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.
You're viewing a single comment thread. View all comments, or full comment thread.
Comments (23)
sorted by:
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
Google Dr Jeffrey Bland & look on Utube for the subsciption site for Dr Eric Berg. As it may be long shot but some doctors have come along ways when it comes to diet and what we eat and alternative medience. With Dr Bland working with fathers doctors on dad who dementia whom could hardly talk or able to dress himself with syptoms getting progessivley worse. Dr Bland suggested he try injectable B1 and I believe B12 or 6 and every nearly normal within 3 months. Either way, best of luck!
We have thought of that, I have many friends here who have suggested that. He is a picky eater but we did start protein smoothies to help balance. I will definitely look into this.
Prayers & best of luck!