Mary M

We've been seeing a psychologist who specialized in CBT with children for over 3 months. She discontinued services this week as she felt it was more detrimental to continue without any success. Citing that future success of therapy after the medical piece is resolved would depend on our dd's opinion of how the therapy went now. Everything is pretty much on hold right now.

She's 75 pounds.

She was on 1440 mg aug xr twice a day but Dr K switched her to aug 875 twice per day May 26. I asked Dr K about ibuprofen and he said it's not a long term solution but I'll start it now...something has to work. This is so awful. I'll get valerian tomorrow. Thank you all for offering help...we are so desparate at the moment.

We're at about 45 days...not much better. Hunger seems to be a big trigger for our dd, too.

Our dd12 asked us to take her to jail or the hospital tonight. She is in such extreme exacerbation. Dh and I both had the flu today so we assume our germs have sent her into a downward spiral. Our reprieve from the steroid burst literally lasted through one great night and a couple of decent moments for a day or two. The burst ended Monday. We did take her to Children's Hospital of Michigan tonight. They listened attentively, believed every word about PANDAS, reassured us that the abx she is on are the right course of action and discharged us. DD12 said she was fine when asked, her behavior was guarded, she did show some mild anger but nothing to cause them to worry. She didn't want to leave when they discharged us. She wants to be admitted to psych. Right now we are home...She is absolutely raging, throwing things, ripping things, screaming at the top of her lungs, ranting, ocd-ing, she's naked, naming rules over and over, lashing out at us...what can we do? IVIg was supposed to be June 14-15 or 16 but when I spoke to Diana at Dr K's he was already booked so she said last week of June--still don't have an exact date, though. Appt with neuro here in Detroit in a week or so mostly because I think we need a local specialist beyond our ped. The rage is so intense...what can we do? She's angry that no one is seemingly helping her...she has a right to feel that way. She's angry she has a disease that's making everything so hard...she has a right to feel that way, too. I know there are no answers....just needed to say it to someone who would care...

Good news...such wonderful news...and treatments, even better news. Now where does one get a pig whipworm and then how does it get into the gut? Eeewww....but I'm for whatever works!

What a story...terrifying really...hoping for the best outcomes for all of you. I can't imagine living with this with more than one child exacerbating at a time...one is all encompassing.

Is it important to know the difference? Maybe. Dr. Cunningham, in her AO presentation, mentioned and showed in a bar graph the fact that PANDAS kids tend to have elevated Dopamine Receptor 2 levels, while "standard" TS kids do not; therefore, if your child presents with predominantly tics and you've wondered, via various markers and tests, whether or not you really have PANDAS on your hands or more of a TS diagnosis, then discriminating between tics and compulsions would be important, and then, just maybe, getting the Cunningham test would be important. We got the Cunningham test results May 26-CamK=166 --Kathy said that means PANDAS. This week we got the antineuronals but we're not sure of their meaning. I read an old post from Buster helping to explain the numbers. The post indicated that normal antilyso and high antitubulin could suggest sydenham's chorea. But your explanation will help too. So since her antidop 2 is low...does it work in the inverse...are we also seeing TS? If I'm interpreting this correctly my dd's antilyso=within normal limits at 160 antitubulin=highest number within normal range antidop1=4000 (twice normal high) antidop2-2000 (lowest possible number) Or is the science still so new that no real inference can be made? I appreciate everyone's knowledge! Anti-Lysoganglioside 2 hours Patient 160 positive control >1280 negative control 80 normal range 80-320 normal mean 147 Anti-Tubulin 2 hours patient 1000 positive control 16000 negative control 250 normal range 250-1000 normal mean 609 Anti-Dopamine 1 2 hours patient 4000 positive control 8000 negative control 1000 normal range 500-2000 normal mean 1056 Anti-Dopamine 2 2 hours patient 2000 positive control 32000 negative control 2000 normal range 2000-16000 normal mean 6000

Does your child have any other clear OCD traits? Contamination issues? Rituals in terms of in what order a certain process must be conducted? My dd has absolutely paralyzing OCD. She started with just a little but over the last few months the OCD symptoms have grown to include almost everything in the book. Even asked the psych (jokingly) if she was suggesting new symptoms to our dd at the appts as they seemed to increase with each appt. I guess her tics would be her sound--like nose blowing but no discharge, an odd barking throat clearing, spitting, and after reading what you wrote--this odd behavior when she sits, I think.

I watched...I cried...our children... To expose these people's pain seems so cruel but will some good come of it? Reality TV has always frightened me but the reality in my house with this awful disease frightens me too. I don't know where the ethics line should be drawn...

These posts made me request...yet again...for all of us to be drawn for ASO and AntiDnase B titers. The pediatrician was finally willing to bow to my request when I said that I am going to spend perhaps $15000 on IVIg so I better rule out any carriers or possible infective agents in the immediate family before we spend our life savings. She agreed with that logic but added that she wasn't sure our insurance company would cover the blood draw on healthy family members. Again, I said what's another couple hundred dollars when we're spending so much for IVIg. Doesn't it just seem logical to check family members who all live in the house? Thank you everyone for your posts here...I learn so very much from all of you.

My dd12 exhibits several odd physical behaviors. How can I tell the difference between a tic and a compulsion. I looked online and found some explanations but should I even care if it is a tic or a compulsion? Are they so close on some gradient that it doesn't matter? Thank you for your wisdom...I trust the opinions on this forum so much more than any doctor at this point.

Our last liquid suspension refill (generic) actually had the pharmicist questioning the properties of the mix as it was not dissolving for him. I explained that it seemed different the last time we got it too and my dd complained ferociously about it not tasting right and having a horrible texture and clumpiness. I'd swear she didn't get the proper dosig either becuase it stuck so to the walls of the spoon or dispenser (we tried several). My dd 12 determined it was best from a baking measuring spoon as she could adequately lick the rest from the spoon bowl. How can we have adequate treatment if the pharmaceutical companies don't even produce the same product with consistency?

You just described us a few weeks ago when we had dd12's Cunningham test drawn. It had only been 3 days since her last blood draw and she was irate! She defiantly screamed at us that she had been reading the American Girl My Body Book and it specifically stated that when you're growing up your body goes through changes, including behavior changes and that the doctors and us (her parents) have it all wrong--she doesn't have OCD or this PANDAS thing she's just going through puberty! I questioned our decisions but of course, I had to come back to reality...we have 2 other daughters and puberty doesn't look like PANDAS...Then a week later we got her CaMK score of 166, pretty much a confirmation that it's not a pre-puberty issue. You are doing everything right...this is not your imagination.

phasmid-my dd12 doesn't take showers in exacerbation either. I firmly believe it's an ocd issue. I know everyone wants to interpret the OCD as wanting to be clean but it's not being clean that is at issue, it's the process and my dd gets so bogged down in the process she can't even get to the shower to get clean. It is cruel to watch and I can only imagine how painfully cruel it must feel like to our kids as they live through this terror.

Thanks for sharing this. I have had eczema on my hand for years. According to links I found when I went to this article...it can be hard to discern the difference between psoriasis and eczema on the hand...back to the dermatologist.

I agree. I don't know how I'd make it through each day without this forum. I would say the burst was worth it even if all I ever get is last night's positive experience. When Dr. K put my dd on the burst he said "the worst side effect you will see is that she may be much better for a few weeks or a few months". He was trying to lighten the mood I'm sure...she has been in such an exacerbation for so long now that our mood is hard to lighten but last night she actually interacted with her sisters and my husband and I in such normal conversation and even laughed (she hasn't laughed in a long time). Things weren't great on the burst, day 1 was absolutely horrible...I must admit I was worried that maybe it wasn't going to work and then we'd have to find another diagnosis, yesterday seems to be the proof. Mind you, she isn't back to herself...but progress is evident.

Oh Melanie...my hope and wish for you is recovery/remission/cure...whatever we are supposed to call it, relief for Danny and your family and everyone on this forum.

My dd12 just finished her burst on Monday. Pill form...BAD after taste. We actually let her have a pop after taking it which is a HUGE treat in our house. Last night we saw some pretty amazing positive behavior. This morning my husband and I are flat on our backs with the flu...how will she react now?

Peglem, After all you have been through recently I'm just grateful that you are having a break...I hope and pray it lasts. Re: stripping naked...my dd has been in only underpants for 2 days now...but much more pleasant than she had been...this is just post the prednisone burst prescribed by Dr K...so it MUST be the combination of meds (IVIg for Allie and Pred for Mary Rose) and nudity near the summer solstice. Teehee--if we can't laugh through this sorrowful experience we're toast, right!?

Peglem, My daughter does not seem to hurt herself (her violence is typically directed at my husband and myself) and anything we may have considered a tic does not seem to injure her, however, she does pull out her hair and that would seem to be a painful, self injurious event but defined along the ocd spectrum rather than on the tic side. I can't help but consider that all of these things are inter-related making it so hard to tweeze out one from another.

Michael, Two months, what a long, very long wait time. Please keep posting as you continue to see improvement. My dd is having IVIg on June 14 and 15. Two months seems painfully long to wait but I do believe that the severity of symptoms that my dd has achieved have taken longer than two months to develop so perhaps it takes a while to see the immune system learn to heal itself. It is just so hard, because they are just children and they are losing so much of their childhood to this dreadful disease.

Thank you for sharing the wisdom you gleaned.

Thank you for posting this...what a phenomenal bit of research. So hopeful.

Thank you for sharing this.