To start I’ve found out the local children’s hospital is a research hospital and is notorious for medical kidnap. Many parents have kids with special needs, I fortunately have an otherwise extremely healthy child but developmentally delayed with an unknown genetic disorder. For the first 5 years of his life we searched for answers. Over covid his pediatrician gave me concern so I moved him, this new doctor we saw once before I was concerned about how her practice bullied her into supporting things she didn’t believe. She then came out in support of the covid shots, which she was against before the bullying. I haven’t been back to her. My son was cleared from the neurologist, cardiologist, orthopedic, genetics clinics in our previous state. They had no answers so we do therapies and help him the best we can but haven’t reached out to any specialists in our new state. He is in a great school and is doing well but again we don’t know what’s causes his delays. I met someone today who told me about a program we could participate in that would draw his blood and enter him in a database to find “genomic” answers. He is healthy, he is happy, I have accepted he may never speak, I have accepted he will never live on his own. The last three years I’ve come to distrust most in the medical field, my son is amazing just the way he is. I know there is no fixing his issues but would you still look for answers? I’m torn between protecting him and helping him. I don’t know any doctors here to ask advice, any doctors I knew are from my previous state.
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Just because you distrust some doctors, it doesn't mean you should distrust ALL doctors. You're seeking help, and then rejecting it when people meet you halfway.
If you were dying of cancer, you would seek immediate medical help from the severe pain, but you won't treat your son with the same sense of urgency?
My point is he is 100% healthy, the hospital is questionable, they recently were in the news for medical kidnap because parents distrusted what they were doing. Girl wound up going blind temporarily from meds parents didn’t want. We will gain nothing from it right now, we would have to trust them to use his genetic info for good. I don’t trust the hospital, I had a good relationship with the other children’s hospital in my previous state. It’s ridiculous to question this hospital that takes away parental rights for questioning them? There is no “treatment” for my son, he is absolutely healthy which is what I said. He is developmentally delayed. We were cleared from every clinic, neurology, cardiology, genetics, orthopedics. I said that, my son is healthy and happy actually the happiest person I know. So you would enter your child’s dna into the database. Thanks for your advice but please don’t misconstrue - there is no “treatment” for him other than what we are doing- this would be a worldwide database that maybe might give us a label. That’s it, there is no magic fix
What are the 'developmental delays' you are talking about. It sounds like you don't need a doctor, seeing as you claim that he is 100% healthy. I would be very suspicious of them drawing blood for most developmental delays.
My partner and I had eleven children, and they all develop differently. Boys especially, take their time in terms of reading, for example. Schools have very rigid ideas about when kids should start reading, but we found that they do it when they are interested, not when they are forced to. So, they would go from not reading (oh, they are developmentally delayed, they said) to reading books in about six months when they were nine years old.
We have a regular doctor, I don’t have a regular pediatrician I trust so we are sticking with just a regular doctor. He is not a baby, he is 9 y and we have been dealing with doctors and clinics since he was 15 month old. The geneticist said technology will have to catch up, he went as far as tech would take us- he was released from the neurologist, he was released from the cardiologist, he was released from the ortho clinic, he was told he doesn’t need Pt anymore. We are in Ot and speech. there is no treatment available from a developmental Ped because he has no behavior problems, they medicate and he doesn’t need that. We did ABA until moving states but he doesn’t really need it because he is in school full time and doesn’t have behavioral problems, he is potty trained. He is sweet, loving, happy and physically healthy. There are no medications to help his delays, he is developmentally delayed not physically ill. I could take him for a blood draw to enter him into a database not knowing what they would use it for and hope to someday get an answer. I don’t trust this children’s hospital, that is my dilemma. He is my youngest of 6 kids, I’m not new to this. We searched for answers for years, he has been put under general anesthesia for MRI’s, we have done blood tests, over 5 years of searching, Ultrasounds, many many hospital visits till we ran out of places to go. He can only do what he can do and like I said previously I absolutely love him for who he is and accept the amazing spirit God has granted me the the privilege to raise. I just don’t know that it’s worth it to enter him into the database.
I think that you have eliminated all the possibilities, and OT and speech therapy may help. But not entering into some database, that puts a target on your back. I am just thinking of what happened in Austria in the late 1930s, when they targeted disabled children. Now is not a good time.