Hello, new to this...

[greeneyes48072]

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...

[EAMom]

Hi greeneyes,

 

Is your son currently on prophylactic antibiotics and if so what antitiotic and dose?

 

If he's not currently on abs did you get a repeat throat culture 3-4 weeks after stopping the abs (from thanksgiving strep infection) to make sure he is negative. Note: if you culture too soon after stopping abs you may get a false neg. culture.

 

I would also rec. you change toothbrushes/toothpaste a few days into antibiotic treatment. (Strep can live on toothbrush and reinfect after the abs are stopped.)

 

My (now) 8 year old dd didn't go into remission until we started Azith. (FEVER in Jan 08; diagnosed March 08; "remission" of symptoms with Azith June 08) which was the 4th antibiotic we tried. She still is on 250 mg/day prophylactically.

 

I would also strongly urge you to check other family members for strep. Our 2nd dd (5 years, non-pandas i hope) is an assymptomatic strep carrier. Both girls were culture positive in March 08. We finally cleared 2nd dd with Azith in April. PANDAS dd does get mild symptoms (tantrums, some tics) when 2nd dd is culture positive (has been positive Oct. 08, Dec 08...lots of strep going around school).

 

It's good you found a doc who knows about PANDAS. What part of the country are you in? This link has some helpful information http://webpediatrics.com/pandas.html. If you are considering IVIG you should have your doc contact Dr. K and follow his protocol (per dose/brand of IVIG) which has a high success rate.

 

IMO it is important to treat these kids (prophylactic antibiotics, or IVIG) and not just treat the symptoms. My concern is if these kids are just treated symptomatically (psych. drugs, anti-tic drugs, which didn't work for you anyway) there long term prognosis isn't so good and they will be afflicted as adults (chronic tics, ocd, anxiety etc.)

 

Good luck and keep us updated!

[Worried_Dad]

Hi, greeneyes48072, and welcome!

 

Wow, you did the right thing by doing online research. It took us many months - and MANY doc and specialist visits - to get a diagnosis. Our son's illness started with polyarthritis, then tremors and muscle weakness followed by seizure-like twitching episodes that evolved into motor tics. He was originally diagnosed with acute rheumatic fever with Sydenham's chorea, now with PANDAS instead of SC.

 

Has the doc put your son on antibiotic prophylaxis to prevent further strep infections? From our own painful experience, this is key... and I'd recommend something stronger than just amoxil, which didn't work well for our son. Our local docs advised us to discontinue the prophylactic abx because it supposedly had "no proven benefit" for PANDAS... and within 2 months, our son had a violent explosion of PANDAS symptoms, far worse than the original. So keep your son on something like augmentin or omnicef or zithromax or keflex or something stronger than amoxil if you can.

 

And when you mentioned that tenex and klonopin made things worse... again, from our own painful experience, I'd advise to be very cautious about any psych meds. A local psychiatrist prescribed ativan (a benzo like klonopin) and zyprexa (a neuroleptic) for our son, and they absolutely put him over the edge. We didn't realize how badly these meds were exacerbating his symptoms until Dr. Kovacevic (PANDAS expert in Chicago whom you'll see mentioned on this site a lot) warned us about the dangers and advised us to taper off of them. Within 2 days of discontinuing those meds, our son was immensely calmer and more rational.

 

I have seen articles that indicate that SSRIs can be helpful for PANDAS kids, but in extremely small doses; normal doses make things worse. So if your doc wants to try something like that, make sure he starts with the lowest possible dose and increases very, very slowly to reach an optimum level.

 

If your son reaches a point where PANDAS is really ruining his life (like was the case for our son), you might consider IVIG or plasmapheresis. These are serious procedures, but they've been shown to help kids with severe PANDAS when nothing else was working. Dr. K has good info about PANDAS and treatment options on his web site ( http://www.webpediatrics.com/pandas.html ) and responds promptly to e-mails.

 

I hope your son heals quickly and fully, and that you get the answers you need from your docs very soon. Best of luck... and if any doc tells you that "PANDAS doesn't exist," look for a new doctor!

 

 

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...

[greeneyes48072]

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...

[amy s]

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...

 

 

Hi green,

It sounds like you are doing great with getting online research and finding a doctor who you can work with. I just wanted to chime in and agree about the psych med issue. For my dd, they did very little for her...and I'm not sure if they made some of her symptoms worse or not, because it can be hard to know what is pandas and what is psych meds. for the most part I blamed everything on the pandas but after reading some stories on here I have wondered if some of it was not from the psych meds.

 

It sounds promising that you already have a doctor and some sort of a plan and antibiotics for your child! Some of the parents desperately try to get antibiotics for their child and are not able to. For us, it was 6-7 months before I even knew about pandas but as soon as I did was able to obtain antibiotics (in retrospect I don't think it worked for her- it was penicillin vk, by the way). I don't know anything about tics, so I can't answer your questions regarding any of that. My dd presented with severe ocd and other psych issues, not tics. Good luck to you and I hope your child's tics do wane soon.

[EAMom]

Bactrim is an interesting antibiotic choice. Yours is the first PANDAS child I have heard of being on it. I'm not sure about it being used long term? Perhaps something to look into? I think Pen and Azith. are considered pretty safe long term. There are also a few kids on Keflex (a cephalosporin) long term.

 

When we finally acheived remission of severe PANDAS symptoms with Azith, tics were the symptom that took longest to go away. OCD/mood improved after about 1-2 weeks on Azith. Tics (which were not that much of an issue, they were pretty mild for dd) took closer to 6 weeks to go away. However, I don't know if this pattern hold true for other PANDAS kids.

[greeneyes48072]

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!

[Darla]

The neuro I saw on wensday suggested Bactrim as well. hmm. My son is allergic to amox and I suspected maybe even azith b/c towards the end of the dose for his strep last week, I noticed swelling in his cheeks and he complained of itchy spots on his body. I heard that Bactrim is very strong. Don't know much about it. She said he would have to take it 3 times a day for 6 months. Why is there a time table? What happens after you stop? Why stop? Im just a little confused as to the reasons around it all. I know it's so they don't get sick, but is it also sort of a test to see their behaviors? Is that the main reason for stopping? Or you just can't be on it for that long. What do you do after that? Sorry million questions.

[peglem]

I was curious, so I looked up Bactrim. Found this:

http://www.rxlist.com/bactrim-drug.htm

 

You may be especially interested in page 4. It says it is not useful for GABHS infections. But also, it cautions that it can cause folic acid deficiency, so I'd supplement with that while on bactrim.

[Darla]

Thank you for that info! I just finished reading it. I do have issue with the fact that it states it does not work agains GABHS and also they have no studies as to long term side effects. This seems to be very strong and I am thinking. Mayb I could approach this on a less potent level. He seemed to show improvement on the azith although showed some smalls signs of allergic reaction. He is also allergic to amox. What could he take and maybe start off with it at the low end but still being effective? I am not comfortable yet with the idea of starting him on antibiotics.... im just not there yet, and with this information, It makes me not want to. What is the norm for the type of antiboitics? And which one seems to work best? If there is such a thing?

 

 

 

quote name='peglem' date='Jan 9 2009, 11:06 AM' post='29243']

I was curious, so I looked up Bactrim. Found this:

http://www.rxlist.com/bactrim-drug.htm

 

You may be especially interested in page 4. It says it is not useful for GABHS infections. But also, it cautions that it can cause folic acid deficiency, so I'd supplement with that while on bactrim.

[colleenrn]

Darla,

Have you ever tried a cephalosporin for your child? They are effective against strep and can be taken prophylactically. My daughter took Keflex for about a year.

Colleen

[Darla]

Thanks! No we haven't. My son is allergic to amox so this seems like the obvious choice. Thank God for you guys in this forum! Did your daughter have any side effects, or anything I should know about before giving it to him? How much did she take, if you don't mind me asking.

 

thanks again!

darla

 

 

Darla,

Have you ever tried a cephalosporin for your child? They are effective against strep and can be taken prophylactically. My daughter took Keflex for about a year.

Colleen

[Darla]

sorry one more thing, why only take anitibiotics for 6 mo or a year?? What do you do after that?

 

 

Thanks! No we haven't. My son is allergic to amox so this seems like the obvious choice. Thank God for you guys in this forum! Did your daughter have any side effects, or anything I should know about before giving it to him? How much did she take, if you don't mind me asking.

 

thanks again!

darla

 

 

Darla,

Have you ever tried a cephalosporin for your child? They are effective against strep and can be taken prophylactically. My daughter took Keflex for about a year.

Colleen

[EAMom]

You are right, PANDAS kids need to be on abs long term (years), not just 6-12mo. PANDAS isn't just going to "go away" in a year. If you listen to the DAN Swedo lecture (that Peggysue recently posted) Swedo admits it's not really known how long these kids need to be on abs. She used rheumatic fever prophylaxis as another example...used to be 'till 18, then 25, now they recommended lifelong abs.

 

The exception to this long term ab (years, at least through adolescence IMO) treatment would be if your child were to receive IVIG. I believe Dr. K recommends abs for 1 year post IVIG. On the other hand, if you do IVIG and your child if doing great on abs at 1 year post treatment, I admit I would be a little nervous about messing with things and taking him off abs. Everyone responds differently and there are no guarentees that your child is not going to be among the small percentage that has problems post IVIG.

 

Another interesting point about the various antibiotics...some leave you more room for error (if you are late or miss a dose). Swedo talked about how with Pen you need to give it exactly every 12 hours...if you are late then you are essentially unprotected for several days. Azith has a long 1/2 life so you don't have this same problem. I don't know about cephalosporins compare in this regard.

[colleenrn]

Darla,

I am sorry, I should have been more clear. My daughter was diagnosed at 5 1/2 with PANDAS and she is now 12. We did Penicillin prophylactically for a while, then Augmentin for about 6 months, a few years ago she took Keflex (a cephalosporin) for almost a year, and now she is taking Zithromax daily. It was trial and error with her b/c I was basically trying to figure this out on my own. Until I joined this forum, I had never had contact with anyone dealing with PANDAS, except for the one time we took her to see Swedo and that was in the very beginning. Knowing what I know now, and if I could rewind 6 years, I would have put her on antibiotics prophylactically, no doubt whatsoever. I am going that route now with my younger children.

Colleen