VDC test kit slider
VDC-Banner-new_468
VDC test kit slider
sperti-banner

Dear Dr Cannell: Vitamin D deficiency, Ehlers-Danlos syndrome, or abuse?

Posted on: September 27, 2012   by  John Cannell, MD

img

Dear Dr. Cannell:

I have a baby girl that I exclusively breastfed for the first 6 months. During her 6-month checkup in June, her legs were bent over the side of the table while the nurse leaned against my daughters legs to keep them from moving while she administered shots. When symptoms from the vaccines went away there seem to be some swelling in her leg, I took her to the ER where the x-rays showed multiple fractures. I asked about the possibility of my daughter having low vitamin D because I have it and I never took her outside or gave her vitamin D when I was breastfeeding her. The doctors at the hospital dismissed it and would not draw the test because the doctor said low vitamin D would not cause fractures. My daughter was taken June 8; she is still in Child Protective Services and is now almost 10 months old.

Now, CPS just does not want to look like they were wrong. “They jumped the gun too fast,” so to speak. This is a very small town and many people including some of the officials in the community know or are familiar with my family. No one can believe I did this and that CPS would take our baby from us. I have two other daughters 7 and 4 that are still here in the home with me. I feel like my hands are tied.

The lab informed me they still have a little bit of her blood frozen on file from the end of July. I do not know if this will help or not. Should I ask for an immediate Vitamin D test? I stopped trying to convince CPS a while ago because they were not listening to me, so I started doing my own research. That is why I contacted you.

First, I do not know how to prove it to CPS that my daughter had vitamin D deficiency. She was started on formula right away in June while in CPS care, even though I tried to still nurse her when I got to see her. She fully weaned sometime in July onto formula, but my daughter still was getting mostly formula since early June. My vitamin D level was very low about eight months after I gave birth.

Second, I have Ehlers-Danlos syndrome. I too have had multiple fractures including all of my ribs, my right clavicle three times, and my nose. I also read from a study that fractures are likely to affect people with Ehlers-Danlos. Also, isn’t it a 50% chance that my daughter has Ehlers-Danlos as well? I have not informed CPS of this because no matter what I say, they are right and I am wrong.

How do you prove this to CPS? How do you prove my daughter has Ehlers Danlos or did not have enough vitamin D at the time of the fractures? I have the x-rays; there are three sets if they will help. To satisfy CPS they want something concrete. More or less something concrete will be the only thing to get the judge to give my daughter back. Again, it seems to be whatever CPS says, goes.

I need a pediatrician in Virginia area who is knowledgeable about Ehlers Danlos and vitamin D. Any information you can provide would be greatly appreciated.

Mary, Virginia

Dear Mary:

I am so sorry but count your blessings that DA filed no criminal charges and, according to our phone conversation, thinks you’re innocent. Usually, charges are filed and the family is broken and someone goes to prison. Unfortunately, the DA usually has no control over the actions of CPS.

First, your baby’s vitamin D level after four months of formula will be out of the rachitic range now and the blood from July will reflect the formula she drank in June and July. If you had blood from June, after six months of solely breast-feeding without supplementation, her level would have been very low. However, you have the x-rays from June and they probably show subclinical rickets if good copies are assessed by a knowledgeable radiologist. I have sent a copy of this reply to such a radiologist; perhaps just his reading of the x-rays will help you get your baby back.

Second, you are right, in most types of Ehlers-Danlos, there is a 50% chance your baby inherits it. It has been misdiagnosed as child abuse before.

Redlands mother stung by untrue suspicions presses for accountability in child abuse inquiries

Ehlers Danlos syndrome is diagnosed by genetic testing as there are many varieties of genetic abnormalities and many different types of signs and symptoms. Ehlers Danlos syndrome can definitely cause fractures.

Bar-Yosef O, Polak-Charcon S, Hoffman C, Feldman ZP, Frydman M, Kuint J. Multiple congenital skull fractures as a presentation of Ehlers-Danlos syndrome type VIIC. Am J Med Genet A. 2008 Dec 1;146A(23):3054-7.

Third, I think it more likely the fractures were caused by vitamin D deficiency, which, because of the vitamin D in formula, can only now be proven by the x-rays. I think this because your levels were low and your baby had no source of vitamin D the first six month of her life. I’m glad you asked for a vitamin D level in June and that the doctor documented your request.

Fourth, be extra polite to CPS. I know they may seem tyrannical at times, but they deal with horrendous things sometimes and are hardened by it. Keep your baby in mind when you talk with them.

Fifth, I am asking readers of this newsletter to respond if they know of a pediatrician in the Virginia area who is knowledgeable about Ehlers Danlos syndrome and infantile vitamin D deficiency, as both can cause infantile fractures. I will forward any responses on to you.

I will keep in touch with you until this injustice is over.

John Cannell, MD

6 Responses to Dear Dr Cannell: Vitamin D deficiency, Ehlers-Danlos syndrome, or abuse?

  1. Ulf

    What a dreadful situation!

    I wonder what is the half-time of vitamin D blood level ?

    Ulf Caneman, Sweden

  2. Jim Larsen
  3. MaryT

    I can totally feel this woman’s pain. Not with child abuse or breast feeding…not even with vitamin D deficiency although it is present, in my husband’s case, I am sure. I believe that an unhealthy gut ( diverticulitis, an intestinal fistula that attatched to his bladder, surgery on both issues ) has caused a B12 deficiency. He needs bloodwork done to rule out Macrocytosis. He has displayed some awful behaviors and I know it is all connected to his gut. I am being ignored on this.

    My intention was not to hijack this post, just wanted to share my frustrations.

  4. Umileritac@aol.com

    Mary,

    If you’d like, Email me at Umileritac@aol.com.

    I’d be happy to do some research on this with you.

    Hang in there,

    Rita

  5. frerichj

    Mary,

    My Goddaughter/niece is going through the same thing.

    My niece suffered from a fractured rib at one-month-old. CPS immediately got involved, and removed my brother from the house. He was able to return home 6 weeks later after the Family Protection Plan expired. Meanwhile, the doctor determined the vitamin D deficiency was the cause of the “fracture”.

    5 months later, CPS’s doctor releases a conflicting report which says the vitamin D deficiency was not the cause of the fracture. My brother has been indicted and it’s being reviewed by the prosecutor.

    What was the result of your situation? I know they should have an expert review the medical details. In my mind, this should be a radiologist to see if the “fracture” was really a fracture.

    I’m lost, but hoping for the best,

    Justin

  6. Rita and Misty

    The above email address is no longer one I routinely review. Please ask Vitamin D Council for my contact info. I am happy for VDC to provide my work email and/or my mobile number.

    Be well,
    Rita

Test Your Vitamin D Levels at Home!

Our in-home Vitamin D Test Kit is easy, affordable, and an accurate way to find out your Vitamin D status.

order NOW

We need your help!

We're spreading awareness on Vitamin D Deficiency
Donate NOW
Latest Articles
img
Vitamin D Council podcast 15: Professor Prue Hart

Dr. Cannell and Professor Hart discuss her research on light therapy for the treatment of MS and explore additional health benefits of sunlight.

Weekly Newsletter