Thank You

[ange]

Hi. I am new here, but have been lurking for the past few months. Just wanted to say a big THANK YOU to everyone here on the board for sharing their stories and experiences. It has given me a lot of support as we begin the journey with our Pandas son age 8. I will post more of our story later, but for now, I just want to say I really owe a large part of my son's diagnosis to you guys!

 

He did not present with the "typical" overt OCD and tics that the textbooks described, so my ped. scoffed at my suggestion that this might be pandas (even after moderately elevated ASO titer to go with the behavior change). After reading the forum posts I saw that the RAGES were definitely part of this disease and it gave me the confidence to pursue another opinion (even though I am generally timid to be assertive to professionals).

 

(He is currently on Zithro for 5 months and his rages have improved a lot, but he still exhibits the moodiness and other difficult behaviors so we are hoping the zithro wil continue to work that out over the next while...)

 

Thanks!

Ange

[butterflymom]

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Edited February 3, 2016 by tampicc

[Phasmid]

Hi Ange, glad you emerged from the shadows! Happy that you found information and strength here. Besides the rage fits, does your son have motor tics as well? So, no OC issues? What state are you in?

 

 

[thereishope]

I wanted to extend an official welcome to our PANDAS PITAND family! Yes, it's hard to chime in and post about what your child is going through sometimes, but in the long run it will help.

[browneyesmom]

Hi Ange & welcome! We're glad you found us and are here.

 

I second what Vickie wrote for a couple of reasons... one, you can gain feedback that might be helpful to your child/you and two, the support is so valuable during a horrific family trial in which we all know there is little support elsewhere. (I am the mom who posted about DD11's rage episodes requiring 5 ER trips in 2 weeks around Christmas, so while I understand your reluctance, I am glad you are opening up for support. )

[ange]

Thanks for the welcome! There is so much to say but I'm not sure where to begin, so please excuse my ramblings!

 

Last summer when my son was 6 1/2, he became very defiant, had terrible rages directed at us over seemingly insignificant things, and we knew that something was really off. Concurrently, I noticed he had a persistent cough that would not go away despite multiple trips to the doctor who insisted his lungs were clear. Only later did I realize that the cough was probably like a tic, and that was one of the clues I used in putting this Pandas diagnosis together. My ped finally agreed to get the ASO titer tested (I guess he did not know about dnase, which he had tested later and was elevated at 435). Even when he cam out mildly elevated at 285 (normal range was under 150 for the lab we used), my doc pooh-poohed the Pandas theory and said that it is characterized by tics and OCD, none of which my son had (he never even connected the habit cough...) He said we could try putting him on zithro for a month and see if it helps. At that point I left that ped (he had been my ped growing up too) as he was so patronizing to me and I was so upset at him for not taking this seriously (my whole life was in a shambles over this, every evening was a battle getting this kid to sleep, and the doc made me feel like I was the neurotic mother with the mental illness).

 

We went to another ped near our area who specializes in Pandas and she has been so compassionate and wonderful. She agreed with me and said she wanted to treat it as a Pandas case even though he did not have the tics/ocd. So many of the other symptoms my son has were also part of it - such as the shirt chewing, getting to sleep issues, ODD, etc. He was on zithro 200 mg but we raised that to 250 and have seen definite, but SLOW progress.

 

His all-out rages are infrequent and we do not need to restrain him from throwing chairs around, tipping over the kitchen garbage, etc. We are still dealing with his moodiness and immaturity, and occasional melt downs/crying/wailing (probably anxiety drvien).

 

Interesting things I have not seen mentioned but will throw out there..

 

his pupils are dilated most of the time (as are many with Pandas) and he just got glasses...I read online that dilated pupils can let in too much light and damage the eye - wondering if anyone else's pandas kids needed glasses early because of the dilation factor? Although both my dh and I have had glasses at an early age, so maybe it's all genetics...

 

Before things really got out of hand, I started noticing that there were always holes in his socks - he would get them caught in the screw of the folding chairs at the table...I couldn't figure out why his were the only socks that got holes. Now I'm confidently wondering if that falls into the chewing shirt category or something - also pandas related.

 

Other things describing him:

 

someone here posted about issues modulating voice - my son is really LOUD except when he retells a story at the table...I have such a hard time hearing him.

 

Also, he doesn't know when to stop talking...retelling a story he heard in school can take up the entire meal, and no one else gets a chance to speak if we don't cut him off!

 

He irritates his siblings, has always needed a lot of attention, even at a young age, late nighttime training at age 6, super smart, very charming outside of the home but inside it's a different story - that is why my original ped. (and others I've spoken with) all want to say it's not Pandas. That is why the forum has been so helpful...seeing your similar experiences made me know deep down that this might be it.

 

Now we are also worried about our dd6 - she was the happiest child, sweetest kid, our "perfect child" and now she is becoming more defiant, having meltdows, etc. ever since her sore throat (neg. culture) a month ago. I am going to have her tested soon.

 

I have a history of strep infections (maybe I have Pandas too but that is for a new post - this is getting way too long) approx every 3-4 months over a year and a half beginnig 4 years ago. Now I just get sinus infections but nothing for a while... My son had a strep infection about 6 months before his behaviors went ballistic, and my dd6 (and dd4) have a more extensive strep history (still + after a round of amox.), etc.

 

Enough for now. Thanks...this was cathartic!

[browneyesmom]

Hi again Ange... Sorry you've been through so much with a doc who was non-believing; I guess we all get our share of those at this point in the medical community's acceptance of it. Who is to say when this began for your son? I think that is difficult for many of us, esp since it's not all that well known and wasn't on the radar for a lot of us until it became severe.

 

My DD11 definitely does that with the telling a story that never ends. Sometimes, we ask for the condensed version, but it doesn't always limit them. My understanding is that the hyper talking can be one of the s/s of ADD.

 

I hope you'll be able to get an accurate test on your daughter soon... maybe your new ped. will run labs for the titers on her as well as the swabs are not always accurate - they have some false negatives.

 

Please take the time to take good care of yourself... I'm talking to myself as much as you as I struggle with doing that. I'm sure we all do as this is such a consuming condition.

 

Welcome again & take care,

Denise