dcmom

Cfamily this is so hard, I wanted to give you our perspective- which is similar to most above. I have two pandas daughters who LOVE and thrive in public school. Pandas hit our family two years ago, and we came face to face with this decision twice- at different times, during crisis points for each dd. We made two different decisions- and in hindsight feel we did the best thing both times. My younger dd had an overnight acute onset in kindergarten. School was tough; OCD, sep anxiety, etc. We pushed school (lots of arriving late, half days, checking in at lunch, and even allowing pjs to be worn). We were kind and patient, yet pretty firm. We felt good about this because she loved school, had a loving teacher and loving group of friends, and came home much happier for having come. My older dd was 9 when she had an overnight acute relapse. Major OCD: germ, fear of being embarrassed, tons of symptoms. We tried school- but after observing her there (my former outgoing, bubbly class president now sat in the back, expressionless, staring out the window- a shadow of her former self) we pulled her out. We have always framedvpandas as a medical illness, ( although we do discuss like many patients need physical therapy, pandas kids need therapy to become strong and fully healthy). After medical treatment she was begging to go back to school. Both of my kids love, and thrive at school. I am not interested in homeschooling (as long as their health holds out). So we have, for now, a committment to working with the school (we have had nothing but understanding from the schools). However, my girls tend to have overnight debilitating episodes that come with lots of panic. ERP is done gradually, small steps- it is not always possible to do that and attend acho. So- of need be- we pull them out- with the clear expectation that they will be returning. We keep up with schoolwork and friends, start working on ERP, and seek medical intervention. So- my advice is to go with your gut. My goal for the worst days is to bring as much joy to their life as possible- if that is in school , push her- if school is making her feel horrible- consider temporary homebound- or maybe the best is a combination- half day? Good luck- and bless your dear husband for sitting outside the classroom (that is normally my job).

Rjayne I am sorry about your daughter thank you for sharing. I do think finding an autoimmune doc to help manage pandas is important, and I am working on it. I did meet with an adult autoimmune doc who suggested that low dose cellcept would be something to consider. Can you discuss (from a mom's point of view) the risks or side effects, and the effectiveness? Thanks!

My dd had H1N1 not long after plasma pheresis. We gave her tamiflu to shorten the flu, and 36 hours after her fever subsided she was into another pandas episode. We gave her a steroid taper, which worked. She remained mostly symptom free for over a year. Some kids have had no reaction to the flu- I think H1N1 was worse. I think if you have had luck with steroids, it is good to have them on hand.

That is great news Kayanne!

What did Dr L say?

I should add- the flu we had was H1N1.

We had positive results with tamiflu. Pandas dd took it within first 12 hours of contracting flu from sister. It stopped the flu within another 12 hrs. She proceeded to go into pandas episode quickly and dramatically, which we treated with steroid within 36 hours. Episode was halted. Tamiflu and steroids worked dramatically to save our dd from a major episode.

Doug and Tracie We see similar in our 10 yr old. We have seen this twice, both during the recovery stage. Last year she had pex for an episode, and recently high dose steroids. This is where she is now: wakes up pretty cheerful, goes to school happily, straight As, tons of friends. Comes home happy, talks of the day, does homework. When this is all done, things deteriorate; moody, defiant, somewhat regressive. However, if she gets into a project she is good ( a little manic about the project, however). Last year in this stage - the kids at school were making little shoebox houses for fun- well we had a mansion, hotel, mall, amusement park etc. It is almost like a bit of a manic hyper focus- art/ creativity/ crafts are usually the subject, but Harry Potter and piano have also been involved. We are now decorating cakes I will say- I tried to have lots of supplies and suggestions- because compared to everything else- this wasn't bad. I did find that it slowly subsided ( over 2 mos I think). We would liken her many eccentric artists, that lock themselves away for a few months during a period of heightened creativity. I think if you have cleared all infections, and she is doing well at school- I would track this behavior weekly, to see where it goes. Also if you work proactively to channel it while you wait for it to calm down. Does she play N instrument?

Good news Worried Dad! We are in the same boat- and not asking medical advice (we have an llmd appt soon)- but curious on what he said about the test results. Both my kids also are positive IGM Igenex western blot, completely negative IGG. We had an ID doc ( treats lyme, recommended by Dr Fallon) tell us they may have had exposure, but due to the nature of our pandas treatment (daily full strength zith indefinately), he didn't think we needed to do anything further now. We are seeing another llmd for second opinion. I am wondering what he said about positive IGM thanks

I have one Pandas daughter who urinated 20 times per day. She is 10, and was able to verbalize that she has the constant feeling of needing to go, or maybe more accurately urinating doesn't alleviate that feeling. For my younger one- this is THE worst symptom. She avoids going to the bathroom-when she does go she gets EXTREMELY angry prior (stress), wipes excessively, and sometimes cries for a half hour after. On her worst day, she will hold herself like a kid that has to urinate (even after she goes) for almost the whole day. For her, I think this is a definate physical symptom (like the sister) but it is aggravated by her sensory issues, and then triggers OCD around it. It makes her EXTREMELY miserable.

I have been thinking about this lately, and am pursuing this line of thought with a lupus doc. He seems to think there are meds which could help avoid major flareups. Of course, most autoimmune drugs have a heavy list of side effects or risks- so I am not sure we will go this route- but I do think our kids should have a doc with major autoimmune experience on their case. If pandas is as defined- an autoimmune disorder- we shouldn't have to completely reinvent the wheel- we should be learning from the treatment of these other illnesses.

Fr88 I have wondered about this also. In reality, we cannot fully protect our children from illness and possible exacerbation. Are we better off stepping down a bit on antibiotics (if there is no current source of infection and this stepping down doesn't cause a resurgence of symptoms)- yet having procedures in place (IV corticosteroids and/or pex) to jump to immediately at first sign of clear episode. In our case, most exacerbations have a clear onset, but symptoms snowball over the following weeks. What if within a few days of onset- (if no sign of infection)- we could go right to immune modulation (iv steroid)- stopping (hopefully) many symptoms before they start. This is something I am working on with a doc- hoping to get him in agreement. This also goes to another post- I really think pandas needs to be treated by docs that deal with autoimmunity daily- MS and lupus docs. If we can get one open and interested in pandas- they may have more tools we can use.

Ugh-pixiesmommy.... Don't have any advice,just wanted to let you know I feel for you. We moved recently, my kids hAve had a flare up and we are looking into Lyme. We have been to so many docs- it is costing so much and my head is spinning. This is really tough. I think it is important to try to make a game plan, at a time when you are of clear mind and not with the kids. ( That is almost never for me). Try to work through these appts methodically. I have a rule that if a test is not going to really affect the treatment course- we absolutely do not do it. Are there any other llmd's in your area? It is so helpful to have a doc you can trust, and really work with. Hope Pixie is on the mend- you do an unbelievably great job with her.

I will concur with Nancy about time as a big factor. My dd continued to heal, and we saw symptoms continue to resolve for quite some time post treatment. Especially, mood/ temper issues and some hyperactivity- took a little longer bot did resolve. I think we were also able to see these issues more clearly once the debilitating OCD was gone. I feel, if you are in a pretty good place, ride it out a little longer in hopes of seeing some slow improvement. I think, if lyme is a possibility, when things are calm is a good time to explore it, and look at things with a clearer mind. Wishing you continued healing!

Fr88- I hope you are still on the forum- as parents your input is invaluable. Both daughters are IGM positive ( one 5 bands, one 7 bands). Both are IGG negative- no bands ther (except I think ind or positive on 41). I am aware there are two possible "sides" to this ( possibly cross reactivity, possibly chronic Lyme). The thing is, we have been at this for about 2 yrs. We have been aggressive; lots of docs, abx, steroids, plasma pheresis, iv steroids- we achieve remission- bot it doesn't seem to last long. If there could be help with Lyme treatment ( whatever the reason), I want to try it now- not 5 yrs from now. I think we have little to lose with some time on an antibiotic cocktail, and everything to gain. Something came along two years ago and changed the course of my girls lives, from 2 robustly heAlthy, happy and carefree kids, to two girls riddled with anxiety and other issues. As I am sure you are aware, it has been deveatatimg to all. I will keep everyone updated.

As many of you know, I have been pursuing Lyme testing with my girls. It is possible they are both positive. The doctor who tested them via Igenex does feel there was recent Lyme exposure, but is not suggesting aggressive treatment. We have been very aggressive pursuing medical interventions to get these kids well, and we don't plan to stop now. Two questions: for those who are pandas/Lyme: our only symptom is OCD- did your children have OCD and to what extent was it helped by Lyme treatment? Secondly, I need a doctor- we are in the NY/NJ area. I am considering Dr Jones, but a little concerned about finances. Does anyone have suggestions? Thanks!

Fr88- can you jump over to the pandas forum and share your experience; what worked, what didn't.

I will add that steroids have been a really important tool in treating pandas on our end. They have pulled us out of crisis a few times. We have not had any major symptoms/side effects while on them, quite the opposite actually. We have had one exacerbation in my daughter that needed steroids, due to several strep exposures. I am all for searching for underlying infections- am working on that now.

If you are worried about this, can't you testiver function frequently?

Why couldn't she handle the steroids, what happened? What was the dosing, and her size? Steroids have been lifesavers for us...

At 95%, I would not change a thing. Time is always a bog part of the recovery equation (which I am reminding myself now).

I am not sure if burst is a specific technical term. For the most part we have done a four week course, cutting dose each week.

We have had great response sustained, great response short term, and seemingly no response with steroid bursts. I have no explanation of the difference in response we have seen. I hope you see some gains soon.

Great book "sex and sensibility". About talking openly with kids the main idea being NOT to have the talk, but to bring conversation about sex, and very importantly love relationships and your values within those conversations have these conversations daily, informally, somewhat matter of factly the book will be really helpful in getting you going

I am so sorry. Try to find a wise adult to talk to about this on a daily basis. Take care of yourself- you matter to a lot of people! We (the forum and our kids) need you to continue to show us the way.