psychiatrist that I have to travel 2 hours to see, and also see our local one who doesnt know PANDAS but supports us and follows PANDAS docs recommendations. DS is on a lot of meds to help with symptoms even though we know they are just a crutch and not a cure. We also see PANDAS Ent, infectious disease and immunology. KEep up the great work!

DS had his T&A on Halloween. We are praying it is the same miracle cure it was for DD who had hers a little over 2 months ago. We got home from the hospital last night. The behavior is great but the fears still seem to be there. Im going to give it time as I realize some things will be slow to release due to habits. DD was only 4 and she let it all go. DS is 8 and has had plenty more time to mentally obsess over things. Question..Does anyone know the specific studies that negate tonsillectomy as a treatment for PANDAS? The only one I seem to find is that children who have already had the surgery prior to PANDAS onset are just as likely to develop PANDAS as those who have not. There was not enough data to say one war or another the outcome of an active PANDAS flare had any effect after removal on tonsils.

This is such miraculous news? Question...Was he on the abx before going to the hospital, and then it was stopped for two days, and then it was started again. Did I get that right? I cant help but wonder if there was something to that? Either way, it is the most wonderful news and I am so happy happy happy for you!

In sorry you are here as well but very impressed you made the connection so quickly. Many of us here wish we had. It certainly does sound like a classic case Of overnight onset of OCD. Many of the kids you will read about on this forum will also have flare from any number of circumstances that heighten the immune system. I have two kids with PANDAS. they were both also diagnosed with SPD. my daughter developed vocal tics 5 days after the flu shot last year. She already had severe anxiety and OCD but was only 3 at the time and we hadn't put it all together yet. She is cured now after having her tonsils and adenoids removed due to obstructive sleep apnea. Since her remission her SPD is 100% Gone and I am in awe. It makes me wonder how long she had pandas before. My son had overnight onset if sever anxieties and OCD but the OCD is purely obsessional. We had a psychiatrist ask us to take him for a strep test even though he wasn't sick. Sure enough, he had a raging strep infection. We took the rest of the family in for swabs and dd also had strep. That was when we realized her behavioral issues (which were so out of control we were having all kinds of evaluations done). I will add my own opinion that I believe there are a subset if these kids that begin gradually with these symptoms and are able to hide them well. Then With each offense of the immune system things get worse until the straw that breaks the camels back. That's when the overnight onset kicks in, at least for my kids. My son had his first strep infection when he was 6. Looking back that's when He developed a few mild anxieties and obsessive thoughts. They didn't have a big impact on his life at that time but I believe it all got worse from there. Even though we know for sure pandas is to blame, and we have seen several if the greatest docs that have given us outstanding care, not one of them will write in their notes that its a clear case if pandas. It will say "likely" or "could certainly meet criteria for pandas". I'm not sure if everyone experiences this or if docs have to say this bc its either controversial or such a difficult clinical diagnosis to make. I mention this because you may experience the same thing and not get the definitive diagnosis you are seeking. Either way I have no doubt you will seek out every possible treatment a available. Also note that my two kids both had strep with No symptoms whatsoever. Their titres were sky high and are not carriers for strep. My dd also had mycoplasma with no symptoms so keep an open mind. Welcome to the forum!

My dd was completely cured from her t and a although we didn't realize it at first. She had a horrible time sleeping as well for up to four weeks. I attributed this to terrible pain and dryness in the throat which can be so painful. I found using a humidifier at night did help things a bit. Her tonsils were cultured and fhere was evidence of strep as well as about 5 other bacteria but not in high numbers. No influenza. Dd has her vocal tics. If anything they have probably gotten worse but don't bother her In The least. She does a throat clearing every 3 seconds when reading, watching tv, or zoning out. I didn't realize at first that the other behaviors had vanished bc she was so beside herself in pain and dreaded sleep because of the pain. It's been since aug 29 and she still sometimes wakes with a sore throat. A little yogurt smoothie helps tremendously in the morning. I would give it a bit more time and try to find ways to make sleep more comfy with both pain meds if you are using them and give a humidifier a try. If she wakes at night give a sip if water to get things wet again. Hang in there!!! My day is having his out on Halloween. Fingers crossed we have as much success with him.

Post infectious encephalitis can take many shapes and forms. There are two different types, primary and secondary. Any part of the brain, or the whole brain can swell in encephalitis. PANDAS seems to be a form of secondary encephalitis as it comes on up to 3 weeks after an infection, as opposed to the original infection directly attacking the brain. Straightforward encephalitis can cause neuropsychiatric symptoms but usually comes on abruptly with fever, headache, seizures, and other neurologic symptoms. Im sure that once the PANDAS battle is duked out it will be considered a post infectious encephalitis. But as for now, not too many of our kiddos will be receiving CT scans, lumbar puncture, or other testing to prove it one way or another, unless things are so severe that they must be hospitalized. It seems that most of the PANDAS kids have a low grade, chronic form of specific encephalitis as it only affects the basal ganglia. I can'y wait for the NIH studies to be released. Its our best hope for a DSM diagnosis and coverage for treatment.

Have you looking into what the state laws are for public schools in NY? In MA there are awesome laws, even dictating that private schools make certain offerings. Im sure you could look into the public program and give it a try. In MA a doctor can write a letter fill out forms for a child that is not able to attend school for medical reasons for just 14 days or more out of the entire school year. The principal must send a tutor to teach the child without delay. There is no cap on the hours provided but can not equal or exceed number of hours a child would be in school unless the IEP specifically demanded it. You do not have to be on an IEP to utilize this rule. Normally I hate all the rules in our state, but I love this one! I may use it for ds if things dont improve soon. Although he has stated that he would not want to stay at home, but wishes he could be in a school with only 5-8 students per class. I wish we could afford to send him to one, but we can not. Explore your options with the public school and see what they have to offer.Good luck!!

I am so sorry that things have gotten so bad. I hope that your son gets the best treatment and care in the hospital and that you are able to get to the cause of it. Can;t you just go in with the admitting papers and check in at registration? Better yet, have your peds office call ahead and get things going. I will be thinking of you!!!! Good luck!!

I dont have any info on those specific meds but my ds is on a bunch of meds to try to help get him through the hump. Some have helped slightly, some have made a mess. But I still can not give up and watch my son suffer and be miserable so I am going to continue to try until I find something that helps or he is cured. I know meds should not be taken lightly, and it breaks my heart to see my 8yo take 14 pills a day, but thats where we're at. My ds takes Intunive, Zoloft, Clonidine, and was just prescribed Abilify. We havent started it yet, as Im waiting to see if his t and a is a go. IF so, I will wait until after to see if its still needed.

Our doctor explained that encephalitis is when the brain swells but it happens all over and not in just one small calculated area. It could certainly swell anywhere, but LANDAS is unique in that the nasal ganglia is targeted. I think PANDAS could be one subtype of autoimmune encephalitis but I'm not sure it's classified that way since its not been proven one way or another. I would love to hear what anyone else knows about this relationship.

qannie I think you just nailed it!! Thank you, I think that is the perfect way to explain in. When my kid is well he has tough skin and doesn't have a care in the world, almost to a fault. When he's in a flare the smallest insult or stress causes him to fall apart. Thanks for pitting into perspective. Sometimes you can't see what's right in front of you.

It is a serious disorder that shouldn't be overlooked. I believe you measure the arm spam of the arms from fingertip to fingertip. If that measurement is larger than the child's height then you need to be evaluated. They are usually quite long and talk kids. That was a really good pick up on the OTs part as many people, even doctors don't think of it often.

I would tend to think that autoimmune encephalitis would be more embraced by doctors since there is easily hard evidence for it. The MRI showing inflammation and the elevated blood tests. Pandas is so much more abstract and even though we have the moleculera labs they are still not fully accepted since pandas hasn't been proven yet. Encephalitis has been around for ages and any doc knows that when the immune system turns on itself it can attack any part of the body. So insurance coverage would be better, but I think the problem is that doctors aren't looking for this type of diagnosis. I certainly hope that research is done so that all of this can come out of the closet and we can start helping these families.

We had a pandas specialist do our t and a based on sleep apnea. Our insurance only covers us for either obstructive apnea or documented positive cultures for strep equaling 6 or more per year. It may be more if an insurance issue rather than a surgeons will to do the surgery. Every insurance and state is different. We could have had her surgery done locally but I chose to drive 2.5 hrs to go to someone who knows pandas. The hospital policy was that anyone who lives farther than an hour away stats over night. I was so glad we did bc that first night is just awful. It was such a relief to have IV fluids for that first 24 hours as they don't like to swallow anything bc its do painful. Have you asked if you can spend the night? There is a risk of bleeding the first 24 hours which is why they might keep you. Them after discharge we were told not to leave our home area for two full weeks. It's not a minor surgery although it is somewhat routine. It's not without its risks which is why surgeons are so judicious about who they operate on ( not who per se but why)

How interesting. Thanks everyone for that insight! My kiddo has never had any environmental allergies and no sign of symptoms other than behavioral. It all started on the third day of school.

In just curious...can stress be a trigger for a PANDAS flare? Everything was going fairly well until the start of school. If course he could be reacting to someone with strep in school but just wondering if others have found flares related to stress.

PowWow does the autoimmune encephalitis cause the same symptoms? What were the antibodies to? Just curious, what kinds of tests revealed that info and was it resolved?

I hope it works out well. Will your insurance cover it? I think its side to rule other things out. But pandas can look like so many other things. I wonder what an MRI would show. It sounds like its definitely worth a try.

Im so sorry to hear that. Does your child get worsened tics when under stress? ITs a terribly stressful and miserable recovery. My dd had vocal tics prior to t and A last month. They went away temporarily but came back. They are not at all bothersome and all of her PANDAS symptoms are gone!!! She was a nightmare before and now she is the sweetest most charming, engaging little girl, I am pinching myself!! I do hope the tics settle down.

DD4 just had hers out Aug 29 and I can say she is in 100% remission since! Granted, it hasnt been that long but WOW she is a different child all together. They cant even believe the difference in her school. The pain was horrific and it was like having a newborn baby giving meds around the clock and screaming at night. It did take a whole two weeks to recover. TOTALLY worth it in our case. Our PANDAS ENT was thrilled for us when I told him he cured her. He said, you know I didnt promise you that, but Im so glad it worked! He said hes seen some kids resolve PANDAS, some get better and then go right back, and some get worse. As we all know, insurance wont cover T and A for PANDAS. DD had huge tonsils so the Dr. ordered a sleep study in hopes that those huge tonsils were causing sleep apnea. I was certain she didnt as she was a very quiet sleeper. Low and behold, she had sleep hypopnea where she goes into hyperventilation 9 times an hour. Definitely met criteria for T and A. Our insurance will only cover T and A with 6 strep infection in one year. We can show that bc our kiddos have been on abx which can yield false negative results. The titres are not accepted as diagnosis as far as insurance coverage is concerned, but every state and policy is unique so definitely explore. My DS8 has it BAD and Im desperate to take his little tiny tonsils out....What are the chances? Ill let you know, we had the same sleep study done on him this past Sunday. Praying for Apnea! I would do the surgery in a second for him.

So sorry!!! Tell me what they offer at the MAyo Clinic? Would it be just a psych eval? Or do they do something with PANDAS?

Sure, please post those resources if you can. I totally agree that they don't have to understand the pandas, or won't, but they actually want medical documentation. In fact I could not even get a meeting with the psychologist without a very harsh letter citron my doctors. So all our medical documentation says pandas all over it and we are explaining how a pandas patient might present differently than your average OCD and anxiety case. I lived the article for school nurses on the pandas network but just wish it didn't make the resolution look so simple and final. While its great for nurses at school to become aware of this condition its far from being over after 10 days of pennacillin. I would have loved to provide them with a similar article that was a bit more realistic.

I was prescribed topomax for headaches but could not tolerate the med for a minute. It made me so sick and exhausted I could not function. I was in the lowest dose and felt very drugged and loopy. Everyone reacts differently to medications. Good luck to you!!

We are FINALLY having our school meeting tomorrow to discuss ways our DS can be helped. Does anyone have any good articles to give to the school that particularly address the condition as one that can be chronic? I've seen the one in the pandas network that's great but it makes it sound like you just give them 10 days if penicillin and presto, they are cured. I love the article otherwise but it won't help us as DS is suffering terribly despite all of the abx ect. Any tips as we go in for our meeting?

That is so great!!! Thanks for giving us the good news !!!!