New at this and frustrated...lots of questions

[Williams_Mom]

Hi - I am new here and very happy to have found this forum!

 

I have 3 boys - and my middle one (10 yo - almost 11) has been diagnosed as having PANDAS. He was diagnosed a couple of months ago and I don't know if I am expecting too much, too little or....

 

He is almost finished his second month-long round of prednisone. He is also taking Ceftin (I think - we tried Zithromax but the insurance company would only OK 6 pills at a time which meant that I was at the pharmacy constantly and paying co-pays constantly... ugh)

 

His behavior has changed since he started the pred/ABx - he has stopped washing his hands every 6 minutes (I timed it) but his fear of contaimination is overwhelming... he declares things "ruined" because they may have touched something that might have touched something that might have touched something that might have touched his brother's (or someone else's) "wiener" (ugh - hate that word!) and/or chest. It really is that many "maybes" and it makes the rest of us crazy... we are keeping the hand sanitizer folks in business all by ourselves. He has taken to using hand sanitizer frequently instead of soap and water - even rubbing it on/in his mouth. He spits constantly (this is new and makes me crazy) - on the side of the car, on the carpets, everywhere because he might have touched something (or been in the area). He is very anxious..

 

He told the doctor that he felt "60% better" between pred. rounds but I *know* that that is not true and I think that he said it just because he doesn't want to be percieved as "weird" (even by the doc treating him!)

 

Am I expecting too much that he should be better after the pred.? I don't think that he is much better (he is a little bit better) - just moved on to new things. Will he eventually be "cured"? Or will he live with this his whole life?

 

Lastly, the doc had mentioned IVIG as an option, but said that she didn't think that we were going to have to go that way the last time we saw her. What, exactly, is IVIG? How does it work to help someone with PANDAS? If the 2nd round of pred. doesn't help (and should I wait awhile after he finshes it before feeling like it did/did not work?), what are our options?

 

Lastly, if his day-to-day life is not completely impaired (for instance, he can go to school though he worries about his teacher putting his (the teacher's) wiener on him (my son)) or things that belong to my son, does that mean that his PANDAS is not that bad/severe?

 

I just want my son back like he was....

 

Thanks for any thoughts/advice! I know that I should ask the doc some/all of these questions (and will when we see her in 2 weeks) but I also wanted to ask some BTDT folks.

 

Sally

[Stephanie2]

You are in a great place here at this forum. It will help you to understand where your child is with pandas (how severe, etc.) and you will gain a lot of understanding and resources about pandas. I'm sure many of the experts will chime in here, but if you spend some time reading the posts, as time goes on you will learn a lot more.

 

Some ppl see dramatic differences with antibiotics and steroids, and some only see slight differences. Also, many see the symptoms come back when these treatments stop. Many do have to go on to IVIG or some other type of immunomodulatory therapy (I have both of my kids on spironolactone which helps modulate the immune system and reduces inflammation).

 

It sounds like the spitting is probably a tic (there was another mom here whose child was doing that).

 

You were asking if your child's pandas sounds mild or severe. Maybe it is somewhere in between. Some on here have violent rage issues, some have only motor tics, and anywhere in between. I would say that most kids/families are quite debilitated by this illness. In our case, both my 5 yo and my 2 yo have pandas and they both get quite crazy. My 5 yo has debilitating meltdowns, separation anxiety, OCD, tics. My 2 yo goes nuts and hits, throws things, has wild temper tantrums that can go on for an hour and from what I can tell gets quite fixated on things (OCD). He also gets eye tics, which is the tell-tale symptom in him that lead to this diagnosis (otherwise it would be hard to diagnose a 2 yo). My 5 yo has always been more responsive to treatments, my 2 yo less responsive. Some kids have more OCD, while others have more tic issues. Each kid is different, and you will learn over time where he fits in and what works for him.

 

I wish you the best of luck. I am so sorry that you have received this diagnosis...

 

Stephanie

Hi - I am new here and very happy to have found this forum!

 

I have 3 boys - and my middle one (10 yo - almost 11) has been diagnosed as having PANDAS. He was diagnosed a couple of months ago and I don't know if I am expecting too much, too little or....

 

He is almost finished his second month-long round of prednisone. He is also taking Ceftin (I think - we tried Zithromax but the insurance company would only OK 6 pills at a time which meant that I was at the pharmacy constantly and paying co-pays constantly... ugh)

 

His behavior has changed since he started the pred/ABx - he has stopped washing his hands every 6 minutes (I timed it) but his fear of contaimination is overwhelming... he declares things "ruined" because they may have touched something that might have touched something that might have touched something that might have touched his brother's (or someone else's) "wiener" (ugh - hate that word!) and/or chest. It really is that many "maybes" and it makes the rest of us crazy... we are keeping the hand sanitizer folks in business all by ourselves. He has taken to using hand sanitizer frequently instead of soap and water - even rubbing it on/in his mouth. He spits constantly (this is new and makes me crazy) - on the side of the car, on the carpets, everywhere because he might have touched something (or been in the area). He is very anxious..

 

He told the doctor that he felt "60% better" between pred. rounds but I *know* that that is not true and I think that he said it just because he doesn't want to be percieved as "weird" (even by the doc treating him!)

 

Am I expecting too much that he should be better after the pred.? I don't think that he is much better (he is a little bit better) - just moved on to new things. Will he eventually be "cured"? Or will he live with this his whole life?

 

Lastly, the doc had mentioned IVIG as an option, but said that she didn't think that we were going to have to go that way the last time we saw her. What, exactly, is IVIG? How does it work to help someone with PANDAS? If the 2nd round of pred. doesn't help (and should I wait awhile after he finshes it before feeling like it did/did not work?), what are our options?

 

Lastly, if his day-to-day life is not completely impaired (for instance, he can go to school though he worries about his teacher putting his (the teacher's) wiener on him (my son)) or things that belong to my son, does that mean that his PANDAS is not that bad/severe?

 

I just want my son back like he was....

 

Thanks for any thoughts/advice! I know that I should ask the doc some/all of these questions (and will when we see her in 2 weeks) but I also wanted to ask some BTDT folks.

 

Sally

[matis_mom]

Hi Sally,

So sorry to hear what your son is going through. A lot of things remind me of my own son (now 12). Particullarly the hand washing and worrying about something that "might have" touched something, etc, etc.

 

Awesome that you have a diagnosis and he is on antibiotics. Great that you are working with a doctor that understands PANDAS (it seems that way from your post).

BUT, if you are not seeing significant improvement, there are a couple of things to look at...

 

1) HAVE YOU TESTED EVERYONE IN YOUR FAMILY??? I keep bringing this up. We have found that when PANDAS ds starts sliding back, without fail it is because one (or more) of us has strep. So, do check everyone, and not just once. You might have to go now, and then again in a couple of weeks, etc. Also, ask at school if there were any recent cases of strep.

 

2) Do you have the right antibiotic? We tried different ones until we settled on Augmentin XR. We did try Cefuroxine for a few months, did not seem to make much of a dent. So, ask your doctor about trying something different/stronger.

 

I think those 2 things are what you need to concentrate on right now. And then worry about IVIG if he needs it.

 

Also, about the handwashing thing, do check out a book called "What to do when your child has OCD" (I dont have the author right now), and become familiar with the way OCD works, and how you and your family can make it less strong. There is also a good workbook for children that helps explain what is going on and develop strategies to cope (if only I could find it right now...) Basically, you need to work together at weakening the OCD's hold on your son.

But you can work on that after he is on the right treatment. It looks like you are off to a good start, but it seems to me from your post something is amiss (either you have someone in your family with strep, or the antibiotic is not the right one/not strong enough)

 

Hope this helps! Keep asking and reading other posts, I have found it very helpful in our journey to recovery!

 

Just to leave you with a bit of hope, my son is doing very well now. He still has anxiety about certain things, but the handwashing is nowhere near as bad as it was, and he can do things that he couldn't before we started treatment (we wouldn't touch certain things, pet the dog, or play outside)

 

You will get there, but the road is not always straight, there are a lot of variables and there is no "one size fits all" treatment.

 

Isabel

[EAMom]

He is almost finished his second month-long round of prednisone. He is also taking Ceftin (I think - we tried Zithromax but the insurance company would only OK 6 pills at a time which meant that I was at the pharmacy constantly and paying co-pays constantly... ugh)

 

Hi Sally,

what insurance do you have? Several of us on this board have been able to get an "exception" (I don't know if this is the right term!!) to the rule of only 6 pills Azith. per month. It's either a form you fill out...or if the doctor just has to call? Anyway, there is probably a way around that limit. Maybe someone will post with more info. We had this problem 2 years ago (with our HMO), but eventually figured out from another parent, that you can get around it. Our current PPO doesn't care if we get 30 or 60 Azith. in a month!

[peglem]

He is almost finished his second month-long round of prednisone. He is also taking Ceftin (I think - we tried Zithromax but the insurance company would only OK 6 pills at a time which meant that I was at the pharmacy constantly and paying co-pays constantly... ugh)

 

Hi Sally,

what insurance do you have? Several of us on this board have been able to get an "exception" (I don't know if this is the right term!!) to the rule of only 6 pills Azith. per month. It's either a form you fill out...or if the doctor just has to call? Anyway, there is probably a way around that limit. Maybe someone will post with more info. We had this problem 2 years ago (with our HMO), but eventually figured out from another parent, that you can get around it. Our current PPO doesn't care if we get 30 or 60 Azith. in a month!

At the beginning of this year our insurance co. switched their med company and suddenly they were saying only 6 pills/month on the zith. I called and talked to them and I don't know if they checked with the doc or what, but I haven't had a problem since. These policies are designed to keep docs from prescribing 3 months worth of meds in one prescription (so the patient has only one copay instead of 3), but if you have a legitimate medical need (as per your doc) for the greater amount, they'll usually let you. I asked them, "isn't it up to the patient's doctor how much medication they need?"

[Megs_Mom]

Hi and welcome. I'm sorry to hear about your son. There are a lot of great parents here, so I'm sure you'll get quite a few responses. We use liquid azith, and ended up switching pharmacys. The original one gave us 10 days at a time, so I was running back all the time, they co-pay was crazy & at least once a month, I'd get denied. The new pharmacy called the doc office & changed something on the prescription, and they give me the entire month to mix myself. No further denials except one month when she had surgery & we had to buy the azith for that out of pocket - we could have used a different abx, but wanted to stay on the azith.

 

Our daughter sounds nearly exact to your son. Severe contamination fears - she was not so worried about touching a "weenie" (thank God!!!), but poisonous plants touched the car, touched her leg, touched her hand, touched her face, her hair - she could end up in a frantic circle of everything being contaminated in a matter of seconds. She also had pretty extreme fears about "sugar" making her sick - and pretty quickly, everything got classified as a sugar, so the eating thing was pretty intense. She started spitting "germs" about a month into her 3rd PANDAS episode - and she spit about every 4-10 seconds. It was not a tic - she had a thought behind it - she was spitting germs. It did however, become very habit based, and was a very hard habit to break once we got the PANDAS better under control. She did it in about 3 weeks, with the help of our ERP therapist. She also had panic attacks and developed agoraphobia. Pretty much all of this is OCD, and it really helped our family to cope, to understand what OCD is and what was happening in her brain. Here is a list of books that you may want to read: http://www.latitudes.org/forums/index.php?...ic=6616&hl=

 

The book referenced above is a workbook for kids (and parents) called "What to do when your brain gets stuck" - it is available on Amazon & is really wonderful.

 

Our daughter, 8, is doing very well overall. Thus far, we have been able to acheive remission using azith and ERP therapy. She does still have flares - she is very rarely sick, but this winter, did get 2 colds, each of which were preceeded by about a week by a PANDAS flare up. Each time, I panicked, and was sure we were headed to IVIG, but once I remembered the tools, she goes back to a good place within about 2 days - we give Advil short-term, have her azith dose changed, and use ERP again. We are just in the midst of her second flare, and it was the most intense of the 2 in terms of sudden onset.

 

In many ways, our daughter was also "functional" at school, but she was in severe fear all the time. It was not ok to let her just try to function like that - she definitely needed help. After reading your post, I would just suggest that you follow your instincts - don't accept anxiety for your son, so long as you have tools left to explore for your child. He deserves it!

[thereishope]

Welcome. many have given you advcie already, but I will also give some useful thread for you to read through...

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

How long does the dr plan on keep him on steroids? Make sure he tapers him off of them when the time comes. How long was he on the Zith before you switched? In your opinion, was the Zith better or achieveing the same results as the new antibiotic?

 

 

Also, make sure you are giving him probiotics.

[airial95]

Our son deals most with the OCD and has been on liquid azimuth for some time (our pharm will only give us 10 days at a time too but our ped will keep refills going - the constant copay and trips to the pharmacy is annoying, but it's nothing compared to what we were dealing with before!!).

 

Our son just started behavior therapy to help with the ocd and he told us the biggest challenge with ocd, especially in patients like ours who have a biological reason for the OCD is that it eventually becomes a conditioned or learned behavior. So even after the abx, ivig, or other treatment may have actually worked, they may still have residual ocd more as a learned response. He compared it to like the brain getting stuck on an autoplay loop. He says that the brain needs to be retrained to break the loop.

 

After 4 mo of abx we've got most of the symptoms under comtrol - with the exception of the OCD. Even that, though, is better than before and we're hoping the therapy will be another piece of the puzzle on our path to recovery.

 

Good luck! The folks on these boards have been a Godsend in all of the help and advice, and oftentimes just willingness to listen and commiserate!

[Megs_Mom]

Our son just started behavior therapy to help with the ocd and he told us the biggest challenge with ocd, especially in patients like ours who have a biological reason for the OCD is that it eventually becomes a conditioned or learned behavior. So even after the abx, ivig, or other treatment may have actually worked, they may still have residual ocd more as a learned response. He compared it to like the brain getting stuck on an autoplay loop. He says that the brain needs to be retrained to break the loop.

 

After 4 mo of abx we've got most of the symptoms under comtrol - with the exception of the OCD. Even that, though, is better than before and we're hoping the therapy will be another piece of the puzzle on our path to recovery.

 

We found this to be quite true for our daughter. ERP therapy has been helpful in eliminating virtually all OCD outside of exacerbation. And when we have a flare (omg, we have had 2 now ), it really helps us to get through a couple of mildly difficult days while we ramp up the abx. She is only 8 and the fear feels very real when it comes. We usually have to get through one or two meltdowns or panics - then we talk about each one, and do some ERP and it seems to help her be calm & to keep it from escalating quickly.