bronxmom2

I have a similar story. In hindsight, I am now quite sure I had PANDAS as a child. And I am now quite sure that my PANDAS son and I affect each other. Before I knew about PANDAS, I called this our "death spiral"-- when his behavior spun out of control, I seemed to really lose my bearings as well, feeding his loss of control, creating a deep depression in myself, etc. I have been tempted to get my Cam K number as well.

I love the use of "Cunningham" as a verb.

What my son does is like the butterfly stroke-- big arm swoops. He tries to mask it too.

Thanks guys. The school definitely knows he has a hypersensitive immune system (this was my excuse for keeping him out), so they were supposedly on the lookout, and I am not aware of any specific exposure to anything. His immunological testing was supposedly normal... could he be this sensitive? I know I need to make this decision myself but... should I follow my instinct and send in the Letter of Intent to Homeschool?

As always I am so grateful for this forum... I read all the posts and learn so much and suffer and hope with all of you. My DS is doing a 30-day steroid course through Dr. L... he is 3 weeks in. The first thing we noticed disappear was this weird arm swinging thing he does, which I always thought was hyperactivity but now understand as chorea. Anyway, it disappeared after a few days on steroids. Whew. Big relief. I decided to keep my son out of school while he was on the steroid, because I wanted to watch him, because his I knew his immune system would be compromised, because I wanted to experiment with home schooling (like many of you I have a gifted but unmotivated, anxious child who has areas of almost preternatural strength but who won't write and hates math). Anyway I thought I had an agreement with the school to explain his prolonged absense... long story short I got "busted" by the truancy office and threatened with a visit from Children's Service. So with a gun to my head (I couldn't get Dr. Latimer or my ped to call me back about providing a letter) I send him back to school on Wednesday. By Friday the arm swinging was back in full force, along with some other symptoms... although after a while I question my own perceptions... I feel like I worked hard for 2.5 weeks to restore sanity and 3 days at school unraveled everything. My feeling is that he can't tolerate the exposure at school. Is that possible? Am I just anti-school and looking for an excuse to pull him out permanently?

I'm don't know, I have wondered a bit, I see that she orders PEX a lot of the time but it wasn't even mentioned for us. I didn't question it because based on what I've read here I think IVIG is the right thing for him too... his issues are mainly behavioral, OCD not tics, emotional volatility, etc... though she did find some chorea-- maybe she thinks that PEX is better for ticcy kids, IVIG for OCD kids? Good luck with the PEX!!!! I too am bracing for setbacks.

Hi Debbi, I'm glad you're daughter's a little better, I worried about this all night, because it sounds much like my son's experience... a definite dip in improvement after the switch from 3 to 2 pills, then stabilization and further improvement. We are on the third week now, and he is definitely better, stabler, etc. HOWEVER. When I was where you are right now (last week), I was totally freaking out and feeling like I was losing my mind, I called Dr. L and explained what was happening... and she authorized the IVIG. She was extremely nice during that call and I cried with gratitude. Huge, huge relief because I feel this is what he needs, and was skeptical about the steroids all along, though I understood why we were doing them. However I do have the Dr. Cunningham score (yes that's what SFMom was referring to), which for my ds was 160. I doubt she will authorize the IVIG without that number. So perhaps it will take a little patience on your part. They seem to have gotten the IVIG preapproved by the insurance company too, we have a date and everything (Oct. 26)... it all seems too good to be true, I didn't even want to share this information with you because I'm so scared it won't go through somehow, I am holding my breath until this happens. Good luck, hold firm, insist on the treatment that you believe your daughter needs.

Thanks! At some point... I hesistate to say this... at some point I was "hoping" for a negative result to these tests, so that the insurance company would cover the IVIG... now it seems they have preapproved it based on a diagnosis of PANDAS (knock wood), so maybe things are getting easier out there... maybe things will be easier for the next wave of parents.

Hey, I just got the results of our blood work, over the phone so I haven't seen them. Ig was all normal. He failed 5/14 pneumoccal titers. I have read about lots of kids failing all or most of the pneumococcal titers, but...5? Maybe all kids would fail some of them if they were tested... as Dr. Latimer said, it's not like we're going around testing all the 8 year olds for this stuff... I guess this tells me he does not have an underlying immune deficiency. Maybe I can hope that one IVIG will provide lasting result?

yes, she did... she extended it by two weeks, at the end of the taper though. (not for my child)

Hi, I just wanted to say that I also noticed a slip when my son went from 3 pills to 2 pills. For us it was a return of emotional volatility, and he started shouting instead of talking. I definitely became very disheartened. It seemed to stabilize again about 4 days into the second week (a few days past where you are)... Now he has switched to one pill, I did not notice the same deterioration when he went from two pills to one.... he does seem to be steadily getting better, but it's so hard to tell... I would call if you have concerns. Possibly your daughter can take the higher dose for longer?

IVIG... I hope!

I have to share my school picture story too... last year my son was in his first over-the-top PANDAS episode for his first grade picture. (We also did not know what was happening) He insisted on wearing a jacket and tie (I should have known something was up) because he'd decided to pretend that he was Doctor Jones, as in... Indiana Jones when he's a professor. To do this he made a maniacal face, tilted his head to the side, raised one eyebrow wildly, made a crooked grin... his eyes look all crazed, his tie's askew, his face is red, his hair's standing on end.... hands down the worst school picture ever taken. But it did make me laugh in one of my darkest hours. For the group picture, he appears to be pretending to run from a giant boulder. The rest of the class is just standing there, smiling sweetly.

well, I only have a moment, and this is complicated, but I think it did help in some ways, but I don't think its going to be a solution for us-- it's just been going on too many years- and I was so relieved when she concurred. I know steroids make people agitated, and agitation and hyperactivity were primary complaints to begin with, so it's hard to assess how he's doing. I wonder if steroids tend to work better for girls-- as a treatment, I mean? If he had been given a five day burst, we probably would have said it showed clinical improvement, but it's hard to say. Anyway we'll continue with the steroids for now, it's not a total disaster but he's pretty jittery. Also his face is all red. And like I said he is shouting.

My son is also 7 and can never tell when his behavior is different, and seems to have zero sense of how he impacts other people. I hate to say it, but maybe it's a boy thing?

No strep (I don't think), but VERRY difficult recovery (three full weeks of acute pain)... which I've heard is not unusual for PANDAS kids or kids with very enlarged/encrypted tonsils.

Thanks guys. Karen, I have read many of your emails about your success with steroids. I just wanted to add that on days 11/12 he got significantly more jittery and hyper and his normal voice is now a shout. If you don't feed him the instant he feel hungry, he crashes immediately. It's like he can't be around other children at all. He can stay calm if he is alone, and when we're alone I start to think maybe the steroids are working, but if he's with other kids he seems to go neurologically off the rails-- I mean his color changes, his pupils dilate, etc. He's out of school now, and I even had to drag him out of a science class for homeschoolers on Thursday. I brought him to work with me today, which normally works OK because he can do a combination of computer time and other activities we have here (an education library) but there happened to be another kid here today, and he's bonkers. Have you ever heard of a child who needs to be totally isolated from other children? I'd be totally hysterical right now (I mean, I spend most of Friday crying) if Dr. L hadn't returned my call on Friday and instantly, calmly concluded that we need to move on from the steroids... bless her, really...

Melanie, I don't know the answer to your question, but I'm so glad Danny's doing well!

I think she's hardest on you because you are the one who is calling her on everything, trying to get her to change her behavior, etc.... as I explain to my son when he wonders why I am so hard on him: I have to be because I am the one who is really responsible for who him, who he is, so I have to care more than anyone else. Similarly, she's most comfortable with you and can really show her emotional distress. Those power struggles are horrible, though. Do try to pick your battles and don't drive yourself crazy. And don't second guess yourself! Maybe your daughter's ready for a week at grandpas?????

I had it. I'm quite certain of it. I had lots of strep, then at age 6-7 I developed a vocal tic and irrational feelings of guilt. I suffered through my whole adolescence and young adulthood from an inexplicable emotional pain and was hospitalized several times around age 18 because I was suicidal. I also self-injured. I was suicidal through my twenties, but I resisted all the diagnoses that came my way because they did not quite make sense to me. I also refused psychiatric medication because of a gut instinct that it would do not good. I now realize the obsession with suicide-- could not shake the suicidal thoughts-- was OCD. Anyway pregnancy seem to cure me of all my emotional problems. I am suffering now, but it's from watching my son suffer. Or is it? For the last few years, while this thing has ravaged my son, I've gotten sicker and sicker myself. Chronic sinus infections (I have one now)... which debilitate me emotionally (I've read about the link between sinus and depression) I find myself wondering if this resistant streptococcus pneumonai we've been discussing, which seems to have taken root in my son, has taken root in me again as well.

Thanks. We did the immunological bloodwork before starting the steroids, and I'm still waiting for the results. Everything seems to take longer here in NYC. I have read about joint pain as a common complaint, but I thought it was a little odd that my son didn't complain of it until 9 days into steroids, not before.

OK, my son is 10 days into a 30-day steroid burst prescribed by Dr. Latimer. We have seen some improvements-- choreaic movements disappeared, focus is better, he is generally less impossible to be with... but nothing drastic. In particular he still struggles to interact normally with his peers. He plays better one on one (for while, he couldn't even do that), but in a group of children... he just can't do it. He's out of school now, and I even had to pull him out of the science class I was trying. Also, he has complained about some joint pain. I guess I'm just looking for someone to tell me that it might still work!

Thanks, I made an executive decision and upped his dose to treatment dose while he's getting the steroid.

I'm waiting for pre-IVIG numbers right now... I'll post when I get them. At this point I'll be surprised if my son doesn't fail the S. Pneumonaie titers... increasingly, this seems to be the smoking gun.