Please, recommend a good DAN doctor

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MrsGold
Posts: 2
Joined: Sun Jan 24, 2016 5:42 pm

Please, recommend a good DAN doctor

Postby MrsGold » Mon Jan 25, 2016 1:20 am

My son is 2.9 y.o. Two months ago he was diagnosed with autism. 6 months before he was diagnosed with ASD I had put him on a GFCF diet. He started to sleep better/through the night.

I found a DAN doctor in WA and we did a lot of tests. We found out that he had 25 food sensitivities, many Vitamin deficiencies, etc. We started giving him supplements. This doctor prescribed Diflucan for 2 weeks. At the end of the second week my son had diarrhea non-stop and was vomiting all the time. The doctor told us to stop. With this DAN doctor I always had to suggest the treatment. I asked him about MB12 injections and he gave us the prescription. I didn't see much of a progress and that doctor told me that not all kids can recover from autism and maybe my son was one of them. As you understand I never returned to that doctor again.

I found another DAN Doctor in Seattle, WA. Again, we did a lot of tests. I continue giving my son the same supplements, MB12 shots, tried Nystatin for 2 weeks and Diflucan for 2 weeks. My son is vomiting every day again. He lost a lot of weight. My son always was a picky eater but now he is afraid of food because I guess he remembers that his tummy hurts when he vomits. Mouthing is another big problem for us now which he didn't have before we gave him Nystatin and Diflucan. I am losing my mind as my son is always high-pitch screaming. He is more in "fog" than ever before.

I feel like I am wasting time and money with these doctors. Maybe I wasn't lucky enough but I don't want to waste time and money any more. I believe there are Dan doctors out there who could help my son.
I need to find another doctor who really wants to help his patients. I am not a doctor and I don't want to experiment with my son's health. I need to find somebody who knows what he/she is doing.

PLEASE, recommend a good DAN doctor. At this point it doesn't matter where the doctor is. My husband and I are willing to travel if we need to.
Any advise is highly appreciated. Thank you in advance.

amndzon
Posts: 94
Joined: Fri Aug 10, 2012 9:05 am

Re: Please, recommend a good DAN doctor

Postby amndzon » Mon Jan 25, 2016 10:11 am

I'm so sorry you are going through this right now. I will tell you, for most of us, the age that your son is now is usually the roughest. My daughter was so much like your son was at that age. The vomiting, the gut problems, and the weight loss. She was down at 5th percentile and not thriving and just a mess of bloody diarrhea, eczema, and tantrums. I found a good DAN in Maryland where we live and he has helped a lot. He got us a long way down the road of recovery, but could only do so much. I had to figure so much on my own as most of do. My daughter is nine years old right now, she is so much better, not perfect and has some way to go. But she is now up to 50th percentile, is doing OK in school, and is making friends. It wasn't easy, we made a lot of mistakes along the way. She was a yeasty girl with many food allergies, and going GCGF and addressing both of those issues helped. A lot of the things we tried made things worse. After getting her mutations identified, it was apparent she was in the 10 percent of the kids that are overmethylators, and that B12, B6, and all the of standard treatments was going to make her worse and not better. You might want to go this route, you can do it cheaply on your own, or go the yasko route. Money was and continues to be an issue for my family, so we went went through 23andme for our genetics, but they recently doubled their price, so yasko is looking more like a bargain.

Reading your post reminds of me so much of what we went through. You will find the right doctor, and the right treatment. The tone of your post shows you have the determination and the will to get your son better. Good luck with everything.

Santosg
Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: Please, recommend a good DAN doctor

Postby Santosg » Tue Jan 26, 2016 12:57 am

If money is no object I think that Dr. Neubrander is the best way to go. No question in my mind. He is the biggest pioneer in the field, from the use of MB12 to the use of hyperbaric oxygen. It is expensive, but if funds are available, they are best spent with him, in my mind.

I understand why you're upset with the fact that you have to recommend interventions with the DAN. At some level, though, you've got to get use to being the primary 'doctor' for your child. There are no easy answers to autism and no way to treat the condition in a uniform manner.

You'll find that there is a broad commonality in DAN interventions. You're not going to find a doctor who really knows what he's doing. No such doctor truly exists. There are doctors that follow standard protocols and there are doctors who look beyond the standard protocols, based on lab findings and translational research. But none of them are going to have hard answers or easy remedies. So, for the most part, you're not going to find doctors that are performing out of the box interventions. Also, you are never going to know how a child reacts to a certain intervention without trying. So you've got to try, different things in different doses, in different cycles. Obviously, mitigate any unnecessary risks, but you'll never know how beneficial or negative something is without actually trying it on your child.

Mouthing is often associated with the MB12 shot and I have found this to be true in my experience with my son.

My son is also a 'shrieker.' He's got the most powerful voice I've ever heard on a child. The range of his vocal wails is off the charts. He does it out of excitement--sometimes I can identify the external stimulus and sometimes its something internal and I don't know.

Autism is exhausting. You have to keep a long term perspective. Autism is not going to disappear tomorrow. But if you act now, when he's young, you care going to lessen the burden of his autism. So what you're doing now is only going to show its true dividends in years to come. So you've got to keep it up.

Shortly after my son turned 2 it was clear that he was autistic. He was non-verbal. It was not looking good. So I just had to say: okay, this is what my life is going to be about for the foreseeable future.

IN the end, though, the only way to empower your son is to empower yourself. Become a researcher. Familiarize yourself with scientific literature. Be proactive.

MrsGold
Posts: 2
Joined: Sun Jan 24, 2016 5:42 pm

Re: Please, recommend a good DAN doctor

Postby MrsGold » Tue Jan 26, 2016 12:42 pm

Santosg wrote: Shortly after my son turned 2 it was clear that he was autistic. He was non-verbal. It was not looking good. So I just had to say: okay, this is what my life is going to be about for the foreseeable future.


Is he still non-verbal? If no, when did he start talking?
My son is also non-verbal.

Thank you.

Santosg
Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: Please, recommend a good DAN doctor

Postby Santosg » Tue Jan 26, 2016 5:24 pm

My son has apraxia of speech so the language question is complicated. Words will appear and they won't, he'll answer questions a bit and he won't. Today his maternal grandmother was visiting from oversees and he wanted into the room and said 'hello Nana.' He did it unprompted. He'll also say yes. Lot's of 'I want x' 'give me'. Prompted he'll say many words, recognizes objects, but you would not know he was already familiar with them through a non-therapy encounter. But he's actually following directions. I can tell him to 'put this on the desk' or 'come here and have some water'. His understanding of language was improved greatly and with it, and with steady improvement in his apraxia, he'll begin to speak. So, even if he's not talking, always assume that he's understanding at some level and you can increase the level of his language comprehension complexity.


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