Kayanne

My daughter has just PANDAS with no other neurological diagnosis. For original research studies, many times the criteria needs to be tighter. My Daughter didn't speak. Probably more because it was compulsive. We don't press her for details, but one of the few times she explained that she thought she wasn't allowed to speak, and she had a feeling in her throat. I also suspect she was in real cognitive distress - thus not really even able to form her words or thoughts.

Yes, this idea has been posted before. And I agree it is very interesting. For me, personally, I consider IVIG safer than intentionally infecting yourself or child with worms. IVIG is a treatment given for many disorders - usually at lower doses than for PANDAS, and I don't think it is very risky. I think they are just beginning the journey of symbiotic parasites...so I think that perhaps a few more positive clinical trials, and a some more years of getting it right would have to pass for me to even consider it. ...just my 2 cents -- Obviously, every family has to consider its own situation and then decide.

I wanted to say that if he is able to tell you about it, he may be on the healing side of it, and not the increase end of an exacerbation. But that is just my gut feeling...I am by no means an expert. I am pretty sure that others on the board who know so much more about OCD will chime in. Emotional lability was one of my daughter's major symptoms...I now believe that it was not a separate thing from the OCD, rather the OCD caused her to get so upset...she would cry for hours -- NEVER being able to tell us why. Now when she gets very upset - If she can articulate why, then I breath a sigh of relief. I'm just guessing that if your Son's OCD was still really bad, he would still be holding his secret in... I have to say this is one of my biggest fears, that she is hiding OCD, and silently suffering. However, for the most part her life is not affected at all by any traces of OCD.

Welcome to the forum. I'm sorry you're here, but it is a great resource, so I am glad you found us. Thank you for taking the time to share your story, and I am praying for all of our childrens' continued healing.

Yes, I agree. RF of the Brain seems to be what most people respond positively to. Also, like Vicki said, those who want to know more will ask. Good luck.

I fully agree with all of the other posters...this can get better and stay better if you are more proactive. Your Child may heal, and you may never see another exacerbation...but if you do your child's "baseline" may change. I also wanted to let you know that your child may qualify for the new IVIG study. http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_11-M-0058.html@pandas Perhaps bring this to your ped's attention, they may be willing to learn more about it if there is ongoing research. I'm sorry you are going through this.

I have also read on a few websites that OLE makes some antibiotics less effective....I could never find more info on that.

The only time we had to go through hoops was when my PANDAS daughter was at her worst, and she was taking clindamycin. The liquid was impossible to take, so we changed to capsules. I would coat a spoon with chocolate pudding, carefully put in the powder, and then use another spoon to carefully drop a dollop of pudding to cover the powder...it made it tolerable. It was a 3 spoon process. The first spoonful was regular pudding, the second was the medicine pudding, and the 3rd was regular pudding...we were happy to get the calories in her too. When we switched to pen vk as a prophylaxis, I thought that stuff was nasty -- so at first we rewarded her with M&Ms...until she got used to it. Currently, we give liquid Omnicef...no problems. When she used to ask a lot about how long she needs to take this, I would just tell her we don't know for sure, but probably until she is around 20yrs old. For her, she just needs an answer, otherwise she would think too much about it.

I did opt to have my children get their flu shots (not the mist) in the fall. After speaking to my daughter's PANDAS doctor, and our pediatrician, I felt it was more beneficial to try to prevent a flu illness in my house. I was told the antibody load from actually being sick was much more than the vaccine...so that was one of our determining factors. The other two factors that I considered, were that my daughter seems to only react to strep (not viruses) and she was well on her path to healing. We didn't see any negative results from the flu shot.

I've used Tamiflu for my PANDAS daughter. It was wonderful for stopping the flu, and we didn't see any increase in PANDAS symptoms. Although, I should add that we have not seen her have an increase of PANDAS when we have viral issues -- at least not enough to consider increasing antibiotics or trying prednisone.

My daughter still tells us that even though she is done, she doesn't feel like she is. As soon as she gets up again, she needs to go. This comes and goes.

I don't have any advice....just wanted to say I'm sending prayers and thoughts your way.

My daughter was 6 years old when she had her first recognizable episode. Have you ever been to www.pandasnetwork.org ? Under the "Parent's Research" tab, there is a chart called "200 PANDAS Case Summary". Of course the ages vary a lot, but I think the majority of them are a bit younger than 11 -- Also, I'm not saying that this is at all a comprehensive chart...I just thought you might like to see it.

Both times that my daughter took pred the first week was rough. Definitely more rages and anger. By the second week (dose cut in half) things started to calm down.

I agree with Vicki about the steroids. However, if there is no real research on it - you can't just put in an anecdotal observation. Thank you so much for doing this!

Never heard of that before...not talking...as a form of OCD? How old is he now? That must be so tough. It shows how there can be such extremes! And hear I can't get my child to be quiet. It happened to my daughter too. She told us she thought she wasn't allowed to talk...and then something about a feeling in her throat.

Really great, thanks.

Some of us have neither of those luxuries. Additionally, the PANDAS dr's are all giving it their best guess, too - a better educated guess than most everyone else, but a guess nevertheless & some here have valuable experience based on the failures of the PANDAS experts. I am very happy for you to have a child so long in remission, but there's a lot of suffering people here with kids whose cases are more complex than straight-forward PANDAS (if there is such a thing) & your words seem surprisingly antagonistic from this side of the screen. Why post here at all if that's your attitude? Life's difficult enough already... I just wanted to raise my hand and say my daughter's case is straight-forward PANDAS, and adding a parenthetical such as this is not helpful. I'm sorry your child is suffering right now, so I get your frustration. Best of Luck.

Dr. Geller is recommending IVIG?

Prednisone can effect the Cunningham test, but not antibiotics. You said he "has been" on augmentin, biaxin and omnicef...was he on the antibiotics at the same time as the prednisone taper? Is he on antibiotics now? I think that prednisone seems to be more effective as an early treatment. If your son has had this for a long time, you may not see the same results as others. Did Dr. T also test for Lyme?

So do you think a little higher than typical prophylaxis dose would be okay, or do you think just going to full strength is better for preventing strep? I agree there may be something about PANDAS kids catching strep more. Pen vk (as a prophylaxis) was not effective for my daughter...we think all it managed to do was create false negatives. Yet, second to Pen G, it is considered the gold standard for RF... There is no real guideline on using Omnicef as a prophylaxis. I have asked several doctors...what do you use if there is a penicillin allergy? The best answer I got was from an Allergist/Immunologist who said that for kids with chronic ear infections, he will continue on full strength for about a month, then drop to a half dose. That's what Dr. L and We decided to do...Since August she has been on 150mg daily with strep exposure in the classroom...with only very slight increase in OCD and ADD. But I'm not sure casual classroom exposure is enough...now her siblings getting it, that set things in motion the 2nd time. My next step is getting my boys' tonsils out too.

For my daughter's 2nd PANDAS exacerbation, she took Omnicef. It was 150mg 2x/day. The ped who originally prescribed it said that for strep, she felt breaking it up into 2 doses was better...just throwing that out there. I know how difficult it can be to get the probiotics in if antibiotics are needed 2x/day. She is currently on 150mg once a day, and will be on that indefinitely to prevent strep. I am curious about the enhansa. Is this a supplement that you cannot take continuously? Does anyone else have experience with a different brand of curcurmin?

What dose zith do you think would be good just as a prophylaxis? I'm thinking 100 mg daily would be okay. Couldn't it be considered the same as a weekly 750mg or 500mg dose? Thanks

When my daughter was about 50 lbs, she was prescribed: Week 1 - 15mg 2x/day Week 2 - 7.5mg 2x/day Week 3 - 7.5mg 1x/day Weeks 4 and 5 - 7.5mg every other day

We saw a good response on antibiotics twice. Within a week we could see improvement. We also had great response to prednisone twice. The first time, we saw a slow continual progress (about 75% improved) for almost a month, and then at the very end, she suddenly went from 75% to about 98% - it seemed pretty miraculous. The second time she was not as severe, and we saw complete remission of symptoms by the end of the second week on prednisone.