Tuesday, January 31, 2012

Dr Miller=My Hero

Wow.  I do not think I have had such a rough patch since Sydney was weening off her meds 10 months ago. Since getting her "diagnosis", things have been a little crazy around here.  The diet continues to be working, in fact, the days when we don't see much verbal response from her I later find out was/is due to a slip in the diet.  So, we are keeping up with the GF/CF diet even though it is impossible to find all of the ingredients needed to bake any one item.  I have been blogging, searching, and creating a lot of different recipes so that we has a family can do this together, I now just need to find where to buy the food.  It has been going OK and I am getting more used to the idea of the diet (I dont know if Cameron can say the same).We have found that it is hard to just feed Sydney one thing and the family different which has been a challenge.  She wants what we are having, so this has come at the expense of some of our favorite foods.  Just yesterday Cameron sat down at the table with his pizza and without thinking pulled out the ranch dressing. I immediately forced him outta the room but not without Syd seeing it first and crying for her ranch.  Poor girl.  If we want to sit as a family at dinner time, we have to give up some things.  Cheese and Ranch are going to be the biggies.

Since starting the diet, Syds sleep has been EVERYWHERE.  She has never been a great sleeper.  Not even a good sleeper, but now its just ridiculous.  In the past she could go 5 sometimes even 10 days between early morning wake up calls at 3 am.  Now its nearly everyday and she wake ups anywhere between 1-5am.  It is really strange.  In an attempt to stay sane, Cameron and I agreed to finally try some kind of sleep medicine.  I know its not great for young kids, but neither is not sleeping!  So, we went to the pediatrician who finally decided to believe me, but still said there was nothing he could prescribe since she has a seizure disorder and since so many meds lower the threshold for more seizure activity.  It sucked.  I once again found myself in a dr.s office with nothing.  No help, no guidance, and just a "I understand your frustration but there isn't anything we can do" response.  I was SO mad!  And this time I made myself known.  You can imagine it; astrong willed, extremely emotional, worried, and sleep deprived Britney raising hell saying, "Now that you believe me you are telling me that you can't help me!?" and "I can't take no for an answer right now... there is no way I am leaving this office with nothing".  I was pissed!  And I was TIRED!  And I was loud and sobbing at the same time...its a funny picture to imagine...and even funnier one to see I am sure.  (I am an ugly crier for sure.)  My dr. at that point decided to go and speak to the other dr.s in  the building and even paged one that was out and came back with something that could possibly help. The melatonin which we have tried and not had success with but this time he tripled the dose! There really isn't much they could do aside from that, and I understand that, but I still needed help..something that would work.  That night knowing that we couldn't do much more of Syds sleep stuff, Cameron called a friend of his, Dr. Miller, (who is a pediatric specialist in town) and left a message on his personal phone.

Sunday night, we got a call back from this Dr. who called on his night off and talked about Syd for nearly an hour on the phone. What a guy! He told us about some new therapies and got us an appt with him 2 days later.  Today is that day.  I had a wonderful 2 hour visit with him where he quickly affirmed what I was thinking, "before anything else, we need to takle this sleep problem". YES!  "Whos to tell if its the sleep alone causing her brain to stop functioning?"

Along with this, he confirmed my feelings about Syds "diagnosis".  "She is really right on the line right now" he said. "Some would say she is on the spectrum while others would say shes not." There really is no test that will say one way or another.  This is why it has been so difficult for dr's to daignose and see specific tendencies as autistic. It is comforting though because it means she is higher functioning if at all. We both agreed to treat her as if she is in fact on the spectrum, since exta treatment couldn't hurt, and we are going ahead with Menthyl b-12 injections once every three days.  I start Friday! EEK!  I am excited about this new treatment as it is a vitamin not a medicine and it has proven to help a lot of people.  Dr. Miller alone has an 80 percent success rate with it.  Sydney oddly enough, fits the criteria for to a T.  (Higher functioning with specific delays in speech) It sounds like it was custom made for her! :) (Hows that for optimism!?)

So that is it for now.  Dr. Miller turned out to be the just the person that we needed in our lives right now. I am so lucky that Cameron knows him and has a personal /professional relationship with him. It has really helped get us in quickly and he had more of a vested interest since Cameron is a fellow employee.  He was so respectful, kind and honest and he is someone who will work with us, not against us. It was refreshing!  I AM SO EXCITED to see what we together can do for Syd!

Anyway, I can't wait to see what the future brings.  If anyone has any yummy GFCF foods or recipes to share, I would love them.  Apparently I am gonna be on this diet for quite a while. (At least 2 years!  AKKKK!)

I also want to thank you all for your support at this time.  It has meant a lot to us, and even if I can't respond to your emails and things now, just know that they are EXTREMELY appreciated.  It takes a village to raise a child and I am more aware of that now more than ever.

1 comment:

Kristine Pratt said...

So glad you finally have a Dr. on your side. Why can't all Dr.'s be as awesome as Dr. Miller???