How Far We Have Come!

[nevergiveup]

I have to say, after 7 years of working with my family, all the physicians, I guess it has paid off. My fathers office had their first Pandas Patient, with immune deficiency come in for help. He seemed thrilled to tell me. They are working with a specialist out of New York, whom treats many panda kids and is suggesting 2 high dose IVIG's and then lower dose to handle immune deficiency. For all of you whom know me, my dd's struggles were very difficult but I also had to convince a family of physicians this illness was legit. It was a very hard time for myself and my family. (I felt abandoned) Now, years later My father proudly said, "my granddaughter has this illness". Can you imagine how "safe" this patient now feels just knowing her allergist immunologist docs believe in this illness, has a granddaughter with it and is looking into how to treat. I wonder if this mother has any idea how much all of us went through to get to this point. Its the small steps we all take that are creating change and hope for many. The so many nights of tears we cried to get to this point. The healing is slowly happening, both for my dd and for myself.

[JAG10]

Nevergiveup,

 

How validating!!!

 

Not to undermine the contributions of others, but when you bring DOCTORS on board, really on board, the cascade of healing and "lives saved" is exponential.

 

And knowing your dad is in our area, I am personally grateful the chorus for belief and treatment is one voice stronger!

 

God bless you!

 

Jill

[airial95]

Congratulations!! The journey for us has been far easier than any of yours, with an astute pediatrician who recognized it early, Dr. Murphy being local for us, and a neurologist who, while still skeptical, acknowledges that there is something to it and isn't entirely dismissive.

 

But I've always said, and will say it again, if it wasn't for people like you, and the many other hard working parents on this forum advocating for our children, my son wouldn't be getting the needed treatments and making the tremendous progress he is today.

 

So I, and many other parents like me, say a resounding THANK YOU!!! To all of you who have come before us and helped pave the road for our children. We still have a ways to go, the road is still bumpy - but now there is at least a road, created by those who have come before us.

 

Thank you!!

 

(Sorry for the terrible road analogy - it's the traffic engineer in me, can't help it! )

Edited November 8, 2010 by airial95

[Fixit]

Thanks NGU!!!

This has been a pretty good week of posts....

lets keep it going!!!

[thereishope]

It's mixed feelings, isn't it. So many suffering kids, so many parents feeling lost and beaten down and now a new "generation" emerging that may have an easier climb and kids that won't have to go through everything all of ours did. Optimistic for the future, still pain when looking at the past.

[JuliaFaith]

Thank you for all you do and all you have done!

[peglem]

It's mixed feelings, isn't it. So many suffering kids, so many parents feeling lost and beaten down and now a new "generation" emerging that may have an easier climb and kids that won't have to go through everything all of ours did. Optimistic for the future, still pain when looking at the past.

Yeah.

 

But it still feels good to learn that all the struggles your child and family have gone through resulted in others getting easier help.