well, my challenges are many. First, I have yet to find a doctor in my area who is willing to go outside his comfort level and pursue alternatives to just "drugs"
I have been through about 6 endos in ct and now we are trying to get to Yale where there is a pediatric thyroid center. It's a teaching hospital so perhaps those doctors will be more receptive.
My beef with these guys is I have lots of questions- like:
Will she hit puberty at 8 yrs old? Will she be able to have children? Will her thyroid decend to its proper place? Will it start working ever?
I think these are legitimate questions- but for some reason the docs have either ignored my questions, told me not to worry about it, or they just don't know.
That really pissed me off. I have fired every doctor we have encountered- to their faces actually, because I'm not playing nice anymore. I don't care about their ego or their fellowship with other doctors- it's my kids life I am dealing with- so watch out for mama bear!
So now, we have some other things I am monitoring- like growth. A definate side effect to CH is stunted growth.
She was off the charts up until 2 weeks ago. Now she is in the 50th % for height and weight. IF her parents were shorter, it wouldn't be a concern, but- Greg is 6ft and I'm 5'9". My kids should not be so short. All my other girls are off the charts.
After learning this, we discovered she has Strabismus
and needs to wear glasses because she is also farsighted. (She is 2.5 yrs old by the way-try finding glasses that fit and won't be trashed in 50 seconds!)
And the worst of it is- her optic nerves are grey- meaning a severe lack of blood. WHY???? Pressure from her %^$&ing thyroid on her facial structure because it is in the wrong place. This can lead to permanent eye damage, and possible blindness if not treated.
Okay- I am totally not trying to freak you out (sorry if I have already) but my whole point is- why haven't these doctors talked about any of this? I swear modern medicine is dysfunctional in that they wait for a problem and firefight to fix it instead of my logic of PREVENTATIVE MAINTENANCE!!!
So, long story short- we are gathering all of our resources and will go to the ends of the earth to find a doctor, regimine, therapy, whatever that allows my little girl to be just that- a little girl and certainly not a number.
To treat the pressure, we are doing cranial sacral work with a chiropractor, following the Feingold diet for temperment (oh yeah, certain foods are not good for thyroid disorders) and taking her to vision therapy as well.
I would be happy to chat at length with you about this (can you tell!) so feel free to PM me.
I'm going to jump over to that site the PP posted.
All my best!