rockytop

We are looking to PEX very soon for one child (but either way- I really do believe that therapy to learn to cope is necessary for this) and now possibly at PANDAS in our 5yo I NEED a REALLY good therpist for them.. Please, any ideas? Preferably Virignia (near DC)

May not be the approach you are looking for(or maybe you already tried it??)is risperdal. I described it as if my child's brain was on fire. risperdal really helped. we gave it for over 7 months (it comes in a liquid form) and we put it in drinks, food- as one of the OCD things we deal with is refusal to take medication (after a year of very large amounts of meds and supplements for lyme and babesia.) treating those did obviously not take care of the PANDAS/PITANDS- my child even had IV anitbiotics for many months.. but I digress... we tried many other meds and had disastrous results and some had zero effect.. but risperdal- that stuff worked!

I just will add $.02 -- my child was VERY similar in description to waht you describe adn what browneyesmom is dealing with and Risperdal was literaly a GODSEND for her. Please try it. it comes in a liquid that you can hide in a drink or food if necessary we did for over 7 months! and it worked wonderfully. we still have problems (and it broguht its own problems (weight gain) but the raging, hyperactivity and others thigns decreased tremednously. It got us toa point where we coudl get her to do one month prednisone which helped SOO much. long way to go still- but give Risperdal a try maybe-- oh we did Seroquel as well & it did not help really.

Thank you so much for this excellent advice. I will do this and fax it monday morning. I will let you know how it goes!!

I requested records from my child's first psychiatry provider ( a large well known hospital affliated with the state university) I recieved 2 years worth of form letters stating date of service and medications-- each said contact office for more information. NOTHING ElSE. not even intake (first visit) form they completed. anyone have any suggestions on how to get the complete info. Psychotherapy notes are a different breed than typical medical recods- though I could argue that they did no therapy at all-- they did nothing but refill meds that did not really help and shrug their shoulders. Our state law (and the federal HIPAA) guidelines specifically protect psychotherapy notes if they could be considered a danger to individual or their family. They have told me that they would give the complete file to another physician who is treating her. But would that doctor give them to me? I have contacted an attorney & I can file a subpoena in preparation for litigation- however I do not intend ot sue the physicians and do not want to go on the offensive. Also, I am not sure that would release all records to my attorney or only the ones which answer a specific allegation. Any IDEAS? I am asking here, as maybe someone had been through this before and has success obtaining all the records from psychiatry. Thanks

I know nothing scientific on the issue- wish I did! But I can share our experience. My daughter (not PANDAS) had her tonsils out at a young age (3) and the day after she had them out she had a COMPLETE psychotic episode. I know that is what is was-- I have seen it many times in my PANDAS child! She was paranoid, ran around our yard like she was on speed, destroyed her bedroom and was screaming completely uncontrollably and inconsolably. Fast forward to now (2 years+ later) and that child has her first possible PANDAS appt in a few weeks. I mentioned her tonsillectomy to the PANDAS doc during an appt with my other affected child and the doc asked, "was she worse after the tonsillectomy?" I said, yes, how did you know? the doctor just nodded. Now she has serious seperation anxiety, SID, wetting, obsessive thoughts. I think the molecular mimicry "part" may have pre-tonsillectomy and removing those sick things just aggravated her greatly. Time has passed and strep has been in our house; one sibling is a carrier and another sibling with strep twice in less than a year. For what it is worth, my very severely affected PANDAS child had her tonsils removed and we saw no change either way. Her tonsils were sent to a special lab and were clear for lyme, mycoP and strep. She was on antibiotics (I do not remember what- it was almost 2 years ago) at the time. So to summarize, if another child had sick tonsils and/or PANDAS, and was preparing for a tonsillectomy, I would take extra antibiotics for them in a heartbeat. hope that helps a little

I have many questions, as I am anticipating this possiblity. Thank you so much.

I cannot find his web site or information-- anyone???

We actually just saw an ID doctor yesterday with my son who is a carrier (not a PANDAS sufferer)He told me that strep titers can be raised for MANY months after a strep infection and that the rises and dips in numbers are not necessarily consistent with "amount" on infection. He felt like my son should not be treated unless his throat is positive- so he suggested we have him checked at some point down the road- not yet- he is just finishing augmentin. He felt that randomly taking my kids (we have 8) in for strep tests (cultures and titers) was not practical (I agree) but he also felt like titers were not really helpful. He was not a PANDAS "nay-sayer" at least not openly- but I am not sure he really felt if it was real. So I will re-consult with our PANDAS doctor and see how they feel about it.

I am really glad to see your post- as I am wondering the same thing. My 14 yo has the same situation-- high titers but he has had positive culture (neg quick). our fam doc recommedend Infec Disease for our son. I am thinking he needs T&A- we see our Pandas Doc today actually and will verify. we he was very little he had "kissing tonsils" and were recommended to hvae them removed- but we chickened out --i do wonder if he has been carrying strep for YEARS and now I have 2 other children suffering greatly from PANDAS) I think I may have a 3rd affected as well- I am the throws of confirming that now. Should I take him every few weeks to be checked? I will try to update what the ID doc tells me in a few days. I have one question- did you have difficulty getting the t& A set up for your boys without sypmtomatic strep issues? my sons tonisls are large and pitted and I am sure brewing with something- but still-- he is never "sick" I will keep you updated and wish I had answers for you!

I do not what this is worth- but as the parent of a child treated for Lyme extensively (after a definite positive and also positive for babesia, a co-infection) and incomplete strep testing at onset of debilitating OCD (ASO only- no throat culture, no antiDNase B testing) I will ALWAYS wonder how these diseases may exacerbate (if they truly do)each other. I know my child's lyme/co-infection had to be treated- there was inexplicable fatigue, joint pains, night sweats and more- they all resolved with the wonderful treatment by a great, kind and wise LLMD (PM for information if you want) I am sure that I will rile feathers- I believe that lyme is a very REAL disease, an epidemic in my area (northern virginia)but I am afraid that some may "miss the forest for the trees"- if I may be so bold. You should check for lyme- if you have the physical symptoms, or really think you may have it (or your child)-- but I think it is IMPOSSIBLE to check for everything and I also think it is POSSIBLE that lyme (or strep or HHV or whatever) may be coincidental and not causal in role of illness in humans. I do not know if what I have poorly attempted to explain makes sense to anyone. I am so grateful we have doctors who are commiting their vast experience and knowledge to finding out what has devastated our families and stolen childhood from these kids. I am now the proud parent of 2 beautiful children with PANDAS. This horrible OCD has totally, completely disrupted our family. It may leave permanent scars in both the sufferers and their siblings. I weighed very carefully whether or not to even test for Lyme in the second. This child had a PANDAS onset post a very sick strep throat infection- about as classic as you can get. At this point, we have decided not to test. I could change my mind tomorrow. So I have hijacked this thread (sorry!) and no one asked my opinion-- so I will be quiet now. Thanks for always being there, latitudes friends! One more thing-- I would have given my right arm to be in that meeting. I bet those docs could have had a lot of right arms if only the invitaion had been extended.. Too bad.

does anyone know how long after steroids are completed is it "OK" to do the cunningham test? I have a kit for my 5yo -- this makes 3:( she had steroids in Oct for a totally unrelated reason- 10 days worth. I do not want to send the kit if the results may possibly be skewed. Her every 10-15 second throat clearing cleared during the steroids- but now grunts and punctuates many sentences with a loud last syllable- anyone know what I am talking about? she has other ocd-type behavoirs, sep anxiety, wetting, sensory issues- and they are still present- so I guess if symptoms are still there it is a good time to test? thanks as always for advice

just as an interesting (coincidental??) side note.... I believe her sister, Leonie, was a schizophrenic with rages... I read that in more than one biographical book on St Therese, I believe! Very interesting- I cannot wait to tell my girls. Glad to read this and glad to know there are so many St Therese- inovkers in latitudes-land!

Thanks to all who repsonded. I was sent the posting link I needed. we have some very efficient latitudes forum searchers here. Good night!

Thanks Chemar-- but I think it was someone else- diff dr, I thought. Weird question, I know. Specifically, if you go to a "PANDAS doc" does everyone who presents with tics or fear end up with a diagnosis of PANDAS? maybe some just have tourettes or anxiety? I not trying to start a discussion on negative strep titers or that maybe TS is all infection or immune triggered-- just looking for this info Thanks I am not doubting my children's diagnoses (I was SOOO glad to get it:) in a weird way!!)- just trying to assure a friend that her child will not be subjected to treatments that will not help if her child just has TS

I seem to remember someone who posted many months ago that a very well known and wonderful PANDAS doc felt that their child did NOT have PANDAS. I am not trying to open wounds, and I apologize in advance, if I am. If that was the case for you- would you please contact me privately? I need some information for a friend. Thanks so much.

Interestingly, at the health system here- there is a conference also in a few weeks and PANDAS is a topic. The speaker is a doctor from Rochester NY- I cannot get the brochure to load now (thank you dial-up!) but I looked him up before and he is a PANDAS believer, I think- though I had never seen his name mentioned here. you can google INOVA Mohsen Ziai Conference and upload the brochure if you are interested. I cannot figure out how to post the link here.

I guess I wanted to second (third?) the recommendation to not worry about it too much. I suppose unless you live in a state where they require very distinct measures of academic progress. I would strongly recommend you contact HSLDA about any suggestions they may have - either educating a special needs child- or if school is beyond your wildest dreams right now due to severity- about how to legally handle it. We live in virginia, a very homeschool friendly state- and too be honest, my child has done just about zero since onset (aug 2008). She went through periods where she was unable to write or read (literally)- and at those terrible tiems, that was the least of my concerns. What I find the most difficult is explaining to the others (we have 8!) why she does nothing and they are expected to tow the line. that has been HARD! but now- they are used to it and after seeing her severe suffering - they would rather be doing schoolwork, than being in her shoes. Thankfully right now my daughter just asks to go the library like twice a week and is reading like a champ. She likes documentaries and history type movies. So I call that good enough for us. She did do one lesson on Teaching Textbooks 6 (great math program, btw) but that was more than her little PANDAS brain can take. That is the same program she started 2 years ago! but I try to be thankful the fact my child is smiling every day now! you can PM me if you want.

Cassi- I cannot answer whether or not she should be admitted. I went through very similar ot you and I was so afraid that if I admitted her- I woudl NEVER get her out of that psychiatric spiral. We kept a 24/7 watch on our child and we offered her love in the moments she would accept it- she would not get that at a facility-- however- we had massive family help to get through that time- not everyone has that luxury- so I cannot judge of you what you are able to do for her. to answer about the Risperdal--- that medication really HELPED.....so much. one mom on here said to think of it as tool and it is. It helped more than I can explain here. We tried abilify for almost year and it did not help at all that we could see. Risperdal is great because it comes in a clear almost tasteless solution. you can give it covertly if you need to milk- water, lemonade, ice cream-- many vehicles work for it.. do not wait for CamK tests- get the risperdal going now! It was reocmmended by the psych and then also by our PANDAS doc. Yes our daughter gained a huge amount of weight and there are potential problems, but psychosis and sucidal ideations are worse. Start slow and pay attention. I will PM you if you want to talk more.

I do not know the history of your son- meds or anything- but I would second worried dad's comment about ativan and otehr meds.. SSRI's & ativan WERE like pouring gasoline on a fire. not until we tried risperdone was there any positive effect noted-- risperidone works on dopamine and I imagine that is my daughter's problem. she started it this spring it is was very helpful. Praying for you tonight. I have been there ( as the mom) and I know the ###### you and him are going through.

my daughter age 11 has been on your site many times and is SOOO happy to see and hear from other kids with PANDAS. THANKS for doing this! Everyone- lets get more kids on it so they can connect. I have 2 daughters with PANDAS- one is not at a point where she is able to make connections yet- but maybe someday!- but the other thrives on support. I was never one for "support groups" until PANDAS -- this website has the potential to keep our kids going- to see a light at the end of the tunnel from a kid who has been there, done that and survived (esp with IVIG) KEEP IT UP!

I had never thought to post about this but interesting to read all this. My dd 12- shouts MOM, MOM, MOM repeatedly I think she may being trying to head off her panic that ensues when she needs me FAST and I do not respond. She has so greatly improved in many things since prednisone and zithromax in June. We are at the 2 year anniversary next week of the beginning of this for her. She is now stuttering fairly frequently- this is new in the past 3 weeks, She also hums much of the time. I really think this is a symptom, not some new hobby. At her worst she had a sort of anomia (not being able to say the correct word for an object)- like white box for microwave and black thing, black thing, black thing with increasing intensity for the tv remote. The PANDAS doc saw her with this. She also could not always saw our names- she would look at us and nod in panic and not be able to say Mom or whoever she was trying to speak to. We have an appt with our PANDAS doc next week. Everyone say a little prayer that she goes- if for nothing else for the doctor and her staff to see her with clothes on (arms in sleeve holes!) and freshly showered and hair mostly brushed. Smiling is frequent these days, too.

YEEHAW!! excuse me while i cry at my computer (not the first time:) now- tears of relief, of course- the tears have not always been happy ones I am printing a copy for our docs who are supportive, but I think possibly were caught up in the previous NIH posting on PANDAS.

ok- so my first PANDAS child had no obvious strep connection-- so I have ignored all this strep stuff until my second daughter has very strep-related symptoms since 2 months ago and high CaMK. So I finally am getting all kids (we have 8) and my husband and I tested. so far 3 kids are neg (or low --less than 100) on ASO and DnaseB and throat culture. Husband and 2 kids are still out. My ASO was 77 or so, but my DNase B was 120 which is high for adult. anybody explain any significance?? and no, no dog here:)thank goodness!! once everyone's test are back, any abnormal ones will be sent to our PANDAS doc as our family doctor recommends we get her advice as he does not really know what to do with this info and our situation. thanks

keep your eyes open- i bet we will hear on the forum- but I think I heard there will be one on the east cost sometime later this fall -- i think it was after 1st or second exacerbation only- but i could have mis-heard- maybe it was first exacerbation only