Following the yellow brick road

[7upMom]

Instead of Pm'ing and calling a bunch of parents , who have been so caring and supportive. Thought we would just send a full post here- it may seem small and insignificant, but to us it is tremendous! We made that appt with Dr. K, we go in two weeks from Monday! That couldn't come soon enough quite honestly. I want to yell it from the rooftops cause it seems like there is hope, I want to breakdown and cry cause its just so emotional, I want to scream at the dr's that said he has what he has and now it will just be a long hard struggle for him (GGGGGRRR) Heard this just on Monday from the immuno PANDAS diagnosing dr- they were doing his 3 month titer recheck ( of course its been 5 days and no results back until next week on those - that takes WAY too long) but we were told low dose 250mg penicillin was the only proven protocol they would follow treating PANDAS. As far as the tic disorder and severe OCD- they said we feel sorry for your child but there's nothing we can do, we treat the titers- hope they come down and the rest well we are going to send you to an ocd/tic specialist he has what he has at this point. Begged if they could even consider changing the antibiotic or upping it- NOPE not their protocol - they claim they go off the american academy of pediatric studies for PANDAS ( interesting- I don't find this to be consistent with what they are claiming) Has what he has , hhmmm at 9 years old he tics so bad his joints pop in and out, his ocd ( which was overnight onset last month) is so that he breathes a certain way, walks a certain way, moves his arms a certain way, doesn't like walls behind him, etc, etc, etc. He will skip sideways 4 times, hop forward 3, does something else infront of the car door ( haven't dist that yet) before he will get into the car. They are sorry that he will stand outside in the snow while barefoot with no coat because his brain tells him to, they are sorry that he begs to die at 9 because he doesn't want to live like this, they are sorry that he rages so bad from trying to hold in tics and compulsions at school and public settings that we have had to restrain him from harming himself, that he physically hurts - that he is just tired from all the movement he just wants to sleep all the time. They are JUST sorry! Their reasoning for not trying something different - they don't experiment with kids they only follow what has been "proven" to work. Where is their proof of a low dose penicillin? working on this?? Enough venting about that, because its actually a good post- we ARE going to prove what works- we ARE going to get him better, we ARE going to go see Dr. K!!!!!!!!!!!! ( : Chel

[simplygina]

I understand completely how emotional it is!

 

I emailed Dr. K last week to give me some direction about what to tell our doctor for our appointment yesterday. After reading our history he said that he was pretty willing to bet that it is PANDAS. When I read that I surprised myself by starting to bawl. We've been dealing with this for over 2 years and I thought I had gotten past the emotional part of it. I guess I was just stuffing it down because I sat in front of my computer and sobbed with relief and mourning for the past few years and hope and so much more!

 

Good luck and Thank God for doctors who are so willing to help us find the answers!

[7upMom]

I understand completely how emotional it is!

 

I emailed Dr. K last week to give me some direction about what to tell our doctor for our appointment yesterday. After reading our history he said that he was pretty willing to bet that it is PANDAS. When I read that I surprised myself by starting to bawl. We've been dealing with this for over 2 years and I thought I had gotten past the emotional part of it. I guess I was just stuffing it down because I sat in front of my computer and sobbed with relief and mourning for the past few years and hope and so much more!

 

Good luck and Thank God for doctors who are so willing to help us find the answers!

 

How did your appt go? Is your doctor going to work with Dr K on a treatment plan?

I so agree Thank GOD for the drs that are willing to step outside a Normal protocol to not necc "experiment" but think outside the box and be willing to try something different as if it was their child!