dcmom

I am thinking along the lines of Peg. I am not sure I am understanding the full issue. You (and the teacher) think he is happy to go to school, behaves, and is fine academically? It sounds like maybe he is a bit unorganized? My dd had some organization issues in1st and 2nd grade. We handled it mostly ourselves. You could maybe go in after or before school once a week so he can organize his desk (this helped my dd). As far as the homework book, maybe you could highlight and paperclip the night before, where he should record his homework. As far as the pen, if you feel this is a valid request, I would speak to the teacher again. Tell her he has pandas which causes dysgraphia, OCD and anxiety. I would say right now he needs to wrote in pen, but I would also have a plan in place to get him moving toward pencil. Maybe whatever work is easiest for him can be done in pencil for now.

So- lots of parents see an increase in pandas symptoms with dental issues. I see issues arise with the loss of baby teeth in my kids. Yes, this sucks. But you can do some things to help. First, get really proactive with the dentist - I think it is wise to go every 3 mos for cleaning and check - get at problems when they are small if possible. Up the abx for dental visits , and/or consider adding a second abx for the few days surrounding. Talk about this disorder with the dentist, it is related to rheumatic heart dis (which they know about)- mine was extremely concerned/ interested. And, my dd is 40lbs and on 200mg zith daily - can you get a higher dose?

Thanks for all of the replies. We have tried to calm the situation, have a reward program set up, have given her some quick ways "out" at school via a pass to rme nurses office. We have a psychologist (new one since we moved this summer) appt on tuesday, and an llmd on Wed. I would be so willing to make accomodations for her- but along with her OCD is a fear of embarrassment at doing anything out of the norm. Needless to say it is not necessarily rational. How did your children explain the half days and missed days? My dd started a new school since we relocated this year. She is in middle school. Fortunately Sept thru Most of Dec she was in good health with almost zero pandas issues. She is normally a social butterfly, and extremely outgoing.

We have UHC- although ultimately my dh's company is self insured. I do gripe a lot- but we have had relatively good luck: no problems covering daily zith for over a year, and, although it took leg work, they eventually approved pex for both of my girls.

Ellen- how is your son these days?

Many of you know our story. I have two pandas girls. They had been in remission for 9 and 14 mos, and then relapsed right before Christmas. Things are MUCH better now, after iv steroids. They eat, sleep, cooperate, hVe fun, and their personalities are back. We have relative peace and calm. They are left with OCD, and separation Anxiety. The sep anxiety is causing major school anxiety in two girls that love school. One is 10, one is 7. What to do when they outright refuse to go? The 10yr old has told me she wants to listen to me, and make me happy, but the fear and misery of school is too strong. So far, I have been able to talk or threaten her into going. I wasn't successful with the 7 yr old today, she stayed home, so I know this is going to give the 10yr old more reason to push tomorrow. I can't, nor would I feel good about physically dragging them to school. Rewards will not work, and I don't feel good about punishing a kid whose self esteem must already be suffering. She does well at school, and does come home in a good mood. I need practical help. We are seeing a psychologist to help us next week, but how far do I push it to get them to go any tips or tricks what if they don't go what do I tell the school and I am concerned about too many absences Thanks! Eileen

HTs mom ugh. Our entire family had the stomach virus last week. Two pandas kids and parents. It was bad, at least 12 hrs of vomiting, etc. And then another 48 hrs of not eating much. I would stop the pred and redo when he is healthy- he may not keep it down....

Two girls. J, diagnosed within a month of symptom explosion at age 5.5. Remission after 30 days abx. Relapse within two months with t&A. Full remission with pex, that lasted (mostly) for 14mos. Recent relapse, now at about 85%. C, mild onset at age8.5 with major symptom explosion 9 mos later. Remission from antibiotics an steroids lasted one month. Relapse treated with pex, which gave almost full remission that lasted 9 months. Recent relapse, now at about 85%.

This is OCD- my 10yr old has this exact fear-which at times of exacerbation prevents her from eating and wanting to go out in public. Have they done a throat culture? I would suggest a throat culture immediately. I would suggest the book "What to do when your brain gets stuck" as a way for the parent to talk about this with the child, to immediately start calming the panic. If this doesn't resolve quickly, I would find a doc to prescribe 30 days of antibiotic.

S- I have to say- I agree with your DH. I am happy for the study, and hope it gives us good info. Yet I would not consider putting my child and family through the uncertainty of placebo, and the inconvenience of travelling multiple times. The only reason I would consider is if I didn't have access and funds for IVIG. Just wanted to let you know your DH is not alone in his thinking.....

Looks interesting- let us know what you think!

Dr Feldman (sr) the Feldman group friendship hts, MD referred by Dr L, did my daughtrs T&A

This is a question I would love to know the answer to. I am not sure that there is one answer.... This worse before better issue has held me back from seeking IVIG for my kids. I have been reading a bit about MS treatments lately, and many MS docs seem to give IV steroid with the IVIG- I wonder if this could help our kids avoid a flare up?

I have to admit I am a little nervous about the cases.... If anyone has another option without a 6 mos wait and a $1000 charge (x2 kids).....in the NE..... Please pm me.

I will be interested in the answers as we have our first appt with Beals on 2/9. We did Igenex, and I am hoping that will be enough for now- kids (and I) are tired of tests, and well, tired. I know we cannot due the bicillin injections, as one ddvis most likely allergic, and the other has major needle fear.

Ha. We went to a local Ny neurologist who has a good rep. They took my insurance copay, we saw the doc for 10 minutes, she tried to feed us some outdated and irrelevant info on pandas, said my daughter would be fine- go see a psych. Just got a $600 bill (claiming they don't accept my insurance). It will be a cold day you know where before they see another dime.

Colleen I agree- these docs get on their high horse and do not care about our kids. They forget, sometimes they should stop looking at study after study, and look at the REAL suffering of our kids- and try to help- even if that means thinking out of the box. I mean didn't they learn anything in med school? Isn't this why they get the big bucks? I have spoken several times w/ one of these docs, and even though he thinks it is very likey my dd has pandas- he told me NOT to come to him (and he is the head of neurology at his hospital). Also, another major local hospital does not treat pandas- I called the neurologr dept, and there is not a doc there that will see a pandas patient.

No more strep - triggers were H1N1 and cld/virus

Does anyone have the full copy? I am exploring Lyme/ multiple infections- but if we have no success- my next step is looking at something like this or low dose cellcept.

Three rounds of pheresis in 4 days for my 2 kids. We saw immediate results, one 110%, the other 90%. These results lasted until the next trigger. Not a cure in our case, but a great and quick way to get to baseline.

Thanks! That is just what I wanted to hear . We have an appt 2/9. I do really want to try the antibiotic cocktail approach to see if we can have some longer term improvement.... (we also have indication of Lyme exposure via Igenex).

My kids both had pex- they both had an amazingly positive response to it. It is not without risks however. I was recently trying to figure out if I could find an option closer to home. I even spoke with the pheresis/transfusion dept at a major local hospital. The doc there was familiar, and believedvin pheresis for pandas- she said their dep would do it- but I needed a doc to Rx it. She said NONE of the staff docs will treat pandas, so I would need a doc in private practice with hospital priveledges to rx. There is no one. Insurance covg is a whole other issue. E

Dr C has a 6 mos + waiting list

JT Mom have you found a doc you like?

So- I want to investigate Lyme further . I made an appt with Dr B in MD. Googling his name brings up info about cases and disciplinary actions against him. I know about the witch hunt fir Lyme docs, but the details of the cases sounded very fringe (at best) to me. I didn't want to wait, or pay for DrJ in CT if I don't need to. For those who have seen him, can you fill me in on some details and what you think... Thanks Eileen