Not knowing the future for Nathan but knowing we are headed in a correct direction having found a pediatrician who listens to what I am saying and is interested in learning as much as he can from my son. I feel like my son is finally getting the concern he deserves, and the correct diagnosis.
With Autism being so common, it was the natural assumption for many. If you hung out with Nathan and didn't know about Hemihypertrophy it would be a question.
The day Nathan was born I put my fingers around his legs and felt a difference in the circumference, I also noticed a difference in the length. I mentioned it to Dr. Slade who looked at him and didn't notice, but checked his hips.
A few months later I switched pediatricians and Dr. Ford would do the same thing. I continued to notice this and at his second birthday appointment. I said, could you please look at his legs. At this point he looked again, and wanted to know how he missed this. Instead of having more concern for his leg length difference the stupid shots are the constant focus.
To this my anger and frustration surmounts REALLY, REALLY, SHOTS ARE YOUR FOCUS?? DRILLED INTO YOUR HEAD BECAUSE THE STATE MAKES IT MANDATORY. You missed something all right your focus was too much on my son getting his shots and not enough on my son. And when you did talk me into getting a shot, he stopped saying the word up. Now I don't want to go into the Autism and shot debate, that was lied about by one of the top doctors who admitted and got into trouble for it, Dr. Wakefield.
Enough parents have noted the halt in speech and shots, that it needs to be looked into more and we need to titre more kids rather than put more vaccines into their bodies in my opinion. Especially Army Brat kids, how many antibodies did my kids get from me? any? I don't know. The doctor said you can't titre if they haven't had a shot, because it won't measure anything. We talked about the chicken pox shot my daughter was titre for and didn't need a second dose.
Again I have switched pediatricians and AGAIN a good part of the conversation is once again the shots my son is missing. I want my son titred. Measure what his body did with the vaccine before you go putting more into it. At least he is trying to explain to me about why this doesn't work if your child doesn't have any vaccine to measure antibodies, but I also feel he doesn't know that much about the subject, and will be studying up on a few things before Nathan's next appointment, July 13th, and I feel like shots will be a HUGE part of his agenda, or will he look at my sons records and realize the importance of the blood test and MRI and sonogram. Which is where I feel the focus should be. At this point all three pediatricians have been so programmed to look at shots, that they don't look at the big picture CANCER could kill him first, and at first I didn't know of any kid with Hemi that did die. Now I do, so my hunch was correct, this SHOULD BE THE CONCERN if a doctor sees the limb difference and all else should be ignored until this child gets a sonogram and blood test schedule.
What did you succeed in getting the shots? some mandatory sentence. What did you do? caused months, no years at this point to the mother as she wondered if this should of been dont. Even the doctor from Emory didn't mandate the importance of the screenings...just come back for a sonogram in 6 months (ummmm that time has long since come and gone, and it's been a year.) No sonogram and no blood tests that I know of have been run on my son for cancer.
Doctor, your saying his bones and muscles are affected by this condition?.....and his immune system is different from his cells in his bones and muscles. ummm later you talked about how his brain is also affected by this same condition. So do shots cause changes in my sons brain? I don't know but I also know if his brain isn't looked at first you have nothing to measure it by and you still wouldn't have enough data to note this. What causes one child who has the ability to speak to control his speech so much as to give up his ability to communicate? You can't make a child talk, if they don't have this connection.
Peter Kulish successfully treated a girl with hemihypertrophy using a non-traditional therapy that he discusses in the prologue to his book, "Conquering Pain". He identified the cause of this disorder as being due to the chicken pox virus--it blocks the growth hormone signaling pathway on one side of the body in the same way that it causes the shingles to only express on one side of the body due to how it attacks the nerves in the spine. His therapy was successful, but did not involve any new drugs--thus the lack of the medical industry adopting the solution.
ReplyDelete