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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Naturopathic is the only way to go
I would suggest finding a Functional Medicine Doctor who is Christian (I believe a lot of them are.) They are MDs, but look for the root cause and try to find a healthy, approach or give supplements first, before reaching for the prescription pad. They tend to be far more knowledgeable than regular MDs. I hope you can find one and interview him or her before you commit. All the best for you and your family.
That is not one I’ve heard of before thank you! I will look into that!
Sorry to hear about your challenges and I applaud your tenacity.
Two sources I would recommend to look for in your new community: Home school families (quite often, a primary reason for home schooling is that the child has a disability, so you're among friends who "get it" and who might be able to refer you to medical experts who also "get it"); the second would be the special education teachers in the schools--the "good" ones are very passionate about helping you find the resources you need, and they're passionate typically because they grew up with a sibling with a disability and that is how they got into the field.
Just my two cents/sources : )
Thank you! We are connected with other families and definitely have sought out homeschool families too- this was something new that I’m unsure of just didn’t know if I was right or wrong…still not sure. My oldest son says stay far far away from that hospital. I haven’t dealt with their genetic clinic so I don’t know anything about them. It’s just that I have no idea where his info would wind up at in the end.
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.
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!
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.
Yeah that is my concern. I ran into a nurse practitioner during covid who actually works for this hospital. One of her concerns was the jab, she told me the list of kids considered “high priority “ for the jab were kids like my son but my son is extremely healthy and not at risk. She said red flags went off because it was a list of kids eugenicst would want to take care of first.
God bless that nurse, hope she collects evidence where she can and sneaks it out to PV or somewhere. Brave.
Lots of good suggestions here. I don't know if he ever had any shots, but mercury and other adjuvants can cause neurological injury. Colloidal silver is supposed to help the body clear that sort of thing, good for all ages, us parents too. Good luck in your search, it seems like you're doing all the right things. Prayers sent your way.
I wish I would have gotten her info! It was the peak of covid, husband and I went into grocery store maskless. She stopped us in the parking lot and thanked us for being two of the few who wouldn’t comply. She said she had been a NP for however many years and she says “look I’m a nurse practitioner, I know vaccines don’t cause autism…but I don’t know if vaccines cause autism”. I had trusted everything up till the start of covid for the most part…it’s what got me to question everything and actually led me here. Now I just want to protect my kids and especially my son most vulnerable in the world.
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.