My son has just been diagnosed with Benign Paroxysmal Torticollis. He is 7 1/2 months old and when he has an episode, it is just heartbreaking. His head tilts until his ear is almost touching his shoulder. His body curves until he is scrunched up like a bannana. He cries as if in severe pain. The worst part is that when the spell hit he is just soout of it. It's like my little baby is "gone". He doesn't respond to his name, shows no interest in any external stimiulation. He just closes his eyes and whimpers. Then the gagging and vomiting begin. If he has anything at all in his stomach it comes up. Over and over again. During his last episode he vomited 6 times in 1 1/2 hours. Then he sleeps deeply for several hours. When he finally wakes up he's all better. Head tilt is gone, he's hungry and able to keep food down. He's usually in a good mood and such a smiley baby. From start to finish these spells last any where from 8 to 24 hours.
My question is, if there are any other parents (or even doctors) who have found any treatments that have helped their children during these episodes. I hate feeling so helpless. I hate seeing him in pain. There has to be something I can DO.
I wish I had answers, I just wanted to write to say that I can relate and I too have no idea what to do for my 5 month old son. Doctors are just uneducated about this and although my son hasn't been formally diagnosed as having BPT, I am pretty sure this is what we are experiencing. Our severity is less than your son's, but the duration is much longer. We see recurrent head tilt about every 7-10 days for about 6-8 days at a time. It switches sides and we see excessive spit up after feedings, we sometimes get the full body tilt, but not for long periods of time, he seems to be less interested in play and is sort of floppy at times. When he is "straight", none of this exists. His episodes happen with predictable regularity. BPT is really the only thing that DOES fit. He has full range of motion and has since we did two sessions of physical therapy. He seemed to "resolve" so quickly and we thought we were on the road to recovery, but now he stumps everyone. We had x-rays done and had him seen by an eye doctor twice and a neurologist, but have not had it in us to put him under for an MRI. Everyone keeps telling us that he looks great, he's developing ahead of his age (except that he doesn't roll yet) and that he will grow out of it. No one can truly explain why the tilt reappears after appearing to be gone....I just give up discussing this with local doctors. I think it's too rare for the average doctor to discuss and with so few cases out there, how would a doctor possibly specialize in this? I just wish we could have some real direction. I don't feel like I have a doctor on my side, so I know how you feel!
I can relate to you also..my daughter started all this at two months old. she in now 15 months old. i've been in and out of doctors and hospitals no one around here knew what was going on until i found a neurologist out of state and she said my daughter has benign paroxysmal torticollis..i've been searching for months now for a treatment. still nothing. it is very hearbreaking to watch and i cry every time she has an episode. I wish i could take her pain away and make her the happy little girl she was the day before she had an attack. just yesterday she woke up with a heavy head tilt to the right. i gave her some motrin and laid her down she slept for five hours and woke up vomiting hard the rest of the day. she could not walk due to being dizzy and fell hit her head a few times. the next morning she was fine no head tilt. still having a little bit of a balance problem but playing and being happy again.. this makes the third attack in less then a month. I wish the doctors knew something more about this disease so they can better help us mommys! god bless you and your baby!
I too know exactly what you are going through. My son, now 3, started having his spells at 4 weeks old. We saw many doctors and hospitals and had all the tests done, which all came back normal.He had headtilting, vomiting, eyes rolling, and stiff body. He was first diagnosed with acid reflux, then Sandifers Syndrome, and then migraines. Now 3 years later he still has one spell a month almost the same day every month, I mark my calendar. I decided to do research on my own and found info on BPT. Now there is no doubt in my mind this is what he has. I had my second son two months ago and he already has head and body tilting spells. It's going to be a long road but now I atleast know what it is and we're not alone.Thanks , Abby McCollum
I just wanted tocheck back here incase anyone comes up with this board in a search. There's a group on facebook now called benign paroxysmal torticollis. Lots of good information there, lots of other parents of kids going through this. Some have found treatments that work to lessen the severity and frequency of attacks. In our case Sean just out grew it around 15 months of age.
Hey everyone. My daughter started the head tilting at 10 months old. We spent a year and a half in and out of Children's Hospital in Dallas continually testing for epilepsy and nothing showed up on any of the EEG's...not even on the overnight video EEGs. They began treating her for epilepsy at 11 months old using Phenobarbitol (the worst drug on the planet, IMO) - it did ward off the attacks, but also curbed her eating horribly, made her scared of absolutely everything and anti-social, and her once 10 word vocabulary at 10 months old (which was advanced for her age) was a mere 4 word vocabulary at 2 years old. I was beyond frustrated and started looking for answers elsewhere. I went to an ENT who I found out used to work for Children's and quit because kids are treated as numbers there and tend to get lost in the system - just too many kids. He referred me to another neurologist. In the meantime, I started researching online and found info on BNT. My daughter was also diagnosed with acid reflux at 8 weeks old... and with that and the other symptoms of BNT, I was convinced this was the answer we had been looking for. I brought my thoughts to the new neurologist, Dr. Gerald So (out of Plano, TX) and he felt it was definitely probable as he has another patient he's been treating for 15 years with the same condition. He took her completely off of the phenobarbitol and then put her back in the hospital for 3 days for another video EEG - saw the events clear as day, but no reading on the EEG. He then agreed with me that we were dealing with BNT and started her on a low dose of Trileptal (a godsend of a drug - no real side effects that we've been able to see at all). Within 2 weeks, my daughter was talking up a storm - even counting to 10 in English and Spanish. Turns out, the other meds put her in a fog...and she was absorbing information like crazy, just couldn't verbalize it because of the meds. She's been on the Trileptal for a year and a half now and is doing great. We don't even really see events anymore. They're going to try to wean her off of the Trileptal in the summer and see if she is still having events or if she's grown out of it. Either way, I'm just so thankful that we have something that works. I wish I had found this forum earlier - it would have been wonderful during that so difficult time to know that we weren't alone. I hope this helps.... One other thing... we have had a bout of 8 double ear infections in the past year - she's also allergic to penicillin, so treatment has been tough... she's scheduled to get tubes put in her ears in 2 weeks for the chronic infections and fluid buildup as her hearing is suffering due to that. Has anyone with a child with BNT ever had tubes put in their ears and how have they done health-wise since?
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