Good News

[P_Mom]

Hi everyone and Merry Christmas!

 

Well, I thought I would pop on and share some good news. The whole house, including my two PANDAS boys....just got through a decent upper respiratory tract infection, and, for the first time in almost 4 years, neither of my boys had an increase in PANDAS symptoms...none. I am stunned, happy, hopeful, but, guardedly optimistic because I know the nature of this beast. We will still continue with their proph. antibiotic indefinitely. I could not believe when almost 4 weeks ago my younger, more severe PANDAS son woke up one morning with a sore throat and chest congestion, which proceeded to turn into a nasty cough. Normally, EVERY time he got exposed to anything..PANDAS symptoms would flair about 3 days before someone in the house presented with an illness (didn't even have to be him) Well, a few weeks ago he just woke up sick! Yipee! LOL No PANDAS warning. Then, my husband got it, I got it, then, my older son got it...again, no pre-warning tics from him either. I don't know what is going on. It seems so strange after almost 4 years of this to see them doing ..well, regular. I guess it indicates that healing is continuing and they are no longer reacting to everything. I still think they would react to strep. I just wanted to put this out there for everyone to give some positive news and hope. Someone recently posted one of the docs said that PANDAS is progressive. Well, in our case, it seems to be regressive. I wouldn't hang onto those words that your child will for sure just get worse slowly. My younger son was a severe onset with the WORKS.....homebound. My older son presented with sudden onset motor tics....but, none of the other stuff....except some ADHD behaviors. I have watched them both wax and wane over the years.....ever soooo slowly getting a bit better as time passed. I really didn't think we would see a day when they did not react to illness....atleast not until they were much older. My boys were diagnosed PANDAS in 2007 (caught early) at the ages of 4 and 7. They are now 8 and 11 and doing wonderfully...excelling in school...very social, etc. They never received any treatments except for antibiotics. They never did high dose antibiotics. Younger son did require 2 steroid bursts to control one flair due to Pertussis and one just due to a URI. So, healing is possible without more aggrressive treatments... (but, I would have definitely done IVIG, etc. if needed...still will if I have to ) We go see Dr. Latimer for a check-up January 20. I will post what she has to say. In the meantime, and for quite a while, I will keep them on their 250 mg Aug. a day (yes, that is all they take...not even supposed to be sufficient...but, it has worked for them for years), multi-vitamin, probiotic, and fish oil. Just for the record, no Lyme is involved with my boys, nor are any underlying infections involved. They both do have mild immune deficiencies that seems common in PANDAS kids, but, no doc is concerned because the "lows" are apparantly close enough to normal and they do not get sick often. We'll also keep monitoring that. Youger son scored 162 on Cunningham, and older son 112....both had normal antineuronal antibodies. Oh, my younger son had T&A in November.....tonsils appeared just fine before surgery, but, doc said they were "very infected" upon removal...perhaps that is the reason for the improvement. Neither has had strep since onset, which I attribute to their healing, and which I think is crucial in PANDAS recovery. That is why I will not pull them off their proph. antibiotic anytime soon.

 

Well, that about covers it. I wanted to give an update to encourage everyone who is struggling.....and to give hope this Christmas. Your children can recover........4 years ago we thought we may have to institutionalize my younger son. You would never know it today!

 

God Bless you all! I pray that every single child and family experiences healing...no matter what you are dealing with or how you go about treating.

 

Merry Christmas!

 

Kelly

[dcmom]

Kelly

 

Thank you- what great news. Enjoy them!!!!!

[KeithandElizabeth]

Kelly:

 

Yeah! Great news! I think that the fact that they are not responding to other illnesses is wonderful.

 

Thanks for sharing and enjoy the holidays!

 

Elizabeth

[philamom]

Fantastic Kelly!! It's always refreshing to hear positive updates! Have a great holiday!!

[cfamily]

Great News! Thanks for sharing your good news.

[thereishope]

Great news!

[butterflymom]

=

Edited February 3, 2016 by tampicc

[P_Mom]

Thanks everyone!

 

I just wanted to mention that this trend is not unique to my situation. I know every child is different. But this course has been seen in many PANDAS children. When I first joined the forum in 2007, the "veteran posters" that were here then (who have since left), were posting the same results with their kids. Not all of them, but, many posted that their children slowly recovered over MANY (for us it has been 4) years until they hit the point when they would stop reacting to everything and start responding to illness "normally." These kids were kept on proph. antibiotics for years until this improvement was seen...and then for who knows how long after. I know several would just bump up their antibiotic whenever they saw a flair that was concerning enough. That is what I do....they stay on 250 Aug., but, when I saw a flair, they would get 500 mg 2 x a day for about 4-5 days or until things settled.(or a steroid burst if things were really concerning) This recent illness, no increase in antibiotic was required!

 

Also, IVIG was basically unheard of when I began posting in 2007. My first post was about IVIG (from Dr. K's site) and I was wondering why people didn't pursue it. So, the kids that were being posted about 4 years ago...none of them had any treatments except antibiotics. (maybe some SSRI's in the mix before diagnosis) I believe they are all doing well today.

 

Anyway...just wanted to clarify that this trend in my boys is not unique to me.

[Fixit]

Anyway...just wanted to clarify that this trend in my boys is not unique to me.

 

 

i read your post earlier...but i was in a bad place to reply....i am vvveerrryy happy for you, truly!

 

can i just ask you to confirm...as i can't remember or detect from other posts

1)are you saying your children were in episode over the last 4 years..waxing and waning, never getting 100%..and have recently gone into remission..100%..

2)or are you saying their pandas kicked up starting 4 years ago..put them on abx...remit100%....get sick, up abx , remit100%

 

my ds used to the second senario.... but now we are in a year plus episode(waxing and waning)...and would be great to hear that you are talking about the first story...where, eventually after years of something going on ..it just stops!!!

 

thanks for coming back and reaffirm your statement.....I REALLY NEED THIS TODAY

[P_Mom]

Hi Fixit!

 

Scenario number 1, and number 2. My children would wax and wane over the past 4 years. My younger son never reached 100%, but, their would be periods when my older son would reach 100%. But, they both would react/increase when exposed to anything. My older son would even get a very mild facial tic during allergy season. Didn't see it this year that I can recall. I can say, right now (that is important 'cause who knows what is around the bend)....but, right now they are both 100%. This has not happened in 4 years with my younger son. They both just had a URI with no increase, so that makes it really cool. I am not going to say the PANDAS is gone from them, but, things seemed to have stopped. (for now!) We are 6 months out from any kind a flair...that is a record. Not to mention we have gone 4 school months without any flair.

As for scenario number 2....yes, PANDAS surfaced undeniably 4 years ago. Older son remitted 100% in 48 hrs. of Amox. Younger son remitted 80% after a month of PANDAS symptoms and 2 full courses of antibiotics. (amox. and Keflex) They have been on proph. antibiotics since the first flair in 2007 aqnd never had strep or a "bad" episode since. When they would increase, I would up their antibiotics. Older son generally remitted to 100%, but, it took longer than 48 hours. His longest flair was 2 weeks, but, then the flair would stop as quickly as it started. I continued with this...upping antibiotics for him when he would show with tics.....he would remit...stay on proph. antibiotcss..up when sick and flaring..he would remit, etc. Until this last year...no increase with illness so no upping antibiotics. My younger son always had some sort of symptoms present...never reaching 100% but fully functional. I did they same thing with him, but he was different in that he did not ever fully remit. Again, same with him..until this year. I think it may have been the t%A we just had for him in Nov. because the doc said they were infected. My older osn had t%A in Nov. 2008. Maybe that is why he would remit between episodes??

 

I am hoping that this is what Cunningham refers to when she says that over time....the immune system dysfunction responsible for PANDAS "rights itself" (many cases...not all)

 

Hope this helps. Remember....it has been 4 years of PANDAS for us to reach this point (and 4 years of no strep) ..... I only pray it lasts. I am not about to let my quard down....that PANDAS beast is most likely lurking just below the surface.

 

Let me know if you have any more questions.

Edited December 23, 2010 by P.Mom