Thursday, January 7, 2010

Update 2010 - no more symptoms

As we start the year 2010, we now know what it is like to have a child that is symptom free of her long standing BPT. The past nine months have only experienced a couple of very mild migraine type headaches - nothing like Suzanne used to have during the BPT years. Alleluia!
We now have much fewer missed work days, more time enjoying our family, and less stress coping with all of the ramifications of the BPT episodes. Suzanne continues to be a happy child, excelling at school and other social activities. She is a pre-teen, so we are noticing the hormonal changes and mood swings. The joy of parenthood, right?
We want to encourage you to persevere with physicians and health care people that have never been exposed to BPT. Share what you know, and trust your instincts in seeking treatment for your child. Do not succumb to unnecessary medication once this diagnosis is made. Our experience is that the seizure medications have no measurable effect on the BPT episodes, but have side effect possibilities that could be a negative factor long-term. Seek guidance and understanding from a pediatric neurologist.
We are always available to share our knowledge, and now can be found on a Facebook page, too. With love and understanding, The Rivera Family in South Carolina, USA.

16 comments:

Martin said...

If possible, please post this in English. I apologize for being unable to provide the translation myself.

The Barnett's said...

Glad to hear that she is doing so well. We love and miss you all!!

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Renee and Philip Schreibman said...

My son has BPT and is 10 months old. What medications do you suggest to help with the migraine, headache like pain at onset. I can tell he is in a lot of pain and as he has gotten older the episode length increases. I put a call into the ped neuro dr today to discuss but figured other parents experiences are just as valuable... feel free to email me: reneenay at aol.com Thanks!

Adel said...

So glad your child is symptom free! I just heard about this and am researching it to see if my son has it. However, I did not choose to read through your blog for one simple reason--the blaring misspelling in the heading. As a parent who is very careful to look for accurate information, that turns me off. I'm not trying to be rude, just merely suggesting you change the heading from "Dose my child..." to "Does my child..."
Good luck!

Martin said...

Thank you for noticing. This blog site is free, and I voluntarily created it to give insight and hope. I have no proofreaders or publisher to review the posts. I use spellcheck, but as you can see, this was not the problem.Regarding the misspelling, it can not be corrected because of an IT error complication from Google. I tried again with the same results.
I hope you will review the material presented by parents in the effort to find answers or links to this rare disease. Best of luck to you and your child, "Anonymous". I hope that it is not BPT.
Sincerely, Martin

Kim said...

Hi Martin. My name is Kim Malcolm. I came across your page agfter searching google for Benign Paroxysmal Torticollis. Our ped. neurologist is now headed in that direction regarding a diagnosis for our daughter. She had her 5th series of episodes this past Friday, Sept. 10th. She just turned 4 months old that day. Her very first was about 3-4 days after she was born. Her second was about 7-8 weeks old, and her third and fourth were Aug. 13th and Aug. 6th. We spent 6 days in the hospital trying to catch it on EEG. She has had an MRI with 'normal' results. I've been an EMT since '91 and I must say, even for all the things I've seen, this is seriously scary. I hate that she is seems to be in so much pain with this. Anyway. I would love it if you could forward any more detailed information as it would be helpful in getting the 'official' diagnosis. Thank you so much and I am ssooooo happy to hear that your daughter is finally outgrowing it. Thank you very much for you time. Sincerely,
Kim Malcolm, Lyman SC, kimmie_180@yahoo.com

Kim said...

Martin, I forgot to say that we are currently in the hospital and have been here since her episode on Friday. She has been on EEG and just today and tonight seem as though she may actually be getting ready to go into it again soon, hopefully, so they can see it. Thanks again. Kim

kmlange said...

Martin (and others),
I corresponded with you a couple of years ago when my identical girls were diagnosed with BPT. Thankfully, their episodes have decreased in frequency (knock on wood). They just turned 4 and now seem to have more episodes of vertigo which are fleeting. My question to you is: do you know if hearing loss can be associated with BPT? One of my girls has just been diagnosed with a significant hearing loss with no apparent cause. I'm just trying to put the pieces of the puzzle together.

Thanks again for starting this blog!

Karen
kmlange249@comcast.net

aim2him said...
This comment has been removed by the author.
aim2him said...

My daughter was born in 2001 and immediately showed the head tilt. We had her seen by a Physical Therapist through First Steps for Torticollis and she was treated from about 2months till she was almost 1 1/2 years. We also noticed and had her checked for speech delay. She quit putting more than two words together around the same age. She was enrolled in First Steps Preschool through our State to make sure that kids do not delay developmentally. Around 5 Catherine started having Nocturnal seizures. We saw a Neurologist locally and before the results from the first eeg the doctor wanted to start her on seizure meds. We weren't comfortable with that, so We went to Children's Memorial. They did an overnight eeg which showed slow sleep spindels. ( which one of the nurses said sometime is seen with reading delays ) after several months of nocturnal seizures, we decide with the doctor to put her on zonisamide ( the doctor rx zongran, but we opted for the generic.) she was on it over a year and was seizure free but developed a ( 1 ) UTI, which our pediatrician treated with antibiotics and after the test results decided to send us to a Urologist. After battery of Urology tests were they filled her bladder and took xrays while she emptied it, to check for reflux, they found none. But the Dr felt there was a lot in her intestines that was being retained and we started her on Bactrim And Ducolax ( the Dr Rx Miralax, but Ducolax was the same and over the counter)The results of the urology test showed possible spinabifida occulta and the Urologist wanted to do a MRI. I tried to keep the pediatrician and the Nuerologist on this to make sure all the Drs knew what was going on. The Nuerologist ordered an MRI to be done at the same time to check for Chiari( a lowering of the brain stem ) The test results were no Spina Bifida Occulta and there was a lower of 2mm of the brain, but not considered Chiari. An eeg was done, again no seizure activity so the Nuerologist decided to discontinue the Zonisamide...the seizures started again...since June 2010 they are every two weeks sometimes once a month. I had used a baby monitor was able to get a video camera with night vision and a 100 ft cord for $14.95 at the local big box hardware store, it plugs right into the video recorder and I have caught 3 seizures and was able to rerecord and burn them to a dvd to send to the doctor. I also was able to download them to my Social Network sight so that another Dr could view them. So now we have started Strattera in Novemember for attention problems with school and homework. She sometimes will complain of a headache pre nocturnal seizure or get extrememly crabby.....When she was sick the had three seizures in less than 6 hours all when trying to fall asleep. That has happened twice. Both times illness has been involved. We started Medadate CD with the strattera. They had us giving it to her at the same time in the am. She still had a seizure two weeks apart. So now we are at Medadate ( stimulant in the am ) Strattera ( depressant in the PM ) And they want us to give her 1 mg of melatonin before bed. We are do for a seizure here soon. But the doctor is pretty sure it is Benign Rolandic Epilepsy and she will out grow it. I have also wondered if Cranial Sacral Therapy might benifit her. If the pressure of the fluid around the neck, brain etc....might be effecting her. I was looking online for Torticollis and seizures and found you.....

Kelly said...

Do u know anything about the cacna1a mutation in the brain and the link between this kind of torticollis. My 5 and a half month old daughter has been diagnosed with benign paroxsymal tortocollis and im wanting to learn more about it. Ii have pretty much taught her doctor about it. She believed it was a cause of family history of seizures which no one in my family or my husbands family have a history of. Nothing seems to be helping her episodes and she is in a great deal of pain and can't be calmed down when this is going on. Please help if u can.

Unknown said...

Thank you for creating this site! It has more info then my Drs do, and has helped me understand my sons diagnosis of BPT better. The medical community doesn't seem to know much about it...

chemene said...

I am so not good at this...I am trying to find help and post my story but i cant seem to figure out how. My son is 19 months old and really close to the diagnosis of BPT. I am having so may issues finding a neuro doc in the NY area that has any experience with this. I need help so bad.

yonit said...

Hi Martin: It's nice that your daughter is getting well.
Our daughter has terrible cyclic migrains (she is 15) and nothing seems to help.
When she get medication for the headache she still has spells of dizziness. As a baby when she had the tilts she always vomitted as well, just like she does now when she gets the migrain attacks.
The last time she had only a dizziness attack so maybe things are getting better.

Yonit

Anonymous said...

Martin,

I am very curious as to your wife's take, as an occupational therapist, on BPT. I ask because our five-year-old has definite vestibular and auditory sensory issues that I believe are related to compressed nerves in the neck. As a baby he hated log rolls. We are in the process of beginning an intensive sensory diet for him and I am focusing on all of the things he avoided due to his neck. He presented with a severe tilt to the right (for two weeks), followed by a straight head for two weeks, followed by a severe tilt to the left for two weeks. He did a solid two years of PT and had great mobility, but persisted with the tilting. I am really, really interested in talking with someone about sensory issues related to BPT. Can anyone please help? Can anyone point me to a good scholarly article? Martin, I would really appreciate talking with your wife if she would be up for it. Many thanks. Lucas' Mom