Benign Paroxysmal Torticollis, or BPT, is NOT Epilepsy

Although children with BPT exhibit seizure like activity, with arm, leg, head or other movements described as shaking, jerking, or limbs extending and contracting, I am not aware of any BPT diagnosed child actually having epilepsy or showing any sign of abnormalities on a variety of tests, including lab work, MRI's, Cat Scans, etc. in the brain.

Also, I am not aware of any BPT patient in contact with me or in the medical literature that has shown any benefit to being on anti-seizure medications. The cause of the BPT is unknown and these medicines are treating a known cause that doesn't exist in these children. Usually after a trial of several months without improvement of the BPT symptoms, the parent decides to discontinue the medicines and realizes, thankfully, that it must be something else medically. Remember, most Doctors have never seen or read about BPT, as very few documented cases have been published and followed for the length of the BPT to resolution. Dr. Snyder did this in 1969 and most recent articles use his publication as a reference and quality study.

Epilepsy can be diagnosed, in my experience, more easily and only then should these potentially dangerous (on major organs) medicines be given to infants. Even more important for the child's future is that a misdiagnoses of epilepsy could haunt this child in adulthood when found in their medical records when it comes to insurability, and possibly employment for certain jobs. These comments and opinions I offer from my own research and experience with BPT and working in the medical field ( not as a physician) my whole career. Please use them as a guide to develop your own perspective and conclusions.

Another child with BPT -

Here is another child's blog with BPT.Excellent descriptions -thank you for posting it for everyone to learn from. It is clear how much you love your son.
www.benignparoxysmaltorticollis.com

Emotional Stresses of loving a child with BPT

We aren't really sure exactly when we noticed Suzanne was holding her head on her shoulder (tilting), but pictures we recently dug out show that it was probably from birth. The Doctor had to use forceps to deliver her, and I always wonder if that was part of the cause. We will never know.

My wife probably knows better, but she started throwing up, crying, and getting really fussy during the first few months of being born. [She still gets irritable a few days before the next episode is about to start, kind of like a warning.] Then she had the seizure like episode that sent us rushing to the pediatrician. Again, he told us all kids get those, and that to expect it when she had fevers. Being our first child, it scared the hell out of us! Something wasn't right.
It took us a year of heartbreak, worry, grief, crying, frustration, anger at God (by me) for letting a little, innocent child suffer so, and many more emotions before we successfully uncovered BPT.

A note about our wonderful pediatric neurologist. He showed a great amount of interest early on, even sharing that he wanted to share the pictures, videos, and case of our daughter at a conference in Barcelona, Spain. He never did. Disappointing because we thought this might get us more information on what approaches we could take. Then, as she got older, and different medications were tried with little or no success, his interest waned. We learned how to manage her "episodes" with little outside medical help, and she hasn't seen him for years. We are going to make an appointment to update him and keep BPT awareness in his practice current with Suzanne. He did prescribe Migraine meds that helped for a period of time, but we found as she could communicate better that the safer Motrin was giving her just as much relief.

My wife's' employer has been very, very understanding and gave her the Family Medical Leave Act coverage on an as needed basis for 2-14 days at a time. Although this is unpaid leave, it protects her position at work. Also, we had some help from family.

How we work it is that I am able to take a half day off during the worst parts, usually the first 24 to 72 hours, then my wife would come home around lunch time so I could go to work. Sometimes we had to take personal days or vacation time, because your child being sick does not permit you to take sick leave. Sometimes we were so tired or mentally worn out that either one of us called in sick for a day or two. We have been doing this for almost ten years; although, the last couple of years Suzanne's episodes are of shorter duration and intensity. We understand that the BPT resolves itself spontaneously within two to twelve years - we must be on the 12 year track.

She now gets migraines or headaches with the eyes slightly rolling back into her head, vomits, and sleeps. We discovered early on that a cool, wet washcloth on her forehead across her eyes really, really gave her comfort and helped her sleep. This was a time my wife and I could rest some, because after each episode, sleep seemed to give her a break before another one came up, usually between 30 minutes to several hours later. I don't think she ever threw up while asleep. We learned to always keep a container or bucket or trash can nearby for her to throw up because there was no time for her to get to the bathroom. Also, she usually did not want to eat anything or drink anything until the episode was all over. If she did manage to eat some saltines or drink some clear liquid, she would immediately throw it up until she was dry heaving. Nothing could have been left in her little stomach. Obviously, this was a cause of great distress for us and a feeling of hopelessness. Also, we were concerned of the acid reflux going through her throat so much. The Prevacid or Nexium really helps. Let me assure you that nothing can replace the comfort of being there with her and for her. She sometimes asks why this is happening to her and no one else, but she has learned how to cope and accept what she has. The best we gave her is that we will always be there for her, no matter what.

At times my wife and I felt we were near the end of our wits, but watching how a tiny little person could deal with something like this and be totally happy when it was over, usually with a huge appetite from not having anything to eat, let us know that we could do better. Hopefully, she never saw us cry or be sad because we kept those emotions behind closed doors. We wanted her to be positive and have hope even when we had doubts or frustrations. Oh, it is also so very important to be supportive of your spouse during these times. Everyone can be at their weakest points at separate times or even at the same time, but recognize this and realize that it is the situation, and not the person that is making it hard. Those times always pass, so don't accuse or blame anyone, even yourself, for the BPT. So be there for each other, too.

A couple of other items to be posted later: we did have another child, after much discussion and research on the possibility if this runs in families -he does not have BPT; she developed hearing loss around 2-3 years(mentioned in the articles), then diabetes around six years (also mentioned); she also wears glasses 'sometimes' and this helped with some of the minor headaches. It looks like most kids just have the BPT. You can imagine how much energy, time, and money this has taken. Despite all of this, she is very smart, popular in school, knows that her medical situation does not limit her to do or be anything she wants and has, what I think, is a very positive outlook on life.

We welcome all comments or questions on this site. Thanks for visiting.

BPT (benign paroxysmal torticollis)-Finding others with similar conditions that are Rare

Makingcontact.org is a good place to search for rare diseases, conditions, or medical puzzles - like Benign Paroxysmal Torticollis. I have been informed and assured others have experiences similar to ours. It is anonymous, but you can request to have your information available to others you choose.
I hope this helps.

Medical Journal Benign Paroxysmal Torticollis articles

Here are the articles that helped us arrive at a diagnoses.

Amer J Dis Child – Vol 117, April 1969 pg. 458 “Paroxysmal Torticollis in Infancy” by Dr. C. Harrison Snyder, New Orleans

“Benign paroxysmal torticollis in infancy” Thierry Deonna & Dorothea Martin
Medecin-associe, Service de Pediatrie (Unite de Neuropediatrie)CHUV, Lausanne, and Basler Kinderspital, Basel Switzerland pg 956-959

Clinical Pediatrics Vol 23 No.5 pg 272 May 1984
BPT in Infancy by A. Hanukoglu, E. Somekh, D. Fried

Developmental Medicine and Neurology, 1988, 30, 407-412
Article BPT in Infancy

The Journal of Bone and Joint Surgery Vol 74-B, No. 3, May 1992 Pg 449-451
BPT of Infancy

BPT of Infancy
Dr Herman A. Cohen, Moshe Nussinovitch, et al
Pediatric Neurology Vol 9, No. 6 pg 488-490 (Israel –published June 7, 1993)

Pediatric Neurology Vol 19, No. 3, pg 236-238
Electromyographic Study in Infant With BPT
Seiji Kimura, MD & Atsuo Nezu, MD

Clinical Pediatrics September 1993, pg 564
Dr Sule U. Cataltepe, & Todd F. Barron, MD
BPT Presenting as “Seizures” in Infancy

ORIGINAL POST: Does my child have BPT -(benign paroxysmal torticollis)?

ORIGINAL POST: BPT or Benign Paroxysmal Torticollis may be more prevalent than the literature in medical journals acknowledges. I am the father of a beautiful girl that has this diagnoses for 9 years and 10 months this January 2008 - much longer than I frequently find quoted as an answer by many web based MDs. They typically quote from one of the journal articles I found that this will only last about 2 years and resolve itself. Yet many other articles state experience published that BPT could continue for around 10 years - my experience with our child. I also have a younger son that does not have BPT.
My wife and I have kept a journal, including pictures, videos, and medical records and are interested in sharing our experience and data with anyone interested. We are not physicians but both work in the medical field.
The first sign we had that something was wrong was the head tilt in the first couple months of being born-mostly to the left, but sometimes to the right. This continued for about 1.5 years until her neck became stronger. Episodes of vomitting, seizure like tremblors, sensitivity to light, headaches progressing to migraines, inability to stand or walk during the episodes due to dizziness and imbalance, and sleepiness have occured regularly every 12-14 weeks without fail.
She is quite smart and developing normally, but like some of the children in the articles we have, she has hearing loss , uses reading glasses occassionally, and then became a type I diabetic at age 6.
We somehow are living a "normal" life and are lucky to have good jobs and insurance to meet most of the expenses.
This is a quick summary to start this blog so that others may become aware and use as as a resource in getting information about BPT or sharing some that you may have. Eventually we want to post pictures and videos so that you can "see" what we are talking about. Mostly, we hope to help others avoid or lessen the tremendous amount of expensive, time-consuming testing, x-rays and MRIs, blood work; including the fear and sadness of not knowing what you may be dealing with. We also had our daughter try different medications (anti-epilepsy, beta blockers, adult migraine medicine) that were experimental in nature to treat the symptoms with little or no effect. She does take Prevacid for reflux (GERD) and children's Tylenol or Motrin when she has the episodes. If anything else works, we have not found them yet. We decided not to use her as a guinea pig with more dangerous medications because the literature all states that this will eventually reolve itself with time. Our prayers have not been answered yet for this to end.
I hope this gives someone a face to what their most precious child may have so that you can move forward in becoming informed. Two of our first pediatricians misdiagnosed what we explained what our child was going through as common pediatric seizures from possibly high fevers. Clearly not what we described. We have great faith from physicians, but there is still a lot that is not known, and some are reluctant to admit they do not know. Fortunately, our pediatric neurologist kept listening to us and digging deeper in the literature until he found some articles that accurately described what we were observing.
I hope this may shorten that that time frame to sense the relief we felt in having the right information in what we were dealing with for you.