Thursday, March 8, 2012

BPT and Hearing Loss

My daughter was diagnosed with BPT after an excrutiating first year refuting many misdiagnosis', as can be seen during the early history posted here. We noticed something was wrong in the first six months of being born.
I post this because the earlier studies on BPT mentions a causal relationship with hearing loss. Suzanne was diagnosed with hearing loss at 3 years of age (she also became Type1 - insulin dependent at age 6) and has been wearing hearing aids ever since - not covered on most insurance plans!
Since then, I have heard many questions about hearing loss on the Facebook forum, usually from families with no prior history of auditory problems. Although I can find no proof, probably because of the ignorance of the medical community and the lack of profit from such a "small" group of patients ( after all, they all "grow" out of it, right?), I personally believe there is a relationship there somehow. I can not explain it, but believe there is an auditory, imbalance, spacial connection somehow.
Incidentally, Suzanne is a straight "A" student, typical teen, with a very mature awareness of her physically tested past. Her BPT lasted 10 and a half years before "resolving" itself. I can not remember the last time she had a migraine headache - probably more than a year ago, but she can get strong headaches that we treat with an Advil type analgesic with higher doses - 400 mg four times/day.
I hope this helps answer some of the recent inquiries I have had.


Anonymous said...

Hi I am the mother of a beautiful 16 month old girl named Ziven. She was born completely healthy with no complications and I had an easy pregnancy.She was was fine until after her 2 month checkup when she had her first vaccines. After that I started noticing that she held her head to the left side a lot. She rolled over very early and had full range of motion just tilted her head. Her pediatrician told me she was fine and would grow out of it. At 6 months she was alternating head tilts 1 week to the left (more severe tilt) 1 week straight, then a few days to the right in a repeating pattern. So my doctor recomended that she see a physical therapist through early childhood intervention. Developmentaly she was very advanced. At 7 months she was at a 11 month level or higher physically and social/emotionally. However she had the head tilts so we had an xray and eye exam which both came back totally normal. She was then seen by a torticollis specialist (on a straight day of course) who looked at me like I was crazy. The physical therapist then suggested bpt because she had never seen a child with tilts that changed sides before. However she has never had any episodes or seizure like symptoms, has never thrown up (never even had the flu), and her mood is the same whether she was tilted or straight. We stopped physical therapy because she didn't need it since she had full range of motion. At first she used her right hand and side more but only when very tilted to the left. At 12 months her development was evaluated again and she was at a 18 month level in all areas! I love my daughter so much and tried not to worry since the tilt didn't seem to affect her too much but always felt like something must be causing it. Now at 16 month I still notice the tilt but not as severe and more spaced out. She will be tilted one way or the other for only a few days then be straight for about 2 weeks. She was never officially diagnosed with anything but since the tilt switches sides what else could it be? Sorry for the long post :) I just wanted to make sure I didn't leave anything out. Seems like we have had a really easy time with this compared with most and I feel for all the parents on here! Does anyone else have a child with BPT that only had a head tilt? Also neither me or my husband have migraines. I am expecting my second child and worry that she too will have the head tilting issues. I am starting to think it had to do with the vaccines and no longer vaccinate her and my second won't have any. Thanks for reading!

Anonymous said...

My son was officially diagnosed bpt by a neurologist who specialized in movement disorders after a lot of testing. His main symptom was the head tilt you describe varying from right to left. I had the same thing him seeing specialists on days he was normal finally I brought a history of photographs and the identified it as bpt because of the fact it alternates sides. He is very healthy otherwise but did have 3 seizure like episodes overall in his life. Like your child he is extremely advanced. He started reading at two on his own and is extremely ahead in most areas. He is now five and had outgrown the tilting but it has been replaced by migraines with severe vomitting when he has an "episode" that has only happened once in the last year. I have a daughter who is three with no sign of bpt but now have a newborn who is five weeks and randomly started the head tilt last week. Good luck with your new little one!! I am thankful for all my beautiful children with all their ups and downs!!

Anonymous said...

Hi, My daughter is now 10yrs old but was diagnosed with BPT at 1yr old after having bouts of head tilts to different sides and also vomiting episodes in the night along with what look like possibly seizures upon reading about BPT in more detail.
Her episodes did become less frequent and by 3yrs she was only having them 1-2 times a year.
She to had physiotherpy for her neck but once we said it changed sides they said it can't be torticolis and discharged her.
She had eye & hearing tests again finding nothing eventually her doctor at the hospital said she thought it was BPT and said she would like to do a scan on her brain when she was about 6yrs old.
This happened but nothing was found. Since then she has not had many bouts maybe 1 a year but recently she has been having dizziness, fainting, stomach pains, headaches & sickness this has now gone on for a few months and we thought it was her hormones as she has just started her periods.
Then remembered what the doctor said "this may come back in her teens as vertigo & migraines"
We have since been back to the doctors who is refering us back to the hospital. Our only concern is we have moved area so it is a different hospital and they may not be aware of BPT.
I also think there might be something correct about stomach problems as my daughter has had these since a very early age also.
Did you get told it could reacure in later life? Thanks for Reading.

Anonymous said...

No, I have not heard of any symptoms coming back, but am aware of vertigo and migraines as noted symptoms that may continue after the neck torticollis stops. also, my daughter and many other kids have or had reflux, which can be treated orally. She does not take any medicines for that since the age of 9.

Stacy Saitta said...

My daughter Gianna tilted both ways until she was two. We took her to many specialists, had X-rays and an MRI but nothing was found. It was ultimately diagnosed as BPT. She never vomited or anything and would not act any differently when tilting. She is now 6 and has not tilted since she was two with the exception of two times when she went on a spinning ride and came off dizzy and not feeling well. I definitely thing it has something to do with balance/equilibrium.

In Jsnuary this year, she was diagnosed with bilateral sensory neuro hearing loss and now wears hearing aids. I definitely think its all related. We are still in the process of determining whether the loss is stable or going up get worse and what any underlying causes are.

Anonymous said...

We have been back to the doctor and my 10yr old has now been diagnosed with BPV and I have found someone else who's daughter started with the symptoms again when they hit puberty. So it does look like it can come back when the child is older. Just thought I would make people aware.

Susan said...

My son Gabriel is 5 and has/had BPT since 3 months. He has bilateral hearing loss and wears hearing aids. I am aware of at least four other BPT kids (in addition to those mentioned here already) with hearing loss/hearing aids. Most kids with BPT do not have hearing loss, but there are enough who do to indicate it could be part of BPT. There is discussion about this on the BPT face group page. I'm posting this here in case anyone comes looking for info about this.

MaryB said...
This comment has been removed by the author.
Pauline said...

Hi I have just given my niece information on BPT for her little girl. Mine is 25 and along with this has a mild moderate hearing loss. Now in past 5 years jerks on the left side. Comments : none are related. I live in Australia & we will go back on the ask more questions of the medical profession.