I am at this moment in time a very hurt and disillusioned mother.
Because of the astute persistence of a certain autism mom who kept telling me to check Neubrander's site (the neurologist who came up with the methyl-B12 protocol), to check my pharmacy, to check my shots to see if they were the strength they are supposed to be according to Neubrander, today,I find they are half strength. Half strength.
Half strength means, not the proper protocol - the wrong protocol. Six months, and no one would have even noticed in Dr. Bock's office that we were getting a sub-standard MB-12 shot.
I have to question Dr. Bock's practice now and that pains me a great deal. I especially question his nurse. Do you know what she said to me? "Oh, well, give him two shots a day." I told her that my son had just been through hell this past weekend with severe constipation caused by her mistake, and there was no way I was giving him two shots a day, and more importantly, THAT IS NOT THE PROTOCOL and Dr. Neubrander clearly states this on his website. It's just wrong, plain and simple, and she doesn't know this?
This morning, I checked with all of my autism mom friends and asked them to read me their prescription. Sure enough, theirs reads differently than mine. Theirs is right.
I have about had it. I called and left a message for the nurse who was responsible for calling in the initial prescription. I want answers. Did Dr. Bock write the prescription wrong? Did the pharmacist read the prescription wrong? What happened? The fact that I never would have known leaves me feeling very empty.
Even my homeopath I saw today in the health food store knows better; he was apalled.
My son is okay. He survived the overdose on charcoal. He was not harmed by the low amount of B-12. We will order the new shots at a higher price from the correct pharmacy. We eventually will talk to Dr. Bock, if he is ever available. I might have to wait until my appointment January 29, but you can bet I am faxing a letter tomorrow to be placed in the chart.
It's just that I have lost confidence in my DAN! doctor, the one thing in my life that I thought was going right, and now I don't know how to feel. I emailed another DAN! doctor six hours away from us in Florida. We heard her speak last year and she is great. She is Dr. Kartzinel's partner, so her practice is slammed, too, but the thing about her is she is accessible. She emails you back. She is very available to her patients and that is what we need. At least she was last time I checked which was back in September.
I respect Dr. Bock's knowledge and felt so privileged to get in with him. But, now, the bloom is off the rose, so to speak.
Perhaps he can redeem himself. I cannot take advice from his nurse anymore. She is just giving out information that is wrong. Dr. Bock has no other nurses. So, it's me and their voice mail. Me, my anger, and their voice mail.
Slowly, my glass of wine is taking the edge off of the anger, I am slowly releasing my resistance. What will be will be. If we need to switch doctors, we will. We will certainly get better shots, the right shots. It's just six months of my son's life, that's all. WTF?
11 comments:
Please be very sure your next DAN doctor is available before you switch. All of them are too busy.
Yes, I guess they are. Another friend asked if I could find a pediatrician who practices DAN!. There is no one around here that any of us in the autism society have run across.
For the first time in a long time, I am left feeling rather lost.
You're not lost Sweetie.
You are on your way to the right team.
You are a good mommy and you are doing everything right.
Hugs to you and Lib.
I concur with Michelle. Your doctor is making his/her way to you right now.
Love to you both.
Visit Missouri, we've got a great DAN in Kansas City.
(Not where I live either, darn, but worth the drive)
Hi there.I stumbled across your blog while searching for info on yeast die-off for my 6 yr-old son with autism. You sound like a wonderful mom! I feel your frustration- it's so difficult to deal with situations like this. Just when you think you are in the best hands!! If you are still in the market for a new DAN! doc, we have a fabulous group that we love & they happen to be in Melbourne, FL. We see Dr.s Jeff Bradstreet, Rossignol, & Scott Smith (PA- who we see exclusively) and could not be happier. They each have at least one (if not two) autistic children themselves, and they see more children on the spectrum than any other practice in the world. (They also have more recoveries than anyone out there due to the large number of patients they see)They are truly on the forefront of everything biomed and so accessible- we really did not have to wait that long for our initial consult and we always talk live to someone when we have question/concern. Their # is (321) 259-7111 if you're interested. We have friends traveling from as far as California to see them- can't say enough good about this group of docs. We've kissed a lot of frogs to find our princes!
Kathleen,
I think we just come full circle. Bradstreet and his group is who I first called when I found out about the DAN protocol. We were trying to get an appointment when Hurricane Ivan came along and almost wiped our city off the map up here in the Panhandle. We couldn't do anything for awhile. I will certainly consider. Love the idea of a PA to oversee, as well. Thanks very much for the information.
Your frustration and anger are totally justified.
You may be able to compromise, knowing that you will need to tell the nurse what you need, rather than her telling you. If you can run the show around there it might work. What a pain to have to take the lead, second guess, double check, all that, but future generations will thank you for being the pioneer that you are!
love.
There is a group of moms from Tallahassee that see Dr.'s Bradstreet, Rossignol and Scott the P.A. We have been able to get Dr. Rossignol to come to Tallahassee twice now to see patients and give presentations at FSU.
I have been hearing abt the MB12 shots and I am in Kansas. My almost 7yr old daughter is autistic. She is enrolled in a sp ed school and is academically not so behind, but her commn. is very minimal. Pls tell me does it help?
Urvashi:
Look up Dr. Neubrander on Google. He invented the methyl B-12 protocol. He clearly states the kinds of improvements he has seen with kids. I will let everyone know what we see with my son after we have been on them longer. Take care.
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