mama2alex

SFMom, You may have told me before, but I can't remember - what's the homeopathic antiviral? Our son reacts to viruses as well.

Great! Thanks for checking. I'll edit my email a bit and send it anyway, just so they know someone cares about that particular content.

Thanks Kim! I sent this to a friend whose mother-in-law has MS. I'm hopeful they'll look into it.

You could even start with 200mg 3-4x a day. Thanks! If we don't get results in a day or two, we'll up it and see if that works.

She's on it. But won't get a response until Mon or Tues, I'm guessing. Will definitely let you know what I hear. Great! Thank you. If a bunch of send emails this week, maybe we can get it on their radar.

I agree with getting an immunology workup - I think any child suspected of having PANDAS should have one. Also, the immune system is definitely what keeps yeast at normal levels in most people. Sometimes (possibly always??) underlying the immune system issues is heavy metal toxicity - have you had them checked for this? My son has had yeast issues since he was a baby as far as I can tell (we discovered it through at DAN doc at age 3). How old is your daughter? Is she taking probiotics or medications for it? Also, why is your doctor recommending antibiotics? Does he/she think your daughter has a current strep infection? I don't think a high Cam Kinase score necessarily means a current infection, but others can correct me if I'm wrong about that.

Has anyone else had success with this? We all have colds and our son is much worse in terms of PANDAS symptoms (he only has a sniffle and slight cough, although I am pretty sick). He's pretty scared, especially at bedtime, and waking up having us check the house 2 or 3 times a night, so we're all exhausted. I am going to start with 200mg twice a day - he is 63 lbs. Does that dose sound ok? He is scheduled for IVIG in 2 1/2 weeks - just trying to make it though until we (HOPEFULLY) get some long-term relief.

I just wanted to bump this to the top, especially since there's been a lot of discussion and excitement about advocacy on another thread. I have my email queued up to send out tomorrow to the executive director of the IOCDF. I will do my best to get to the bottom of this and see if they are willing to add info on PANDAS. I hope everyone else will send an email to encourage them as well. Laura, Please let us know what your friend who's involved with the foundation says. Thanks! Jennifer

I considered asking them to check titers, but our ds has put up with too many needle pokes already. Also, the immunologist at Stanford told us that since all his Ig's are within normal range (only a deficiency to s. pneumococcal bacteria), he should be able to mount a response.

Doug, Our son got the H1N1 vaccine 9 days ago and our ped (and the immunologist) told us only one shot is necessary for H1N1 - I wonder why your doctor thinks a 2nd shot is required? Maybe they are just doing it to "make sure." I think your daughter probably already has immunity. I would skip the second one.

Has anyone looked at the Saving Sammy Facebook page lately? (not Beth's personal page). If you become a "fan" you can read all the posts that are going up. It seems to be just starting to take on a life of it's own. There are a lot of parents out there who are trying to get the word out to local news and national news outlets, and I saw one mom who posted asking Beth to please not... Okay, I just went back to look at the post I was about to refer to, and I couldn't find it. Has anyone else had this experience? The poster was asking Beth to please not suggest tests such as ASO to "rule out" PANDAS because there isn't really a test that rules it out. Now I can't find the post. Hmmm... Also, there was a mom who posted that some show called Mystery Diagnosis (or something like that) is interested in PANDAS, but her family can't put their daughter on a national stage. I now can't find this post either. Maybe I'm doing something wrong?? Usually, I'm fairly good at navigating web sites, but I'm no Facebook expert.

Here are two email addresses for the IOCDF: Jeff Szymanski, Executive Director: jszymanski@ocfoundation.org Michael Spigler, Program Director: mspigler@ocfoundation.org I'm going to start with these two and see what they say. I am suggesting that they add PANDAS info, including a link to PANDAS Network and SavingSammy website, at the top of the "OCD in Children and Teens" section, which is under "About OCD" on the home page - a very logic place to find it. I'm also going to mention the fact that they used to have a little PANDAS info (though not enough) on their old web site, and the PANDAS community is wondering why they removed it.

Peggy, Thanks for bringing this to everyone's attention! And Laura, thanks for contacting your friend to find out what happened. I hope everyone on this site will send an email (whatever length you have time for) as the more emails they receive, the more urgent it will feel to include PANDAS info on their website. This would be a fantastic way to continue getting the word out about PANDAS. I will send them an email asap. Jennifer

I definitely know what you mean. It just shows how far the PANDAS community has to go in terms of educating doctors that a child is considered "lucky" to have an immune deficiency diagnosis because that means they can get the treatment they need for PANDAS. It's very sad.

Debbie, So glad to hear your daughter is doing better! I hope you only have good news to post from now on. I think you are right not to risk having the cousins over. From what I've read, having the tonsils removed doesn't necessarily stop a person from being a strep carrier. Your number one priority is to protect your daughter's progress, so maybe just a quiet Thanksgiving at home without any guests would be the best way to celebrate.

Judy, I'm so sorry you had this experience! I totally get what you are saying about this doctor - it's beyond frustrating, it's sickening when somone in a position to help a sick child won't even listen. And I completely understand the quicksand feeling. I told my husband about two months into this that I felt like I was standing in the middle of a maze holding my sick child and screaming at the top of my lungs for help, and no one could even hear me. In any event, you can't let this slow you down. I don't think there are any real PANDAS docs in southern CA and your son is too sick for you to try to be the pioneer down there. There's an immunologist up here in northern CA who has treated 2 (I think) kids with IVIG at Lucile Packard (Stanford). We are scheduled for 3 weeks from today thanks to him, but we also have an immune deficiency diagnosis. That said, when I sat with him and laid out all the PANDAS evidence, he agreed to do 2g/kg for the first treatment. I think he has treated a child with IVIG who did not have an immune deficiency as well. It may be worth a trip up here to see him, but he's hard to get in to see, so you'll have a wait. Also, if you do get treatment at Stanford, they have a Ronald McDonald House nearby that you could probably stay at (I think it's free). His name is Dr. Lewis and the number for an appointment is 650-497-8841. If you can affort it, you would ideally go straight to Dr. K, as SFMom suggested. The doctor up here is a possiblity, but it's not guaranteed that he'll help you. I think he's just beginning to "get it" just a little bit, but I wouldn't say he's completely on board quite yet. You can PM for more info on our experience with him. You will get there - don't let this guy slow you down. Big hugs, Jennifer

Judy, I am so touched that you took the time to write this. This is exactly what I needed today - someone who understands! I appreciated everything you had to say, but pulled out the part above because this is exactly the attitude I suspect the teacher and administration at our school has toward our son. 'He's got a bad attitude and he's playing us.' I need to learn to accept it for now and you're right, he would probably be better off at a private school. I was actually planning to tour some this Fall, but all that fell by the way side for obvious reasons. He was supposed to be tested for the gifted program in our district last week, but he was too afraid to stay there without me, so we left. I did meet with his teacher the first day of school and explained PANDAS, sensory integration disorder, auditory processing disorder, etc, and then my husband and I went in a few weeks later to meet with her. I sent her the Today Show clip, gave her the School Nurse article, and offered her a copy of Saving Sammy (which she sort of ignored, so I took it with me when we left). I've also met with the principal and explained everything. I think you're right in this case, they really are mostly upset that they are losing money every day he's not there. I think another problem is that he's been holding it together fairly well in her classroom. He can't stay at afterschool care, I can't drop him off at school (my friend does it) and he doesn't eat at school (he's gained 4 pounds in a month of being homeschooled), but none of this affects the teacher, so I think in her mind, there's nothing really that wrong. Once we have him back at school and through IVIG, I will have more energy to continue trying to educate her. I'll look for the handouts you mentioned and maybe I'll give her Saving Sammy as a holiday gift. Thank you so much for your post! I feel so lucky to have found this group of parents - not sure how I would have made it through the last few months without it.

Good point! You think the teacher has PANDAS?

Thanks for responding. I should probably talk to her about this. I think she had seen him do better work in class and was just unhappy with the level of work we sent in. My whole focus right now is on getting him well, and this just doesn't fit in with the school's priorities. Honestly, I'm not sure they believe (or understand) a word we're saying, either about PANDAS or immune deficiency. Does she know that PANDAS kids have a hard time writing? The uncooperative behavior is probably PANDAS too.

Does anyone know what's going on with this organization? I'm curious. I've looked at their updated site, but there's no information on who's running it, who's on the Board of Directors, etc. I saw a post on Facebook about PANDAS Foundation Atlanta, but nothing else.

Ours took 17 days back in September. Longer for the anti-neuronal antibodies results. Good luck. Hope you get them back soon. I know it's tough to wait!

You are so lucky to have such a supportive school and teacher. I am feeling very sad today because our school has not been that supportive. We took our son out for a few weeks due to his immune deficiency. The first thing I got from the school was a somewhat hysterical call from the principal saying the district wouldn't allow us to home school him temporarily. Next I waited a week to get an answer as to whether they would allow it. I finally had to go in to the district office and ask because no one was returning my calls. Then I had to sit with a skeptical assistant superintendant who told me she would approve it, but I had to admit that my child looks fine. Then we waited another week to get a home teacher who continually talks to me about how all her other home school students are too sick to leave the house and are happy to see her when she comes over (my son has been pretty uncooperative with her). The teacher started sending home work once the district approved, and she emails with me, but she has not asked about my son once in 4 weeks and has sent some fairly curt comments about some of the work we've turned in (writing). Today I got a call from our pediatrician saying the school superintendant called her to ask why he can't go to school, but can go to soccer games. What they don't know is that he wanted to quit soccer, which he's played for 4 years, at the beginning of the season, and we had to work incredibly hard just to get him to participate this year. We wanted to protect our son from illness, but we didn't want to put him in a bubble and allow him to withdraw from everything in his life. Sorry for venting, but this has put extra pressure and stress on me that I just didn't need. Has anyone else had an experience like this with their school?

This is great news! So glad to hear you are seeing good results. We tried upping the Zith to 375mg per day and have seen nothing. I can't understand why, unless we've already knocked out the strep and he just has residual inflammation in his brain. In any event, we are doing IVIG in 3 weeks and we'll see if that helps him. He had a great response to prednisone, so I do believe he has PANDAS and hope the IVIG will help. gIf we see results with the IVIG, we'll have to figure out what would be the best long term dose of abx. I think my son had elevated HHV-6 a few years ago, but I'll have to go back and look at the labs. They didn't do anything about it at the time, but maybe I'll talk to our DAN doc about retesting and potentially trying Valtrex. Please keep us posted on how this works out. Thanks again for posting the update!

Wendy, Thanks for posting the update. Glad you are back and it went well! I didn't know Corsa's symptoms were getting worse the last few weeks before the 2nd IVIG. I'm so glad to hear that you saw such great results again. Jennifer

DCMom, I guess what we're doing is technically "homebound" because we are still enrolled in the school and it is temporary to protect him from infections. I don't know how cooperative/understanding your school is, but several peope have mentioned that kids with leukemia often need homebound for a time, and I imagine this can be several times a year. No one has said this, but I am starting to wonder if the school district HAS TO allow it if you have a doctor's letter (I mean legally). I think if you have a doctor's letter laying out the situation, you could probably work it out with them to do it "as needed" so that you have some flexibility and she can stay caught up. We started out writing our schedule for the next day every evening, but we were never able to stick to it and it caused more anxiety. So now I just put together the work I'd like him to do in a day, and I let him choose what's next as he goes. We take breaks as needed, and just kind of play it by ear. A tv show is the incentive for finishing - if he doesn't finish his work or doesn't cooperate with the teacher, no tv that day. Our home teacher is okay. My son doesn't like her, but that may just be the state he's in, not any reflection on her. He is finally starting to work with her without too much push back, so it is helpful for me to have a little time to do dishes, etc. She doesn't fully get the PANDAS thing, and is baffled and frustrated by his behavior, but what can you do. For socialization, we have friends over after school for playdates. All our friends know what's going on, so they let me know if anyone in their family is sick and we reschedule. I also tried taking him to our local history museum, but he was too afraid to go into any of the exhibit rooms and it just ended in a meltdown over my (not) buying him a toy at the gift shop. So we're going to wait on the fun outings until he's better. My father-in-law has also been coming up about once a week to help out for a few hours, which gives me a much needed break and allows me to run errands. Hope this helps!