7upMom

I only wish I could help you on this one, I still don't even know exactly all the right questions to ask- and you may find ( hopefully not though) that if you see more than one doctor they all have different thoughts, theories, treatments etc. That was very confusing to us, our very trusted pediatrician that we had for over 10 years we found out just wasn't up to speed ( even though we did trust what he was saying at first) then our trusted psych ( who is truly a great psych - well he wasn't correct either) our behav therapist ( well he didn't have a clue and even said such - sounds weird but we did appreciate the honesty) our immune dr ( yeah just posted about him and he is a specialist from a renown childrens hospital so you'd think he would know) We feel like we have wasted years trying to go to different doctors and trusting/trying different things. I know for sure if I were in your shoes- I would ask for a blood test to know his titer numbers - don't base everything off that is what I've learned from others but its good to know. I am just finally starting to understand some of the abbreviations on here and have looked up so many of the words with the dictionary - I feel really lost still when I read some of the posts, but its good to push through that and just keep educating yourself about it!! I wouldn't just Leave it as is though, be prepared for the "next step" just in case this one doesn't continue to pan out- thats the biggest thing I have learned- it will save your child a lot instead of treading water!

How did your appt go? Is your doctor going to work with Dr K on a treatment plan? I so agree Thank GOD for the drs that are willing to step outside a Normal protocol to not necc "experiment" but think outside the box and be willing to try something different as if it was their child!

They did a sleep study on our son , to check for Apnea. He has enlarged tonsils ( always has) but the sleep dr took a look and said his airway was still clear. Our son sleeps A LOT, he takes a low dose sleeping med to get to sleep at night - crashes by 8:30 pm and then wakes at 8 am, some days naps for 3-4 hours and he is 9- due to this reason she ordered the sleep study anyway just to be sure. He came out clear no Apnea. His psych told us that there are times when he has seen an underlying NOS mood disorder that if a child has apnea and tonsils removed, this will help clear that mood disorder right up.

Instead of Pm'ing and calling a bunch of parents , who have been so caring and supportive. Thought we would just send a full post here- it may seem small and insignificant, but to us it is tremendous! We made that appt with Dr. K, we go in two weeks from Monday! That couldn't come soon enough quite honestly. I want to yell it from the rooftops cause it seems like there is hope, I want to breakdown and cry cause its just so emotional, I want to scream at the dr's that said he has what he has and now it will just be a long hard struggle for him (GGGGGRRR) Heard this just on Monday from the immuno PANDAS diagnosing dr- they were doing his 3 month titer recheck ( of course its been 5 days and no results back until next week on those - that takes WAY too long) but we were told low dose 250mg penicillin was the only proven protocol they would follow treating PANDAS. As far as the tic disorder and severe OCD- they said we feel sorry for your child but there's nothing we can do, we treat the titers- hope they come down and the rest well we are going to send you to an ocd/tic specialist he has what he has at this point. Begged if they could even consider changing the antibiotic or upping it- NOPE not their protocol - they claim they go off the american academy of pediatric studies for PANDAS ( interesting- I don't find this to be consistent with what they are claiming) Has what he has , hhmmm at 9 years old he tics so bad his joints pop in and out, his ocd ( which was overnight onset last month) is so that he breathes a certain way, walks a certain way, moves his arms a certain way, doesn't like walls behind him, etc, etc, etc. He will skip sideways 4 times, hop forward 3, does something else infront of the car door ( haven't dist that yet) before he will get into the car. They are sorry that he will stand outside in the snow while barefoot with no coat because his brain tells him to, they are sorry that he begs to die at 9 because he doesn't want to live like this, they are sorry that he rages so bad from trying to hold in tics and compulsions at school and public settings that we have had to restrain him from harming himself, that he physically hurts - that he is just tired from all the movement he just wants to sleep all the time. They are JUST sorry! Their reasoning for not trying something different - they don't experiment with kids they only follow what has been "proven" to work. Where is their proof of a low dose penicillin? working on this?? Enough venting about that, because its actually a good post- we ARE going to prove what works- we ARE going to get him better, we ARE going to go see Dr. K!!!!!!!!!!!! ( : Chel

Welcome here, and you will find good support and answers! It has helped us on a path and that is a Godsend! We also have a big family here, two sets of twins (6 and 4) under our PANDAS 9 yr old, the stress of trying to research - stay informed, stay in tune, take care of your PANDAS child and all the others in the family is HUGE and to deal with the guilt of it all I just continually remind myself- "I am doing my best" as long as you can say that, set the guilt aside and know you are on the right path here.

When my son was 2 he would throw HUGE screaming fits when we drove past cornfields ( we live in Iowa so they were hard to avoid) At home when he did throw temper tantrums ( which was constantly) he would bang his head on the cupboards, the floor, the table- it wasn't just "normal" temper tantrums, it was unlike anything I had ever dealt with or seen. He would spit all over himself, there was absolutely no reasoning with him. We thought he was just a very emotional child and had hit a seriously bad terrible two stage. Well those symptoms have just never went away. He also slept a lot, but still always seemed so tired and looked very wornout. He still is like that ( he is 9 now) When he was 6 they diagnosed him with rheumatic fever and put him on longterm penicillin- it didn't do a whole lot ( looking back I think it just kept everything from getting worse but didn't 'resolve' anything) at 8 his pediatrician thought he had been on penicllin long enough and removed him from it, within 6 months he developed fullblown tic disorder and then last month full blown ocd. He now has been diagnosed with PANDAS with the sudden onset of everything and his titers were 1360 ( I don't think he ever complained of a sore throat and it was strep- so at that time his titers were surprising to us). He is back on the penicillin (4 mths now) and every month he gets worse. I have learned so much from just 2 weeks of reading the posts here. I know that not all the PANDAS cases are the same- but based on my longterm battle with this- I would be leary of letting them remove your son from antibiotics and do the " titers are in check" lets see approach. You are so lucky to have a pediatrician that stays up on this though- that is a huge positive!!!!!!!!!

No I have BCBS Hes covered under specific immune defiency Before I get my own personal hopes up reading your post, I am going to say a short prayer ( ok done) that you have BC/BS of Illinois cause thats what we have and I would love to hear that they covered it????????? Whether it is or not though I am very happy for your family!!!!!!!!!!

That is really good to know!

I am hoping he will, I just don't think the private school thing is helping him the way I was hoping for. I got the feeling they felt I was just "full of it" in a sense. When I brought up the therapist wanting to know if they would be willing to implement letting him keyboard instead of writing they told me that he actually needed to just practice writing more. I tried to explain how no amount of practicing was going to help him write better or make his hands not cramp, they just couldn't wrap their heads around what I was saying. I can just see it being a battle. If I had to homeschool , I would but its def not my first choice only due to having smaller munchkins that are twins still at home yet. I heard that they have advocates that will come to the school and help advocate the IEP for your child, so the Parental emotions don't overtake the situation??? I cannot even remember where I read this at, it was awhile ago, have you ever heard of that - or is that just a standard part of the IEP process?

LOL, at this rate with the snowdays, school will be going all summer long!!! Thanks so much for the info you guys! It is so great to meet such caring people that just truly "get it". Deann you are just awesome, I prob bawled ( a happy relief cry for 10 min after I hung up) I think I've said it before, but you all will prob just get sick of the millions of questions I have , feel like I'm in that honeymooner phase of just trying to load my brain up with info and so emotional still over how darn good it feels to 1)get knowledgable answers and 2) know what your saying makes sense to the other person. Dawn- Also, I'm interested to know how Khosr ( that is so weird cause that is our psych also!!!) felt about you going to Dr K- def we need to talk! That also is the size of our school district, but I have heard that they just don't like 504's even, let alone IEP's- just don't want to fight with any of them- whats the code when trying to deal with the school smile and nice, nice, nice but firm ( man that can be hard to stay nice sometimes though when you are so frustrated with them lol)

The math thing is so interesting, my son also was very advanced in math- he went from being in gifted in talented one year to remedial help 6 months later.

My (personal) general rule is you want to avoid anything that can cause Tardive Dyskinesia (which includes Abilify). Other people may not follow that rule. However, TD is essentially like another form of TS, so it sure would suck to have TS and then get TD on top of it. There is no cure for TD. Sometimes if they detect it early enough and you stop the drug it will go away, but sometimes not. I guess if the tics were like extremely bad then I might consider an atypical-neuroleptic (one of the classes of drugs that cause TD), but only if I had tried Clonidine, Tenex, Topamax and marijuana first and they didn't work. Oh wait, and I believe there is a class of drug called "calcium antagonists" that sometimes also work on tics but don't cause TD. They have other potentially bad side effects, like cardiac arrest or something... but hey, the neuroleptics can cause TD and sudden death so I think I'd take my chances with cardiac failure over TD and sudden death. How do they diagnose the difference between TS and TD?

These were good suggestions - I think I will def take it to his drs and try to get them all on board also for that added help with it. Just the decision of what to do about the schooling alone seems like a lengthy thing. I am curious to know if the majority of PANDAS parents do public school, private school or home school???

WOW that is great then/ thank you so much for that info, that will save me a ton of time thinking I need to get him separately diagnosed then!! I need to do a lot of research yet on the IEP's and how you go about even getting that set up. I am a tad worried about that process. Can you start off with a recommendation straight from your doctors office or is it on the school setting up eval's ? I don't want to switch him to the public school and then have them wait to see if he falls through the cracks before they start to get the ball rolling , I would like to have something in place upon switching him but is that just a fairytale dream of how it works?

For the purposes of an IEP he could be classified as OHI (Other Health Impaired). That classification is just a qualifier for services. The actual services he receives should be based soley on what his individual needs are. Would PANDAS be classified as OHI ? I know that a tic disorder is but they placed tic disorder into PANDAS diagnosis and just not sure if they would consider PANDAS to be OHI

Have a question about sons diagnosis but first I prob should introduce myself since I'm new. Been reading posts for a couple days and such great info here from other mom's. It is sad but yet ssooo very comforting to hear such familiarity in what we felt was just "our" world that no one could possibly understand- unf feels good to be wrong about that cause it seems everyone here not only understands but also is very knowledgable/helpful as well! My 9 y/o son started showing signs at 18 mths- 2 years old looking back, of course at the time, just thought he had a very bad temper. Since then the last 7 years has just been uuummmm- chaotic? idk if that even comes close to describing it but I am sure you all know. He was diagnosed with rheumatic fever ( even though we never saw a strep infection in him) at just turning 6 and placed on long term penicillin by Blanks in Des Moines, we've still always struggled with ups and downs in behavior ( still not knowing to relate the behavior to anything other than possibly mental health) and then when he was almost 8 his pediatrician removed him from the penicillin stating that was long enough for him to be on it and it shouldn't be an issue anymore. Within 6 months he began tic'ing and developed ocd symptoms. For months I was told it was due to an allergic reaction to his meds but after months of a cogentin and no change finally they sent us on to Blanks Childrens Hosp again and there we met with an immuno specialist, Dr Elliott who did a bloodworkup and 3 months ago he was diagnosed with PANDAS. He is taking penicillin but still regressing, we have our 3 month checkup in two weeks and I am armed this time with knowledge now to ask better questions and get more info!!! I think if I am not comfortable in anyway after that then we will be making an appt with Dr K in Illinois!! He has always been such a smart kid- and I know you PANDAS mom's know thats not to brag and you understand how smart these kids are. He has regressed to the point SO far of hating math- the numbers stick in his head, hating writing- he said it is hard to make the tics stop in his fingers for that long and then it makes his fingers cramp making the tics stop to write. He also feels compelled to count his tics, at school he feels like there is a face in the wall that will come out behind him, he has separation anxiety( he has missed a LOT of school due to this), as far as behavior in school they see no issues ( its like he saves it all up for home which I think I would prefer but it makes it really hard to explain to the teachers when he is inpatient or explaining why he misses so much school or why homework wasn't done and they should excuse him- they are just surprised and astounded and think its a "disclipline ,behavior " issue at home. I have given them information to help explain, but it seems to make it worse. They know he falls asleep in school at times ( he has serious sleep issues) but thats really about it. His teacher tells me I just need to teach him better coping strategies at home ggggrrrrrr- she should only live a week in my home then she'd understand more. Anyway-my question though is this- He has been "officially" diagnosed with tic disorder/ocd derived from PANDAS and NOS/mood disoder. Currently he is going to a private school but I do not feel that is working because they don't have to follow any protocol with him and I pay good money for them to refuse to give him the help he needs- not smart on our behalf! His therapist is trying to push for a keyboard but the private school says no- not fair to the other kids. ugh so I am thinking about the public school its not big where we are in Iowa and would like to get an IEP. Since PANDAS is not in any category of a diagnosis and they are telling me tic disorder/ocd from PANDAS do I need to have the diagnosis separated??? Gosh I hope that makes sense- I know what I'm thinking in my head but am having a hard time having it make sense?? and my husband lol is telling me remember if they want to read a book- they'll go to the library lol. Thank you Chel