Saturday, January 12, 2008

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.

19 comments:

Richelle said...

I have an 18 month old son who has BPT. He was diagnosed at 10 months after being wrongly diagnosed at 10wks old with Epilepsy. My sons head tilt was apparent from birth but at 6 wks old he started to have seizure type episodes including the eyes shooting up on an angle. By 6 months his episodes were just 5 days of extreme irritability followed with the head tilt. He has at least 1 episode a month, with episodes lasting upto 7 days now. We too pray for an end to this, but we know the likely hood is that it will last for many years to come.

Martin said...

How did you finally arrive at diagnosing BPT? Did it seem like no one was listening to you or requesting your child be poked and prodded endlessly with one test after another? Also, what can I do to help?
After searching endlessly through the internet, medical schools, and local physiscians networks ,when our pediatric neurologist uncovered the articles describing BPT, we felt a great relief, as well as sadness. So far, the medical articles have proven accurate, except for it "resolving spontaneously" by age 2-5. Only the original article by Dr. Snyder has been accurate for us.
Thanks for the post!

Rikii said...

Like you, we did endless research on BPT, and it wasn't until we got video footage that the neuroligist formally diagnosed it.

We too were very annoyed at the medical profession. Our son was put on un-necessary anti epileptic medication for 6 months. Sheer determination and not taking the doctors word for gospel I reakon is the key..
Anyway read my blog for our full story at:

http://www.benignparoxysmaltorticollis.blogspot.com/

The Barnett's said...
This comment has been removed by the author.
Martin said...

http://bpt-martin.blogspot.com/
Richelle,yours is a wonderful post with great descriptions similar to our daughter. As you stated, epilepsy medicines do nothing for BPT.
We know how agonizing, and difficult, it is to get an IV line in a baby for sedation to be able to do the CT Scan and MRI. Our results were negative for any obvious signs of other problems, too.
The medical literature also has supported that there is no other problem, cranial or blood wise, causing the BPT. It is still a mystery.
Our Blog has new additions you have inspired. Thanks.
http://bpt-martin.blogspot.com/

Rikii said...

I would love to chat more about what you have gone through with your daughter, and maybe swap photos etc. I have an email address bpt@live.com.au

Tracy said...

Our daughter, nearly 6 months old, has been daignosed with BPT. At one month old, I noticed that she was awefully stiff and that her head was tilted to one side. I initially took her to a chiropractor who diagnosed her with torticollis. But she mistakenly thought that our daughter had congenital or muscular torticollis, which can be corrected with stretching and/or surgery to release the muscle. Our pediatrician thought the same and told us that things would be better once she got stronger and started sitting up. She started going to physical therapy at the local childrens' hospital and they gave an initial diagnosis of BPT, but none of the physical therapists really knew anything about this disorder and they too thought that stretching and time would help resolve this. We finally got her in to see a pediatric neurologist that was familiar with BPT just the other day and he confirmed that she has BPT. Although he's familiar with BPT, I really got the sense that nobody, including him, really knows too much about this. My daughter has episodes of vomiting, usually once a month or so, but she has not had any seizures and the vomiting episodes do not seem corilated to anything. Her head "switches" from time to time between being straight, to tilting to the left, then straight, then to the right, then straight. She alternates. Other than that, she seems perfectly healthy and is a very happy baby. My husband and I are quite devistated over all this, especially knowing that there is not much known about this rare disorder. We're now trying to find out all we can and seek out any medical help we can find.

Martin said...

Dear Tracy,
Knowing something was wrong with our precious, beautiful daughter but not knowing what was one of the most difficult years of our adult lives. My wife and I pursued finding a diagnosis relentlessly - she being a highly respected Occupational Therapist specializing in Traumatic Brain Injury.
When we finally were presented with the Snyder article from 1969 and the others that are posted, we knew we had something that was accurate. You should get this as a basis at a medical library or from your physician. Many of the other references to BPT online or in the medical literature are usually not fully followed case studies but anecdotal references or brief observations. I have found many comments on WEBMD and Medical school commentaries to be a mention of "something they read or heard somewhere" without referencing their sources, thus not credible or accurate by any means.
If you find something that helps your daughter, will you let us know? I have now published my e-mail here for quicker (and more private, if you wish) communication. WE have tried many, many medications and therapies, but usually you just have to let the episodes run their course while comforting her the best you can. I have posted some ideas on how to do this previously.
Hang in there, from everything I've read and experienced, the 'patient' comes out tired, hungry but without any lasting complications. Our daughter did develop some other illnesses noted in the Snyder paper, but most of the children in the literature did not. Again, she is smart, coordinated, beautiful (to us), and a very nice person.
Let us know how else we can help, and thank you tremendously for posting a comment. I truly feel that more children have BPT than are accurately diagnosed because it is so uncommon to most of pediatricians or Family doctors.

Anonymous said...

Dear Martin - thanks for your response. It just amazes me in today's day and age how little doctors know about this disorder. Our daughter was diagnosed with BPT at the CT Children's Hospital, but I said, I really got the sense that the doctor really had not dealt with this. We have actually now scheduled an appointment for her up at the neurology dept. at Children's Hospital Boston, which is supposed to be the oldest, most reputable children's neurology dept. in the world. We want a second opinion and want to know what else we should do, what we should expect, etc. We want to talk with doctors that know about this disorder and have actually dealt with children with this disorder, which they have. I would like to chat further off -line....can you please send your e-mail address. Thanks!

tracy said...

Dear Martin - that last comment was from Tracy...I can't seem to recall my password, so I posted anonymously. Sorry

Richelle said...

Hi Tracey, and all others that read here. I too would love to chat with other parents of children with BPT. My son has it too. We live in Australia, and so far I have not been able to find anyone here to talk to. My email is bpt@live.com.au.

Martin said...

For everyone that has asked and for future requests, my e-mail is:
martin.rivera@charter.net

I welcome all letters, comments, and suggestions to make this information exchange better.
Please do not SPAM or advertise personally on this site. Thanks.

Anonymous said...

hi my daugter 8 months old as been told she may have (benign paroxysmal torticollis! hes a little of our story.
During pregnancy two vessel chord was detected (under developed umbilical chord effectively). Doctors were uinable to confirm what this may mean (could be anything from Downs to structural deficiencies to renal issues or simply that the baby would be unaffected but definitely female). After birth she was diagnosed with slight click hip but sent home as usual. Three days later she returned to hospital with severe jaundice. Shortly afterwards she experienced a number of blue episodes (which ranged from just her hand turning blue to her entire upper body becoming blue). Hospital tests revealed nothing. Shortly after this she began to hold herself to one side for periods of time (head and legs to same side in a banana shape). Again tests revealed nothing but some form of epilepsy was suspected. These episodes lasted for anything between 2-8 hours. Eventually epilepsy and seizures were ruled out by some doctors (though others disagreed) and a diagnosis of Benign Paroxysmal Torticollis was issued. As well as this she also tosses her head violently from side to side most of the night - a problem as yet undiagnosed. She has also been confirmed as having eczma, click hip, lactose intolerance and reflux, with wheat and gluten intolerance also suspected. she now still as epoisodes for hours on end every few weeks, then vomits when shes going to come out of it.

chrstine said...

My daughter was diagnosed with BPT when she was 8 months old. She started having symptoms at the age of 7 weeks old. I was crying my eyes out my beautiful new baby was doing somthing that I didnt know how to fix, my husband was in Korea for the next 7 months and all the dr said to me was, I dont know why you are crying, she not going to die. I too thought was was having a seizure or even a stoke because it affected her hole left side, being that young. She is now 4 years old and her BPT is all over the place. When she got to the dizzy spells it lasted for 3 to 4 hours and was throwing up for the better part of it. She has to be in a dark room with no sounds and her head covered. Alexies episodes are now about 3 to 4 months apart. Now the drs are doing blood work for something else and he says that is common with BPT???? It has to do with high ammonia levels in the blood. Anyone else heard of this??? disneyprincess22@hotmail.com please put BPT in the subject line so i dont delete you
thanks Christine

Romi Giltner said...

This is a true blessing for me to of found these comments. We too have a daughter 3 1/2 that has had what we call her "spells" since birth.

At first because I nursed, it was thought that the head tilting was torticollis. So we followed the switching stretching rule, our doctor thought she may have tumors on her spine, so she went to a specialist who ruled out that & epilepsy. My husband and I were worried sick. When we went on car rides by the time we got where we were going she was having a spell. She hated the car ride home from the hospital and would scream everytime we went somewhere and her head would tilt, she was extremely tired after her episodes. Walking into wal-mart would trigger an episode instantly! I wouldnt even get past the check outs, walking in the door. Anywhere flouresent lighting was used, which is everywhere. We video taped a spell and took that and pictures in to the 2nd neurologists. No actual term used except migraine induced motion sickness seizures. Triggers are car rides ( she has to be in the center or its worse ) bright lights, sun at times, running and playing too much , being over tired We can see a spell coming on, she spaces out and gets a blank stare, her eyes do odd things then her head tilts either left or right. She cant walk from the vertigo and shakes all over Sometimes she gets sick too. its a frightening situation for all of us. She had a spell last night and our 11 year old was so scared for his sister. Everything in these posts is a match to our daughters symptoms. I too felt like everyone thought we were crazy. Her head is straight now, unlike allot of baby pictures,she is normal and beautful. She is able to tell us know when its coming and her head does stay tilted for some time, but less time as she gets older.

Martin said...

Dear Romi,
I don't think that we ever identified any "triggers", but during her spells we do cover all of the windows with heavy beach towels and keep light to a minimum. As she got to school age, she was able to attend and participate in whatever her heart desired, and with our blessing. Then, during her BPT, she would miss from two to seven days of school. The bright outside and inside lights were too much. Also, she would wear sunglasses as the symptoms weren't as strong, including inside the house, and that seemed to make her happy and functional. Also, TV only made her symptoms worse, so she would not even ask to watch it - a HUGE sacrifice for her! The neurologist wrote a note for her absences without any problems for missing school. Suzanne is bright and her grades are very good.

When she was around your daughter's age, she would run full speed around the house. Sometimes I would find her on her hands and knees, trying to get up and run, but her vertigo or whatever was affecting her balance made that impossible. Upon checking the calendar, her BPT was right on schedule. We thought this exercise was a trigger, too, but time showed it was just a coincidence. Some of the other families that have contacted us have episodes more frequently, and others less than we encountered.

She just completed her first season as a softball player with no problems from BPT. We have always encouraged her to do anything she wants to, despite her diabetes, BPT, and hearing loss. And she does. She will present her first guitar recital this Thursday.

louise said...

i have a 13 month old son who has jus been diagnosed with BPT he had a bad episoed when he was 2 and half months old his eyes were rolling up
hishead tilted badly to the left and he went stiff down his left side. He was wrongly diagnosed with cedrebal pausey as he suffers
more from stiffness and head tilting than vomiting and the other symptoms i have read although now he has started crawling and standing up on to the furniture i have noticed that he tends to be more clumsey and falls over a lot. His head tilts are almost always to the left and it occoures once a month like clock work which before i knew what he had found very strange and stressful its very fustrating that thier is no cure and nothing we can do to help

Unknown said...

Old post here but just wondering if anyone can comment on their child's situation with BPT now? We are not formally diagnosed but pur paed has spoken to a colleague when I gave him info on it and the diagnosis was in the form of 'Yeah that sounds like it...."

Kelly said...

My daughter Jasmine is almost 11 now after very distressing BPT for the first few years of her life ('Jasmine's Story' is somewhere online if you search for it). She is perfectly healthy, normal, smart, active, sociable and gorgeous now! We do think she suffered her first true migraine a few weeks ago after a huge couple of days over Easter and too much chocolate. Puberty and hormones are looming so we will see what the future brings. Kelly