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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It seems your most urgent need is for a trustworthy dr, before needing an answer about the genetic testing... is that right? Look for naturopathic, functional, or orthomolecular m.d. It wouldn't even have to be one in your immediate area if they do virtual appointments
Yes, we have been happy so far with his progress at school. My question was more “am I crazy not to enter him into a genetic database to try to find an answer when I know the hospital doing the database is known for doing questionable things”. We know there is no magic fix, he is delayed and he can only do as much as he can. We do private therapies and we have him with the best teachers and services. We just don’t know why he isn’t like his peers. We would never let him participate in research because he is extremely healthy, just developmentally delayed.
So you say he is doing fine at school, what is impeding him?
And you are not crazy for not agreeing to gene analysis or even worse, therapy.
We realized when he was 15 mos old he was not progressing. He is 9, developmentally like a toddler, extreme hyper mobility, he can’t hold a pen/pencil like kids his age. His oral motor/tongue is immature and we believe there is motor planning issues. He is happy, loving, tries to communicate through some sounds and gesture and is learning to use a speech device. We have him in speech and OT privately and in an amazing school. We also work with him trying to learn sign language. Unfortunately with developmental delays it is at their pace, they have to do it. We don’t know what the future holds but we accept that he will likely always need to be taken care of. We have accepted he may never talk. I just don’t know that an answer will make any difference in our lives. Is it worth it to trust this children’s hospital with my sons dna? Especially when it will likely never make a difference. We are blessed that he is extremely physically healthy, no allergies, even amazing oral health. He is a joy to have in our home even with his challenges. He has the most amazing laugh.
In my opinion there are no solutions in looking at his DNA, but it is only my opinion. You are obviously doing all the right things.
Also, you are blessed with a sunny soul in your house.