Trying to work our way out of an episode...

[MMWG]

After 6 months of peaceful, non-pandas bliss, we started kindergarten and were thrown into a most horrible episode. We believe it was purely stress induced this time, and it was the first time we have seen every single clinical sign of pandas at once (our initial episode--that was caught--had most signs and a positive strep test. Since then, we have only had one positive strep test, but likely that is because we hop on it so fast). We had severe separation anxiety, fight or flight, ocd, tics, emotional lability, the whole enchilada. He was having night terrors too. The school situation was actually part of the issue--we usually assume full responsibility for school problems, but this place was so chaotic, and there was a little boy who was violent in the class, and he kept attacking our son (punching him in the face, kicking him in the stomach). We pulled him out of school and are now homeschooling him. I didn't want to, but I just had to get him out of there. The backslide was so fast and I didn't see the school situation improving anytime soon.

 

Anyway, it has been 2 weeks since we left. His nightmares went away in a couple days after he stopped going, and his sleeping is much better. His separation anxiety is almost gone. He is still more anxious than normal when we are going someplace new and he doesn't know what to expect. We visited our pediatrician, who has been great about working with us to determine how to best manage his PANDAS. He was on preventative abx (penicillin--not my first choice but he was worried about anything broader causing resistance. Previously we have been on cephlaxin during an exacerbation, which usually works well). We had put him on Zoloft when he starting having the anxiety issues at school--and it did not help at all. So at our appt last week, we took him off the zoloft and instead the doc wanted to try a mega dose of penicillin to rule out any underlying bacterial reactions causing the episode (this is why i like him. he knows we can't tell just exactly what is going on, but he is willing to try different things and then takes my word for what seems to be working). I asked for cephalaxin, but he didn't want to give that. The abx don't seem to be making much of a difference--this is our 5th day and he seems the same. Tic is still there, particularly when he is concentrating on something. He is so emotional...we spent so long working with him so he didn't cry or have a tantrum over everything that did not go his way, and now it feels like we are back to square one.

 

If the abx don't work, we have a prescription for a different type of anxiety medicine to fill next week. Then, if that doesn't help, he gave me a 3rd potential plan of putting him on a medicine that might help the tic and also apparently helps with adhd type symptoms (we have those too), but was hopeful we wouldn't need to try that one. Honestly, the tic is not a big issue for us--only we notice it, it's not bothersome really, but it bothers me because i know he is still in this episode.

 

The doc promised me we would get him back to where he was this summer. It is so hard to watch the backslide, one step forward--two steps back. It seems surreal to me that he cannot be in school--but public school would be a nightmare for him, and our one shot at a smaller, private school turned out not to be so great either. I love teaching him at home, so that doesn't bother me, and he seems to be loving it. I just am sad he can't just go to school like other kids, and wish we could get a handle on how he backslid so fast.

 

I guess I am just sad. Why does everything have to be so hard? Why do I have to be his teacher, his doctor (his doc is great, but I am the one doing all the reading of research articles and pointing things out and suggesting things), and his mommy...all I want to be is his mommy. I have been explaining pandas to everyone--school, parents, friends, nurses. I still don't think we have any clue how to get a handle on this. I feel like we are throwing him to the wolves everytime we have him do something that other people don't think twice about.

 

I checked Saving Sammy out of the library today. I have been scared to read it, because I know it will make me cry. I feel like giving up, but then I know that I am truly the only one who can fight this fight for him. Thanks for listening.

[EAMom]

Yikes!

 

Where are you located? maybe someone can rec. a doc. Be very careful of psych. meds since PANDAS kids often react badly to them (plus, they may only mask symptoms, not treat the underlying problem, infection and autoimmune dysfunciton).

 

Amoxcillin didn't do diddly for my PANDAS dd either. I responded to your other post about antibiotics. Hang in there!

Edited September 19, 2011 by EAMom

[airial95]

I would try a different antibiotic. Many have had luck augmenting, we've used cefdinir(Omnicef) and azithromycin with success. If your doctor is willing to try various hints, I would push for a different antibiotic before psych meds.

[MMWG]

Thanks, I think I might write him a letter (he says I write great letters!) and ask if he would be willing to try a different antibiotic before we try a different anxiety med. I want to include some firm cites on trying augmentin or another--we had azith once with no avail. I am reading Saving Sammy right now and it is terrifying me.

[smartyjones]

I am reading Saving Sammy right now and it is terrifying me.

 

please MMWG -- i know and fully understand what you are saying -- try to see it in a different light. i am stunned and amazed at how much progress has been made in the past 3 years. it's really unbelievable!! ds7 had 'sudden onset' almost 3 years ago -- halloween time -- so many of our 'anniversaries' of memories are starting to come back in my mind.

 

this was, i think, about a year before Saving Sammy was published. anytime i see him (including the Today Show that i've seen 9 thousand time) i just can't help the tears flowing. but i think of it in that here is a kid that was recommended for long-term in patient placement b/c most seem to agree that it was too difficult to meet his needs. so -- here he is now -- i think a junior at Carnegie Mellon - ? -- and looking and seeming very healthy.

 

as horrific as his path was -- and many here on this forum are -- there are success stories that are inspiring also!

 

i know all too well the backslide and it is so heartbreaking. many here on this forum can feel your pain. my ds had 'sudden onset' in oct. 2008 we were relatively 'lucky' to get him on the proper abx and saw 100% remission in march. of course, i didn't know so much then and thought he was cured. after about 30 days off the abx, he slide and i was devastated -- absolutely unprepared and unaware. since then, i've tried to have good plans a, b and c and i think that helps if you feel you can have options in place. so -- i'd suggest researching and working towards a few contigency plans of what you could do and where you could seek help.