rockytop

my daughter also took Mepron for many months for babesia (WA-1) and had lyme.We do not go to dr jones- but see a WONDERFUL LLMD here in northern VA. If you ever want to chat- PM me. My daughter is now 12. No IVIG yet, but i am hoping soon- I think the LLMD told me that timing of antibiotics and IVIG was important, but since my daughter refuses all medicines ( and I mean REFUSES!!) neither is an issue right now. what is Enula or nutramedix?

that would be interesting if the taurine thing is correct- my 1st dd was only taurine and had been for many months at the time of her draw (nov09) thanks for responding peglem and susan!

2 daughters with PANDAS-- the first one affected was not breastfed, the second was exclusively for 7 months and much longer supplementing the breastfeeding thing crossed my mind many times-- until my second daughter was afflicted with this mess !

I just got back the CamK score for my 2nd PANDAS kid- it is was 146. My other affected child- who at her best is still much worse than #2 her CamK score was only 117. I am wondering if there is any reliable info on other meds that may affect the cunningham tests? I assume prednisone would affect something, somewhere- but what about NSAID's or antibiotics, or supplements? Anyone know about any psych drugs that would affect the tests? I do not know why I am worried about it- it is what it is and in reality it does not matter- but I am relieved to have my second affected child a much clearer case- + strep culture, high titers and now increased CamK. My first child had NONE of the above, but 2 elevated levels on the antibodies. she was being treated in mega amounts of supplements, herbs, homeopathy, anitbiotics and who knows what else for lyme at the time of the draw- not to mention abilify, and clomipramine. Just wondering if there is any direct info somewhere on this. YOU ALL ARE THE BEST!~!

I would concur with dcmom about the longer steroid course being a good idea. I know not every doc does it that way. we did not see improvement until day 10 of steroids- but was it due to 10 days of med or 10 days of beginning to heal- who knows?! I am only at day #8 with my second child affected by this mess!

Nancy can you elaborate- or tell me where to go research myself- on the dopamine levels? I was interested as I read your post. I think our daughter's are very similarly affected by PANDAS and we tried mulitple SSRI's with disastrous results. Risperdal is the only thing that worked and did not cause SEVERE problems. her cunningham test results included very increased lysoganglioside and dopamine 1 antibodies. I desperately want off the risperdal, however it seem sto work. I just woudl love to understand more of how it works. Emily

My 12 yo daughter (145 lbs- thank you, risperdal!) did 60 mg x 7d, 40 x 7d, 20 x 7d, 10 x 7d my 11 yo (125 lbs) is just starting week 2 of same schedule. I am wondering if 250mg zithromax is enough for these weights? Colleenrn-- are you one of the multiple PANDAS kids people?

COUNT ME IN!! and hopefully my husband, too.I cannot wait to meet all of you-- especially T.mom (my pandas angel and hand-holder!) and Eileen, too!! Emily

We have Cigna HMO- but they reimburse quite nicely for most visits at Dr L- not the first visit so much- as it is quite a bit more (understandably) I am in NVA, if you want to PM me- I am not so great at responding to the forum- I have 2 children with pandas.. maybe I can help you somehow. (or at least tell you what NOT to do:) I have been blessed by some amazing help here! Emily

TWO THINGS: 1. my 12 dd is on Risperdal- I know lots of people have had trouble with this med, but for us it has been a lifesaver- literally. She has been on this since March- it is a liquid that mixes easily- so she is still unaware of it. She was violent, psychotic and this med has made a world of difference to the point where she willingingly took the prednisone and zithromax that are bringing my child back form ######. as far as not particpating in the OCD< my daughter's psych who has been with us since onset has always said that since she is so severely affected, we just need to alleviate all stress for her. I do wonder if that has been a self-defeating tatic at times. Essentially nothing is expected of her and unless she might burn the house or permanently injure someone or herself- she does it- or DID it-- she is alot better now! 2. Lynn, thanks for sharing about your son. I am sorry to hear about it. We, too, spent almost two years trying to figure out what happened to my girl (including ER visits, docs who stare in shock and fighting inpatient recommendations)- and most of it because docs do not believe in PANDAS and especially if you are neg for strep! She is so uncooperative now with any tx, meds or even Dr's visits because of the time that was torturous to her- hence the need for liquid risperdal! We have been through a disaster with my 12 yo (and alot of it because she has always been negative for strep) About three weeks ago- my 11 yo daughter started with typical confessing, counting, arranging type OCD. Well, THANK THE LORD (truly) I took her in to our family doc (who probably thinks I am slightly nutty:) and she had a positive strep test! Antibiotics for her and we are seeeing improvement for her also. Nobody would ever have been able to put my two girls in the same diagnostic category-- they are so markedly different in their presentation. this is a wild ride, for sure

What is the story of daughter #1...I'm new here, so am not familiar with everyone's story. well, I guess it is not really a "story", but she has been very severely affected, non-functional for weeks at a time and has what I have seen termed "exorcist syndrome". It is a very true description! We have spent 2 years with various psychiatry and psychology opinions and medications and she has jsut gotten worse. Thankfully, we finally made our way to Dr L and she is now on steriods and zithromax and she is remarkably better. Still very affected by OCD and tics- noticeable even to strangers!- but I am glad that she is out and around strangers for them to notice. It was not that long ago she would not leave her room. I hope you get some answers. My daughter also goes to a rheumatologist who is keen on the auto-immune aspects of PANDAS and she has suggested Enbrel as a possible treatment.

There are at least 2 of us in the DC area, more--plus a few more just outside. Keep us posted! YES, let's meet. I am in Fauquier Co- would love to meet in DC area-Fredericksburg is ok, too- I cnanot come this Satrday though unfortunatetly. Include me in any info- please PM me!

I am going to try to PM you my email- I would like info about gift and meeting in July. In case your box is still full- Tmom knows my email! I am local, too. Emily

for what it is worth- maybe nothing- yet.. I have a very severe PANDAS 12 yo dd --- HLA B27 negative. However, my 11 yo dd is having some sudden onset sensory issues and high anxiety. She DOES have some arithritis problems- no JRA diagnosis- we are hoping it resolves- she is checked by a peds rheumatologist every few months and opthamology also. she takes Mobic daily for the arithritic problem. She is COMPLETELY freaking me out with the new sensory and anxiety and separation issues. If you know my story of daughter #1 you will know why. but I digress... So my 11 yo IS HLA B27 positive. My little sister (31) has ankylosing spondylitis, my mom has crohns, her sister has RA and their mom has temporal arteritis. I have anti-phospholipid antibodies. Also- another interesting side note.. we went to Hopkins, where they were very kind and sympathetic but do not really seem to understand or believe in PANDAS. As we were leaving the psychiatrist said-"oh.. is there a history of auto-immune disease in your family?" I think I know what wheels were turning in his head!

They ordered valium 5 mg bid- we did give her 10 mg at once ( for her PICC line change) and it did not really calm her noticably. She would need to be sedated the whole time. do they ever do IV sedation for IVIG? That is what I need! We need dentist work done, too- she has 2 teeth that need to be pulled & i am praying she does not get an infection in them ..

what does that mean?? Thanks for your help!!!!! (bouncing this up)

she did a very short steroid trial and we saw a very slight improvement. I am not sure of the doctor's plan- but we see a doctor that is very well known and respected by the people on this forum. the doctor seemed very confident that they could help us- but the prerequisite of her beign calm (which she is- as long as she is doing what she wants- eating, watching tv, avoiding life) really makes things difficult. As far as holding her down for treatment- I have no problem with that- at this point she has to be carried (kicking and screaming) out of the house for anything. She has a PICC line in for her lyme disease abx (not currently being used) so we already have IV access! anyone have any ideas or know anything about children's (children's hospital here in DC) neurobehavioral unit? i do not know where or when this will be done. We were unable to get specifics from doctor as my daughter wouold not leave room when we met dr and would get very agitated when doc would talk about anything related to getting her better. UGH!!!

i know this is horrible, I have read all about this and have been dealng with a HUGE problem for 18 months- basically what it boils down to is that my 12 yo needs IVIG - but we have to get her calm enough for it. Valium did not work and it seems that risperdal does not either. I am wondering has anyone ever had a child admitted for say, "altered mental status" to get them sedated for IVIG or PLasmaphereis? Children's National medical Center (in DC) has a neurobehavioral unit- kind of a psych/medical unit- but I do not know if they are a PANDAS- friendly place- if you know what I mean! My daughter is actually not technically PANDAS (no high ASO) and was acutally diagnosed with "post-infectious encephalitis". IF these meds do not work to "calm her" any ideas? anyone had a child sick enough for PEX or IVIG but too "sick" to have it done? I have not approached this with the doc yet- I am hoping something will start working- but want to be prepared in case they do not!

I was kind thinking that Valium does not take that long... people take before the dentist like a 1/2 hour, right? The IV is not really the problem itself, actually, my child has a PICC line already- though it does terrify her even though it has been in for several months! She has been on IV abx for lyme. We are doing 10 mg bid and I am going to call Dr L today and see if we can bump it up or increase frequency. I wanted to give it time and not be pushy by calling her office- we only started this Wed- but if it is not enough meds- it is not enough, I guess. I am anxious (for lack of better word) to get this going! Thanks and any other other ideas are welcome

We just saw Dr L a few days ago and we are working to get our child (12) calm enough for IVIG. We started Valium...anyone done this? How long did it take ot work. We have seen a 50% improvement prob in anxiety, but that still does not make her able to get this yet! Just wondering if anyone else had done valium first and if it took a day or a few weeks to work. Anything anyone else tried to get kid calm enough? I am wondering about medication specifically. I read about the play kit, but my child's level of cognition is not at that point now, thanks to this problem!

I just wanted to wrtie to 7-up MOM- I have been following this for a few days- and I am so sorry for what you have gone through. My 11 yo dd sounds almost exactly like your son- she is essentially non-functional about 90% of the time due to her rages. She has never been strep positive- but thankfully I have a relentless and willing doc who is doing anything and everything (and I am not talking about our psychiatrist) She has been on multiple psych med for almost 18 months with no effect. We are considering a riluzole study at NIH & went for a consult at Johns Hopkins recently with Dr grados- he recommended she be treated as if she ahd tourettes- I was so excited to start clonidine- but she will nto take it anymore. We are starting a very low dose steriod trial and then if that goes ok a 3 week trial next week. This is our first attempt at steriods for her. She is so "atypical" as our psych says- and so severe- but sorry to say- glad to know I am not alone. Anyways- my regular psych is running out of options and your post has reinforced why we need ot keep her out of an inpatient setting. when I ask what they will do - I am told they work on her medicine and extensive therapy.. What on earth are they thinking??? If 18 months have not been enough to figure it out- how is a week or 2 inpatient going to help? and therapy--- how to you do this with a child who screams and trembles most of the day? she does have perfectly normal sweet times, by the way. has ANYONE had a helpful inpatient experience? we are not really considering it- your dreadful experience is a testiony to what you have said- we can keep our precious children safer at home