A GOOD sign

[P_Mom]

Well, my younger son had bad hoarding issues when he was in his episode. Hoarded food, garbage, paper scraps, leaves rocks...just about anything. Kept them in piles in his room(food in piles in the fridge).....would retrieve garbage out of the trash...etc....cause him much anxiety and sadness to throw away "stuff."

 

Well, after the episode cleared, he kept this hoarding very mildly....wanting to keep toys he doesn't use, keeping papers, and sadness when we "got rid" of something. Nothing bad, but, still there a bit. It bothered me because, of course, in my mind, this would lead to a "Hoarding" episode on t.v. some day...(has anyony seen that?)

 

Well, his room needed a good cleaning...the kind where you go through everything and get rid of what you don't want/need/use. This has needed to be done for a year now, but, I have been hesitant because I felt we would get nowhere and he would just keep everything and get sad...I wasn't up for it emotionally.

 

I got the courage to put him to work today in his room. Gave him a garbage bag, a keep pile, and a donate pile. OH MY GOSH!! I am finding myself actually encouraging to keep a few things!!!!! ....he wants to get rid of just about everything, with ZERO prompting from me!!! Even good toys he just got!! I am truly amazed and my heart is doing little flip flops inside!

This is a VERY good sign for him....he is showing no anxiety about it what-so-ever! My little guy has come a long way and I am so proud of him!!!!

 

As many of you know, I have been struggling about whether to do IVIG or not....today gave me my answer....No, not now atleast....hopefully never. (although I would do it in a hearbeat if needed!)

 

I just wanted to add that it took 3 years since the initial bad episode of PANDAS (induced by strep) for my son to get to this point. 3 years! So, whatever method you choose to halt the onslaught..... antibiotics, IVIG, PEX.....it seems like lots of time is needed to heal........as long as you keep them strep free. (my son has also not had strep in 3 years)

Edited June 21, 2010 by P.Mom

[kimballot]

Congrats! Enjoy!

[KaraM]

Congratulations to you both. And thank you for sharing.

 

Kara

[peglem]

Wow! That's big! How wonderful!

[P_Mom]

Thanks guys! It IS big....and only PANDAS parents can understand!

[bgbarnes]

Well, my younger son had bad hoarding issues when he was in his episode. Hoarded food, garbage, paper scraps, leaves rocks...just about anything. Kept them in piles in his room(food in piles in the fridge).....would retrieve garbage out of the trash...etc....cause him much anxiety and sadness to throw away "stuff."

 

Well, after the episode cleared, he kept this hoarding very mildly....wanting to keep toys he doesn't use, keeping papers, and sadness when we "got rid" of something. Nothing bad, but, still there a bit. It bothered me because, of course, in my mind, this would lead to a "Hoarding" episode on t.v. some day...(has anyony seen that?)

 

Well, his room needed a good cleaning...the kind where you go through everything and get rid of what you don't want/need/use. This has needed to be done for a year now, but, I have been hesitant because I felt we would get nowhere and he would just keep everything and get sad...I wasn't up for it emotionally.

 

I got the courage to put him to work today in his room. Gave him a garbage bag, a keep pile, and a donate pile. OH MY GOSH!! I am finding myself actually encouraging to keep a few things!!!!! ....he wants to get rid of just about everything, with ZERO prompting from me!!! Even good toys he just got!! I am truly amazed and my heart is doing little flip flops inside!

This is a VERY good sign for him....he is showing no anxiety about it what-so-ever! My little guy has come a long way and I am so proud of him!!!!

 

As many of you know, I have been struggling about whether to do IVIG or not....today gave me my answer....No, not now atleast....hopefully never. (although I would do it in a hearbeat if needed!)

 

I just wanted to add that it took 3 years since the initial bad episode of PANDAS (induced by strep) for my son to get to this point. 3 years! So, whatever method you choose to halt the onslaught..... antibiotics, IVIG, PEX.....it seems like lots of time is needed to heal........as long as you keep them strep free. (my son has also not had strep in 3 years)

CONGRATULATIONS!!!!! What a wonderful gift! Gives us all hope!

Brandy

[forjpj]

Awesome!!

[Fixit]

on the tail of your good news...can i ask....

how old is your boy....

and if i may ask from worst point to now...how much better is he overall...

do you only have about 15 % to go???

 

i am so happy for you.....

but if i can add caution....for my ds i haven't had a positve strep in about 2 1/2- 3 years...thought pressented with some illness (not strep, he did recover fully on abx)...so maybe he's outgrown strep

i think this almost 1 1/2 year ago onset was from myco p...which set off a some sort of hyper /overdrive senerio....

just be cautious of other types of infection...

 

i'm not trying to be a downer.....i hope for some miracle(which is alsways possible) to happen so i will not need one of the big guns.....I'm ready any time for that to happen!!!

[P_Mom]

My son I am speaking of is 7.....his onset was at age 4. I have an older PANDAS son who is 10.

 

From his worst point to now? Well, I'd say 98%. He was bad at one point. I am very cautious to say 100%. I am still bewildered that Sammy (of Saving Sammy) recoverd, according to Beth, 100% without any lingering symptoms!? Then, why did he take Straterra for years afterward?? It makes us parents confused as to what to expect as far as recovery goes. I, personally, find it very hard to believe he suffered for as long and as severely as he did, yet, made a 100% complete recovery on antibiotics alone, without ANY lingering symptoms or flairs??!!

 

I do know that any infection can set off PANDAS symptoms.....I also know he still has it.....it is smoldering in there waiting for strep to come around and explode. He has recovered wonderfully, although I will not say 100% (but, even other PANDAS parents would be hard pressed to see any of his lingering stuff).........but, he is fully functional, happy, and thriving. So, I am happy. I know what I am dealing with....I have access to antibiotics and steroids if needed....as well as IVIG, if needed. For now.....we will enjoy life! And pray!

[Suzan]

My dd7 has hoarding issues too so this is good news for me as well. Congrats on this great accomplishment! It's a good reminder that the healing does take time.

 

Susan