greeneyes48072

Hi guys, I'm so sorry to hear how hard things still are. I don't know who you have seen locally yet, but I just heard that there may be a local dr out of Farmington Hills that has treated PANDAS first hand. She wasn't in today, but I will be calling back on Monday to find out for sure. In my short experience with this so far, they claim they can help and come to find out once you get to an appointment, they have only "heard" about it. She works out of the Michigan Institute for Neurological Disorders. An Irene McCormick. I hope to hear soon that both your kids (pmoreno and worrieddad) are making the recovery you had hoped for going into the IVIG...

Thank you so much for your input and help. The steroid burst actually did work (85% reduction) when we did it over the holiday. We were just trying to achieve a longer lasting effect by keeping him on a low dose once a day for a couple weeks. Worked great the first week. He also seems to have a cold, so that may be part of it too. Thanks again!

It's not that he was scared to speak. He would try and couldn't. He could breath no problem, just couldn't get his vocal cords to work. Seems to be tic related, because he also has a bunch of facial tics he didn't have before either. I would say that Chicago is about a 4.5 hour drive from here...and yeah, I lost it at work (he was at school). Even made my boss cry. Once we got to the ER he could talk on and off, then the problem faded, but the new facial tics remain. I did send an email before this to Dr K, but I don't think I included enough of his histroy since his response didn't really answer my question about the clarith. I plan to kind of start over at go, stop the steroid, stop the clarith and put him on a full dose of azith and see if there is any change. I will also see what my local dr thinks of us making a trip to chicago, or if he would rather do a phone consult himself-dr to dr...

He lost the ability to speak today. It lasted most the afternoon. We had to take him to the ER just in case. They looked at us like we were crazy, yet again. His regular peds dr called and told the ER he feels it is just a flare up of his symptoms. Told us to still stay the course with the steroid and clarith until friday. I plan to ask him to stop the steroid, stop the clarith and give him a full dose of azith for maybe 10 days, with that being the only thing he is on, and see what happens. I'm thinking it may be time for us to drive out to Chicago...

My son is allergic to Rosephin, which I see is related to Keflex. Outstanding, we are left with almost no options as far as the antibiotic goes...

As I posted last week, my son had an allergic reaction to the Bactrim and was switched to the Clarith. His tics have gotten worse again and seem to be back up to almost 100%. He is currently on 4mg of methylprednisolone and the clarith-250mg. I don't know if the steroid has lost it's effectiveness just due to time, if there is an interaction between the steroid and the clarith or if it is the clarith alone causing the increase in tics. The Dr wants to stay the course for 4 more days and see if there are any changes either way. I'm wondering if we should try keflex instead of the clarith or even azith (I read that either can increase side effects if taken while on a steroid-which again makes me wonder about the possibility of an interaction causing the tics). Does anyone have any thoughts? or any feelings on keflex? Thanks so much!

...scratch that, he started the clarith Wednesday night...sorry brain is fried these days....

There is no reason that they could not have given him the Azith (that I know of). It was not his regular Dr. The regular Dr comes back Monday and I will be giving him a call. I had reduced the steroid pill to 2mg/day starting Tuesday. He started the clarith Thursday night. His ticks were worse, and there was a new vocal one. I know I can't keep him on the steroid much longer, so I was hoping the Clarith would help, but no help the first day. I plan to ask the Dr to go for the azith since that has worked so well for others...

We shall see. I'm hoping the clarith will help with his tics too. I see that azith has helped some with the symptoms of PANDAS, so just maybe the same will hold true...

The other Dr put him on clarithromycin instead of Azithromycin....I wonder if it will help the same as azith, since they are in the same family...

My son had two bouts of trouble breathing this week. Once Sunday and again today. The Dr is still out of town so I called the pharmacist. Apparently it is a hypersensitivity reaction, which it does say on the info, but it did not say that this meant it is a type of allergic reaction, which I didn't realize. So I have to pull him off the Bactrim. Dr doesn't get back until Monday. I sure hope he doesn't get exposed to anything since he won't be on an antibiotic for the next five days. Darla I will still ask the Dr why he chose the Bactrim in the first place and let you know...

You guys probably already know about this site, but just in case: http://clinicaltrials.gov/ct2/results?term=PANDAS

That's interesting. Since we're new with this, the Dr hasn't checked anything yet. Seems like there is a lot we could look at, but I don't want to throw the net too wide yet. I'm not sure how much I've posted about myself, but I've been wondering through all this if I was a PANDAS kid myself. I still get strep all the time. One year had it five times. I was in the hospital at age 4 because I was acting so strange, but my mom can't remember anything in detail. I have a lot of OCD traights, though I don't think I'd have enough for a DSM-IV classification. I do have trichotellomania, which started about the same age my son is now. Even in the summer I have low vitimin D. I love cheese, drink lots of milk, exersice alot, so the dr thinks it's strange it's low. I've been taking a supplement for it, but I don't know how it's helped with my levels....I've been focused on my son and never went back for any of my follow-up blood work...

Fingers crossed! Can't wait to hear how it goes...

No problem. He is out of town this week. I am due to check in with him on the 19th. I will let you know...

Wow, just caught the last couple posts here....In regards to what Dr K said about an autoimmune disorder being "fully developed". Can anyone tell me how you know when it gets to that point? Are you already there if symptoms are appearing? If anyone happends to know...

Thank you for the info...

I looked at the article after my last post. It indicated that Bactrim will not work against a current infection of strep, but didn't mention it's effectiveness as a preventative measure....hmmm. Still going to check with the Dr...

Hmmm, I will have to speak to my Dr more about the Bactrim, if it cannot fight strep. My son's is only a once daily dose. Just as my son has had a lot of cases of strep over the years, so have I. I am allergic to Penn and Sulfa, so Bactrim was never an option for me, so I don't have a lot of exerience with it. I just wanted to make a note about the Keflex. A year or so back my dermatalogist wrote me out an Rx for Keflex. The Pharmacy was very concerned. They told me that a high percentage of people who are allergic to Penn, are also allergic to Keflex. I didn't take it, so I can't tell you if it held true for me, I wasn't up for finding out first hand.

How much Ibuprofen were you using? I wasn't seeing any effect with motrin, but it was the OTC dose. I had planned on asking my Dr about naproxen, but hadn't yet. Does anyone know anything about budesonide? I read that it is used in place of steroids like prednisone, since it has less side effects...

Well my son just started a second round of steroids. He is also on a daily dose of Bactrim. His first round of steroids was a burst, first day was Tuesday 12-23 and we had not seen improvement until that Saturday. He finished the burst that Sunday. Then on Thursday the 1st, his tics started flaring up again, but not all the way back to their pre-burst level. On Tues the 6th we started with the same steroid, but only once a day, in the morning at 4mg. I know he can't be on it too long for the sake of his pituitary and adrenal glands. By that same night the tics reduced dramatically. I would say its now at about a 70-80% reduction. I will update again later, once we come of the steroid again and see how it goes afterwards...

Not sure why he went with the bactrim, he originally said most likely azith (he is allergic to pen). When I read up on the steroid pack, it mentioned some interaction with azith, so I'm guessing that may be why. There is hyper activity as well, but that comes and goes. Some hostility too, but that may be from the steroid burst. The main problem, and most debilitating is the tics. I tried the 5htp, but it does not seem to help, maybe even make the tics worse. I'm really thinking anti-inflamatory does the best (but strong, no improvement with something simple like motrin). I'm thinking that is why the steroid worked so well. I'm going to ask him about a low does, once a day steroid instead of the burst tomorrow. I will also be asking him if naproxen acts on the brain at all, in case that is another option....thanks for responses guys!

Thank you for your response EAMom and Worried Dad. Yes, he is now on a daily dose of Bactrim(allergy to Penc). Not sure what the mg is, for some reason it is not listed on the Rx. He had the Azith when he first had the strep, and then the new dr put him on the bactrim just a couple weeks ago. He also has all the info on dr K, in the event he wants to speak with him. He wants to wait and see if the tics wane on their own over the next month or two, but we still need to try and find something to reduce the tics enough for school. Like I said, the steroid burst did work, but the tics are starting to gain strength again. We are done with the benzo's or anything else typically used for MH, and our dr completely agrees. I plan to keep him on the antibiotic long term, and only consider IVIG if the tics do not fade like the dr expects. I worry that may not happen, but he has treated a lot of SC in his time (he's been around quite awhile) and he firmly believes they will wane...my fingers are crossed and I will be keeping an eye on this forum for any natural ways to reduce tics as well (aside from the steroid)...oh, and we're in Michigan...

I'm new as well. I see you didn't have any responses yet. I found a lot of info on the web. Here are some of the sites I found best: http://www.adhd.com.au/PANDAS.htm http://webpediatrics.com/pandas.html http://webpediatrics.com/pandasclinicalcases.html http://intramural.nimh.nih.gov/pdn/web.htm From what I've read, a lot of the typical treatment for the same symptoms but in nonPANDAS kids don't work as they should, or actually make it worse. That is what I've found with my son. His was very obviously related to strep, so I just needed to find the right doctor. It took some time and frustration, the others told us we were crazy and PANDAS was not real. Sounds like you need to first find out if PANDAS is even the case for you. After trying two different meds I pushed for the steroid burst. He started it the tuesday of last week, and showed improvement since Saturday. It is nice to see him have a break from it all, but I know with the steroid burst it is only temporary, but since it did show improvement it even more proved his is PANDAS. It could be a start for you, but keep in mind, I have also read that some PANDAS kids don't show improvement after, but it there is, you know to start going down the PANDAS path. My son is also on a daily antibiotic, to keep bacteria/strep away. We are only about five weeks into this (though I think it started a year ago, but the symptoms after the strep were too minor to detect). I plan first to see about a low dose (not burst) short term use of steroids, to try and give him a longer break, but short enough to where the steroids won't affect the pituitary or adrenal glands. Our Dr is not ready to jump to trying IVIG, he said there are a lot of problems associated with it's use. I've read that with some kids the symptoms will fade in 5-12 weeks, if that's the case with our son, our primary treatment will be to keep him on the daily antibiotic to avoid another incident and further damage. If they don't fade, then we keep on going. I did read somewhere that tryptophan has been helpful with tics, but I still need to research that one, it may or maynot have been related to PANDAS, and as we've seen with out son, anything that helps with normal tics, does not work with him. I'm also going to do further research on Sydenham's Chorea, since it is very similar and see what kind of treatment they have done for that. Since the steroid burst helped, it seems to me the problem is the inflamation of the basil ganglia, so treatment should be directed at reducing that inflamation....

Hello, new to this, but wanting to utilize every avenue I can. My son is 7. He had strep over thanksgiving and within three days suddenly had tics after never having any. Multiple local doctors told us nothing, and started treating it like tourettes, I found out about PANDAS online, investigated it and I am sure that is what he has. I actually had to "shop around" to find a dr who had a clue. The first time I met with him he did give him a diagnosis of PANDAS. He went on to tell me about a similar disorder called Sydenham's Chorea. I almost cried to have found someone who at least believed in it and had experience with something similar. We are five weeks in now. He started with vocal tics and as the days past has also developed motor tics as well. One of the prior Dr's put him on Tenex, which made it way worse. Our current dr tried klonopin, which also made it much worse. He indicated that the tics should fade in time, but that it could be months. He is trying currently to get them minimized enough for him to get through the school day. We just finally finished a six day steroid burst on Sunday. We had started it last Tuesday. No change by Friday, but by Saturday there was a dramatic decrease in all tics. Finally he got a break from them. They are still there, but not nearly as bad. From what I've read, the improvement will only be temporary, but it's a start......any info I can share or that you would have that would be useful would be great...