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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From my 20 years of being disappointed in doctors started out when I was a child...
I would try seeking a "functional medicine" doctor for getting access to a doctor who is more interested in looking for a root cause. Insurance probably won't be interested in helping pay for it, which with what we all know here is practically a green flag.
As for bullying. Remember two things, one is that there are conservatives in the system and they are stuck having to play chameleon and playing the game and then dropping hints in private is necessary and sometimes draws them out, and they are hyper-competent when I have found them. Two, I've found it worthwhile to mention at the nurse intake stage that "falling through the cracks of the medical system has been traumatic and you need to take things at the pace you/your family can handle". This is a very disarming way to let them know you have no tolerance for bullying, it seems either to be "speaking their language" or perhaps has legal significance on a medical record. ---- As for medical records themselves, watch them like a hawk for accuracy. They can get super off track and be hard to change if not noticed near the time of writing.
Other than that... I suggest you research a few things. A good functional medicine doctor would be informed on these topics, but these are areas of research I found doctors (even when it's their own field of expertise) particularly lacking that I know can impact development/neurological condition...
Look hard into allergies/sensitivities/hormone disruption. Contamination is a serious problem, and children now are growing up in an environment full of weird things that didn't exist very long ago. Your child might have a sensitivity to something that they frequently come into contact with, and anything that causes inflammation or hormonal disruption may be hard on a person's neurological health. And sadly many things even well-informed people think are safe have hidden "gotchas".--- For this, I'd suggest researching inflammation/histamine/mast cell issues. Also, look into vegetable oils and endocrine disruptors.
On a different note, check if their blood pressure is high enough when standing/doing things. I had doctors ignore my signs of low BP as a small child. As it got worse, my brain just wasn't getting enough blood flow to work properly a lot of the time... I imagine this could certainly lead to speech delays. For this try researching POTS/dysautonomia...... This is also worth looking into because the issue is often able to be treated. And very commonly not diagnosed for 10-15 years after the first symptoms are seen.
-- Lastly, if your child is otherwise healthy and happy. Try not to feel or let others make you feel like you must constantly push for action. Long-term stress is damaging to the health of everyone in a family and it's okay to take breaks and revisit things to see if there's new research or clues every year or two.
Thank you for all the info, I definitely am always willing to look into things that can help my son progress. My husband and I also don’t like to stress him out, he hates going to any type of doctor now. That is also part of the reason why I would be reluctant even subjecting him to a blood draw. Getting haircuts and going to the dentist are difficult enough.