dcmom

I have two girls with pandas- in short "no" we have not seen a worsening with subsequent infections. youngest daughter: initial onset with strep- very severe- her worst relaps with H1N1- stopped immediately with steroid burst relaps with virus- bad- but not as debilitating second strep triggered episode- bad again, debilitating, but for less duration- maybe due to treatment- however the 100% improvement has proven to be a bit more elusive. oldest daughter initial onset with strep- mild- ish relapse H1N1- worse, but short lived due to treatment relaps with virus- horrific- had pex relapse with virus- bad again (nowhere near last relapse) relapse with strep- fairly mild- due to treatment GO FIGURE!!!!

Hi everyone! Finally have a moment to sit at the computer (and not my phone). We are at USF for intensive ocd therapy now. We arrived Sunday, and had our first meeting on Monday. I will give you some info, first impressions, really! We are staying at the Ronald McDonald house. The first night (we arrived late and tired) I was not sure if it would turn out to be so great- but now that we are here for a few days- it really is. There are many benefits: firstly it is spotless, and the managers and volunteers, and guests are all very kind. We have our own room (2 double beds) with a bath. There are several tv dens, a playroom, a huge 4 kitchen dining space, and a yard. Volunteers cook dinner just about every night (tonight was a BBQ) with love. There is always food available. The kitchen area is large (4 kitchens, really) fully equipped and comfortable. We haven't, but one could certainly cook a full meal here. Every family has refrig space and pantry space, for your own food. It is as close to a home as it could be. The house is 5 to 6 blocks from the grocery store and cvs. Three blocks from Dr Storch's office. So far, we haven't rented a car. There are several things to do a short cab ride away. We plan to rent a car later in our stay. The are some intangibles: although our kids suffer so- and they know it, we are reminded daily here that what we are dealing with is somewhat small potatoes compared to what other residents are dealing with. I think this has been humbling for myself and my daughters. It is also beyond touching to see charity in action- for some families this organization is literally a lifesaver. We plan to make cupcakes for the whole house once a week, and are already thinking about getting involved with the RMH in our area. I do think the stay at the house will enrich our visit somehow (although we are NOT sipping frozen drinks at poolside- which has its own benefits). Of course, there is a huge financial benefit. They ask $10/night, and for that we have many/ most meals and laundry- and don't really need a car. We (thankfully) probably don't NEED the house, like many of the others here, yet it is a huge financial break. We have paid a lot (as everyone on the forum) in medical bills in the last two years. While we could have swung a rental or hotel- it would be a financial burden. This way, we are able to save those funds for possible IVIG or PEX in the future, and just maybe a family vacation. We are also taking the kids to Disney for a long weekend after the program (as a reward/incentive)- which would have been impossible if we had to foot the bill for a hotel/condo while here. I think it is in some ways harder for me (compared to staying at a condo)- due to very little down time- but in other ways (having others prepare dinner every night) it is a break As far as the therapy- it is too soon to tell. Obviously Dr Storch is brilliant, and KNOWS pandas. He is not our therapist (initial meeting was with him). We have gentelman dr. who we saw for the first time today. I can tell you, my younger daughter was less than cooperative, and less than thrilled in the session. I am confident that this is the best place for ERP/ CBT- which is why we are here. I completely accept and understand that future episodes will require medical intervention and time, but will also require tools that I hope the girls will learn here. I am here with the feeling that this is the beginning (and an awesome beginning) of therapy, and that we will need to "brush up" in the future. But- I am here because I want to do the best, to give my daughters the tools to LIVE their lives the way they want. Also- there is the real fact that this is covered by insurance for us- whereas any quality therapist I have found in NJ does NOT accept any insurance. I think the daily (for three weeks) format will be REALLY key. This could be done with a local therapist (we did have one we liked in DC)- but at $200 a pop x 15 days x 2 kids.... you get the picture. That is all for now. Dr Storch implied there were other pandas families at USF now, and maybe in the house- which is why my original post....... I am planning a full update for mid Sept (when school is back in session).....

Burnell- what dates will you be at USF- we are here now. Write more later!

Is anyone at USF/ All Childrens this month?

To be honest- I haven't run into this situation much. Our dentist has been outstanding! Understanding about the disorder medically and emotionally, and even researched a bit online. We moved, however, and I am starting over with all new people I think if I had the experience that they weren't listening or interested, I would start looking for a new dentist. It sounds like YOU did everything right.

I think it is FAlling apart- she is on the lyme forum these days- I think....

Oh and BTW- pandas hit my little on in K, age 5. By the end of K she could only write 1- 10. the teens were a disaster, and many numbers were backward. She had pex in Oct of first grade (nothing had improved yet with the number writing)- and literally the day after she came home from the hospital I asked her to write 1 to 100- and she did it PERFECTLY. Also- we had spent a lot of the summer trying to get the days of the week down, in order. Couldn't do it- week after pex- told them to me (without me saying first) and never had a problem since. Unbelievable- right?

Worried Dad- I would say my dd 11 has similar experience. She has always been good at math, ahead of what they are doing in class- so if there was a deterioration- we did not notice. BUT- not sure if it is an ocd thing, or a math mind block thing- she complains and has issues if she has to do the work in a specific way and show the work. She almost has to do the problems, then go back and create the "work". I would say, however, that her spelling REALLY suffered. In second grade she was one of the top two spellers in the class, teacher made up a harder list for her and other child. Fourth grade pandas hit- she did fine in school, but my concern with school work was on the back burner. Starting fifth grade- her English teacher said she excelled in writing, but her spelling needed a lot of work. I was floored- but looked at her stuff and it was true. Now at the end of fifth- it has gotten better. Spelling can be a disgraphia issue- basal ganglia!! These issues are why it is SO important to treat aggressively medically, and NOT just medicate psych symptoms. So few, even pandas sympathetic docs, really get this. (preaching to the choir- I know).

Unfortunately, the IVIG is a study- not a treatment plan. So- they need to pick kids that meet a certain criteria strictly. It is unfortunate for you- but WE ALL need this study to be done correctly. IVIG is readily available if you want it, if you see certain pandas docs.

Hi Mamapanda- I am sorry you are dealing with this. I am going to lay it out for you- as I would like to hear it- hope this isn't too blunt... Pandas is really hard. That is why this forum is so active. The GREAT news is, that your son responds to antibiotics (that is not always the case, and unfortunately doesn't always remain the case). You need to get him on longer term daily dosing at treatment strength. Now. Pandas is an illness where, you, as the mom need to take charge. You need to call the docs, or email, and find out how they treat. Or throw their name out here. You will NEED a pandas doc. That may mean a 3 hour drive, 6 hour drive, or a plane flight. This is the reality. A pediatrician will not suffice in treating pandas. It is great to have one on board- they can be helpful- but it is a specialist's area- and there are few in the country who really treat successfully. You need a pandas doc to get your child on the proper antibiotics. You need to keep them on board if, god forbid, the antibiotics stop working, and you need to be more aggressive. The sooner you just accept this- (and all of the logistic and financial difficulties it presents)- the sooner your child will be well, and you will have a doc that will give you some peace of mind. Where do you live.

Is this the doc you are referring to? http://www.naplesnews.com/news/2011/jul/22/Dr-James-Schaller-accused-gun-head-custody/?legalforum=1 Gosh- I worry that sometimes one doc's words are taken as "gospel". These are our kids, and we need to be really careful who we are trusting.

I am sorta glad to hear someone else had a bad reaction to the NAC- sometimes I feel like I am going crazy do you think the tru calm / GABA would be different?

Thanks! I had them on CoQ10 for about 4 mos. Really no change- either way. To be honest- the only things I have seen that have positive effects are oral steroids, IV solumedral (steroids) and PEX. Antibiotics helped them both in the beginning- but they don't seem to be dependent on them. I tried nordic naturals fish oil twice- and although it most likely was a coincidence- within a couple of days I felt there might have been some negative result (for both). I tried NAC with the older one- but had a bad day within first two weeks of starting - so I bailed. I guess I am to a point, where I really don't want to give them something unless it REALLY does something noticeably positive. I am so afraid of unintended consequences. Both of my girls have always been healthy, and 100% "normal" prior to pandas, and when in remission- that I have just decided to be very careful. I am now debating what to do about antibiotics when school starts. I really like having them off of everything- but don't know if I will be able to stomach it during school. They both did, however, get strep on multiple antibiotics- which is what started me wondering what the antibiotics are really doing for us.....

Nancy- This sounds great! My kids are doing ok- both totally out of crisis and happy- but struggling with a bit of remaining ocd. We are doing intensive therapy in August to help- but I so believe this is physical (afer pex they were left with NO ocd)- that I want to work on that end. I have taken them off of EVERYTHING. Right now, they are only taking a small amt of probiotics and vit D (no antibiotics here, either!). I would like to add something to the mix to possibly help with the ocd. Any thoughts on which item in your arsenal has the MOST effects- quickly- that you would start with. Maybe the True Calm? The Delsym? I have not been a big supplementer- and kinda glaze over when I see a long list- so want to proceed very simply. Thanks for your thoughts! Eileen

Hhhmm... So glad you have seen good results. The abx question is tough. My kids are generally healthy (minus pandas, of course). They were on daily antibiotics (zithromax) for a year when we lived in DC. One of the two was CONSTANTLY exposed to strep, and never got it. We then moved to NJ. We at the same time, explored lyme, and put them on multiple antibiotics for about 6 mos. During that time, they both contracted strep (at the same time)- one was on full strength zith and full strength augmentin, the other on full strength zith and rifampin. Obviously, it was a pretty resistant strain. Well- the world did not end. We gave them 14 days of clindamycin immediately. Within a few weeks, we did IV steroids with both (when we started seeing pandas issues resurface). They are now stable, and (temporarily) off all antibiotics- to give them a break. They are hovering around 85 to 90%, I am hoping time will bring us to 100%. Thankfully, insurance has not made an issue of the meds (knock on wood...)- but we are now at a crossroads- deciding what to do. I DO NOT like keeping them on daily antibiotics- if it is not helping them daily, and if it is not foolproof in preventing strep. So far, our record on antibiotics has been the same as prior to pandas- strep every other year. We are planning to re evaluate with our neurologist prior to school starting. In the meantime, I am holding my breath, and giving their systems a break. The neurologist thought we should consider omnicef- as a preventative- due to obviously resistant strains- maybe that is an option your insurance will pay for. I would also consider asking for an exception- as there are many illnesses that require daily antibiotics. (I am a bit of a hoarder with meds- now- so I like to have a daily prescription, and some extra meds in the cabinet- even if we opt to do less). I will keep you posted on what we decide- I think for my own sanity I will keep them on some abx this school year.....

We are heading to florida with Dr Storch next month. Insurance will cover, and we will stay in the Ronald McDonald house for 3 weeks. This makes it pretty economical. Their group is one of the best in the country- and understands pandas well.

We will be there starting Aug 1- for 3 wks!

While I don't have it in front of me, I do think that Dr Murphy did successfully raise dosing in pandas kids, but it was a start low and move slow type schedule. We tried low dose zoloft at 12.5 mg- did not really feel it did anything. We decided to stop, as our neuro wasn't really that into it. Our other issue is that our daughter's ocd/pandas has been a moving target this winter/ spring. It has been very hard to tell what works, and what is just the healing process.... I would not be against raising dosage though- see if you can look at that study- and move slowly. If it helps ocd that would be great!

I think it is interesting to discuss also. I think we have all seen here, that it is very easy to find docs with varying opinions on the same test results. If this wasn't the case, there would be less need for this forum. Our cases are all very difficult, and need to be diagnosed with test results and clinical picture. It is great for us to discuss our docs differing views, because in the end, WE are the decision makers, the more info the better.

yes michigan pandas- we are in the exact same place. Separation anxiety, and fear of vomiting are about all that is left. Otherwise, she is physically well, mostly happy, etc. BUT this ocd gets in the way, and harms self esteem (certainly). She is 11, and NEVER had any anxiety prior to pandas hitting two years ago. SO- it is very difficult to see. On the other hand, we have had a couple of REALLY dark times due to pandas- so. we are thankful to have our girl now. And I too am terrified of doing anything to mess it up. Our plan: no antibiotics this summer, unless: I change my mind , she gets sick, others around her are sick, or her symptoms increase. continue on probiotics and vitamin d (she was low in Vit D) stay off the zoloft I added NAC this morning. I plan to do 1 600mg tablet 2x/day for two weeks, and then try upping to 2 tablets twice a day. Will see if this helps. Will add vitamin C, also. We are also doing a three week ocd intensive in August. We will re focus at the beginning of September to devise a plan for the school year (re antibiotics, and help for a possible exacerbation). I hope all of this will enable her to get to school in the fall....

Paula- I agree with Pandas16. Unfortunately, you can seek out several docs, and get several different opinions. And of course, there was a study once, that if you test for a certain number of things, you will find something. The trick is to determine if any of these flags coincide with any symptoms you have, and if treatment is helpful. In the end, I think you need to go with what makes sense. Do you have the symptoms of these illnesses? Is the risk of treatment, worth the possible benefit. And does treatment help.... Good luck!

Thanks Nancy! We think she is allergic to penicillins- which leaves pen, amox, and augmentin out. (plan on doing challenge in Sept/oct) She did zithromax- which did help her at initial onset, with symptoms. But, no longer seems to. Her main issue is mild ocd. Everything has the ocd at its root. Even if she is occasionally moody- it seems to be caused by underlying ocd. Also, as of late, separation anxiety is an issue- which to me seems like part of the ocd spectrum. Thankfully, she is participating in art camp, socializing with friends, and doing stuff without me. But it is harder for her than it should be- her nature it extremely confident and independent. So- penicillins are out. I have zoloft in my cabinet- but I hear you- and don't want to waste 3 to 6 weeks. What could I use to work on glutamate- that is NOT a heavy hitter (she is just not bad enough)... Nancy? anyone? Thx-

I didn't want to hijack another post, but this is what I am dealing with now. DD 11- had a really rough pandas year. Exacerbation in Dec due to virus, then mid April almost fully recovered, had strep. She is now in a decent place. Mood pretty good, eating, sleeping, mild ocd. NOT 100%. She has been off of everything for about 4 weeks. Only taking probiotics (theralac 2x day) and vitamin D. I am starting to feel somewhat confident that the daily antibiotics she has been on for 2 years, were not doing too much for symptom control, and in the end didn't prevent strep. She did try zoloft at 12.5 mg in the spring, but we could not make a clear connection with improvement- however things were very changeable. I am thinking of starting something- since she has stayed fairly stable for the last 2 mos. Should I try zoloft or antibiotics? I am thinking zoloft. We are going on vacation next week, so she should be better in general, but I know it takes a few weeks to kick in. Maybe I will start her on 12.5 mg this week. At what point do I consider raising the dose? Thinking out loud- thoughts appreciated...

The deal is, there is NO research on this subject- in the general population, even. Theoretically, if vaxed, you should have some immunity- but there are a lot of factors- the vaccine could be faulty (I think this is a major possibility- do you trust the drug companies?, if given advil with vaccination it could render it less effective (somewhat recent study about all vaccines), etc. Our team of immunologists at Gtown said they do not consider it a deficiency. I think you will find the same with the majority of mainstream docs. I of course, would not even consider revaxing- but I would think if you were immune deficient- there would be other numbers out of whack. Interestingly enough, my kids had extremely robust pneumo titers. They are both classic pandas. However- you are not imagining things. I have a personal thought that whatever this pandas stuff is, can slowly CAUSE immune deficiency. Maybe the horrific strain of strep that triggers the autoimminity also damages the immune system? Ran it by DR T- he said could be the case. My older dd was NEVER sick, second grade- perfect attendance. Since pandas, I would say she has missed an avg of three weeks of the school year for illness (pandas ocd/anxiety not included). Nothing major, a virus, H1N1, strep- stuff that is going around. It isn't enough to say immune deficiency- although some numbers are on the lowish side- but I wonder if she is headed that way. I also wonder what daily antibiotics for two years does to your immune system? Unfortunately, I am at the point where I no longer have too much trust in how much doctors really know. I know that I can seek out ones to say: no pandas, yes pandas, no lyme, yes lyme, no immunodeficiency, yes immunodeficiency- and all of them well meaning, smart people. So I now follow my instinct, and try to continue with therapies that work, and discontinue ones that don't. It is a crappy position to be in I am not a scientist- but I am a mom. Emerson- you are smart, informed and take care of yourself. I only hope I can raise my daughters to take the reins from me one day, and be really proactive about their health.

Ugh- Nmom- My daughter was on, then off, then on, then off Zoloft this spring. It is SO hard to figure out if it is working, since, like the others said, it can take up to about 3 weeks to see a change. (does anyone know if it is the same time frame when weaning off?) We put dd on, and felt it did nothing after about 2 months, then took her off (our neurologist took the lead here- and we agreed)- but we never did raise the dosage- she was only on 12.5 mg/day. After taking her off, we thought, hmm, maybe it didn't help the ocd- but did it help her mood? So we tried again for about three weeks, with no real change. Then school ended- and we have decided to take her off of EVERYTHING- to see where we are. During this on/off time with zoloft, of course, dd did have strep. So- my advice- With pandas it is close to impossible to figure out if a longer term med works- because (in our case, anyway) PANDAS is not static. My kids are always either getting worse, or better. It is so hard to know if it is from the zoloft.... I would consider stopping the zoloft, and trying the steroids- see where you are (they are quicker and more dramatic IMHO). After you feel he settles, if you still need it, try the zoloft. It IS best to try one thing at a time- however- we have not followed that when in crisis, and needing improvement right away. Both of my girls have gotten depressed. My little one has said- I want my life back. This is no way to live, I want to die. etc. It is very painful, esp with the little ones, because you contrast that with how carefree they should be. But- take comfort in the fact that, my girls did get better, and so will your baby. It will take time plus medical intervention (steroids, zoloft, whatever). Unfortunately, I do always remind myself that time IS always a part of the equation. Anyway- do any of the moms know- does it take 3 weeks to see a return of symptoms after weaning from zoloft (even if only on it 2 mos)? I may start another thread....