PANDAS

[hopefulinsc]

I'm curious. Has anyone heard about any children that have gone through puberty and then not experienced any more problems associated with PANDAS? Or, have you heard of anyone having a few episodes and then none at all after that? I'm just curious about the possibility of this and was wondering if anyone had heard anything.

 

When we initially took our daughter in to the pediatrician, she indicated that there have been children that have had one time occurences of Pandas related symptoms. However, after being on this forum for sometime, I have not seen anyone post anything like that.

 

Please advise.

 

Thank you.

[ad_ccl]

My understanding is that these symptoms will go away as the kids get older. Remember, those who post here are usually in the thick of things - when things start getting better they don't post as much - Ronna and I used to be the two who were on here the most - I am still in touch with her and her son is doing really well - my son too is doing really well - symptoms are less and less - and further apart - my son is 10 and hers is a couple of years older. We seem to both be on the same path - our kids are both on azith and have been for about two years and are doing well. I don't post too much anymore - as PANDAS is no longer the only thing I am thinking about! (Which is soooo nice - as for many years it was all I thought about)

[Chemar]

that is soooooo good to hear Alison

 

I think of you and Ronna often and so appreciate how the two of you truly were the "pioneers" of the info here re PANDAS (well actually on the tics/TS board as we didnt have a separate PANDAS one then) and also the first to report the success of prophylactic azithromycin

 

much love to both of you

[Pudgeo]

When my son was first sick I was in contact with another Mom in my area, Her son was 13 and after a viral illness came down with OCD/anxiety..couldn't function/had to stay home from school...the works. He was put on all sorts of anti-psychotics. After I found out what my son really had, I emailed her..Her son is now 15 and still has some symptoms. She emailed Dr K and explained what happened to her son. Dr K felt it had been PANDAS but now he was too old for IVIG. I am not in contact with the Mom, but I was very surprised he still had so many symptoms at an older age..(15)

who knows, maybe if it would have been treated from a viral/bacterial angle it would have had a better outcome?

We all PRAY that puberty can make it go away!! Sarah

[lss]

Are you saying that your child is free from Pandas and if so, can you tell me what you did, medications, anything else to help your child. Did your doctors say your child would eventually JUST outgrow Pandas? Can you give us a little background on your child so the new people here can understand?

 

Thanks,

LS

[Chemar]

Are you saying that your child is free from Pandas and if so, can you tell me what you did, medications, anything else to help your child. Did your doctors say your child would eventually JUST outgrow Pandas? Can you give us a little background on your child so the new people here can understand?

 

Thanks,

LS

 

Hi

if you do a search on the TS/tics board for ad_ccl and Ronnas posts you will find lots of info that they both posted over the years

 

I have not yet moved all those older posts over here now that we have a separate PANDAS board

[Pudgeo]

Cheri, When I was new here I read all their old posts..very helpful! Sarah

[ad_ccl]

Thanks for the warm thoughts Cheri! I am soooo appreciative of all that you and Claire and Ronna did for me in my early days, weeks and months here. I do still check in - but find others are now able to share all of the info that Ronna and I used to. If anyone wants to ask any specifics after reading some of my old posts I am happy to answer - you could also pm me to let me know there is a post for me to answer. This is such a great way to share info and success.

 

Our infections disease docs feel he will be on antibiotics until he is 18. He does still have minor tics that come and go with illness and growth spurts and seasonal allergies - that no one notices but me - he is starting to have normal signs of illness now - fevers. headaches etc - whereas before he just had an increase in tics when others around him were sick . I am ok with it after all we have gone through. He is a wonderful kid - very athletic and does well in school and has lots of friends. He was once so sick he could not walk across the room without jerking every step - he was too exhausted to do any sports and was up and down with emotions. He has come a long way - but it has been a journey. I am so thankful for all I have learned along the way - and the wonderful people I have come to know.