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Benign paroxysmal torticollis of infancy
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Benign paroxysmal torticollis of infancy

My 14 month old son has been having episodes of head tilting since about 2 or 3 months old.  He will tilt his head mainly to the left side for day and then the next day it is gone.  His doctor had sent him to a ENT doctor and eye doctor and they say everything is fine.  She has checked his neck muscles and says that he dosn't have torticollis but I am wondering if she has ever heard of Benign paroxysmal torticollis. She at first wanted him to see a neurologist for a sacral dimple that has a hair growing out of it but then changed her mind about it.  Maybe it is the sacral dimple that makes it look this way and this may sound strange but it looks like his butt is crooked. He can walk and has been walking since he was 11 months old but he falls alot but that could be due to that he is only 14 months old.  He also at 3 months old had times where he would throw his arms out to the side and it looked like he had the wind knocked out of him he would have a blank stare do that for a few seconds and then let out a scream and then do it all over agian. Everything else about him seems normal he is healthy and happy. I guess my question is that could he have Benign paroxysmal torticollis and should he see a neurologist if his head tilts don't get better.
Thanks
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Avatar_n_tn
Dear Crystalian - My daughter is only 4 1/2 months old and has been diagonosed with Benign Paroxysmal Torticollis.  Her pediatriian was not the one to diagnose her.  I was insistent on having her see some specialists after noticing at only a month old that her head was tilted to one side and she was stiff.  She goes for days or approx. a week with her head tilted to one side, then she'll wake up with her head straight and it'll stay like that for anywhere from a few days to nearly 2 weeks and then her head will tilt ot the other side.  (it switches from side to side)  She was diagnosed by a chiropractor that specializes in pediatrics, as well as physical therapists at the nearby children's hospital.  Although my daughter seems to be developing normally and her pediatrian is not concerned, I plan also to take her to a neurologist to find out more.  
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707385_tn?1228929047
My son was finally diagnosed with benign paroxysmal torticollis of infancy. He also had recurrent episodes of head tilting from side to side. I did my own research online and discovered BPT quite by accident. When I mentioned it originally, none of the doctors had ever heard of it. But it is the only thing that fits. We just had a final MRI to rule out anything more serious. What you describe sounds similar to our experience as well.
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620923_tn?1405964489
Hi...not to throw fuel on the fire, but has ur child been checked for tethered cord?
U mentioned the dimple and to me it was a flagg!

If u have not had MRI's done I suggest u do like seansmommy and rule some other conditions out.

Good luck to u all!!

Godspeed
"selma"
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Avatar_n_tn
My daughter, now 14, presented with symptoms identical to your child.
After months of exams at the National Children's Medical Center In DC, neurologists, EEG"S, MRI's, therapy, a coworker of mine, a pediatric physiatrist presented me with a possible diagnoses after my reports to her.  I conveyed the diagnoses to my daughters MD's who seemed happy to accept it.
Her symptoms decreased in frequency and subsided by age 3.  By that time she had fallen several times and received stitches.  At approx age 8-9 she began having severe headaches ibuprophen and Imetrex helped little, now, these too have decreased in frequency and she is better able to tolerate them when they do occur.
Good Luck,
Monica
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707385_tn?1228929047
FYI-To all surfers who are looking for parents with kids of this disorder, there is now a group started on FaceBook= benign paroxysmal torticollis- and I also found a yahoo group called bpvkids.

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Avatar_n_tn
My five month old daugher has been diagnosed with BPT.  I am doing research to find out more information because I am the type of person that needs to know WHY???  

I took an anti-nausea medication throughout my pregnancy.  Did any of the other moms with children with BPT take any medications during pregnancy?  
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Avatar_dr_m_tn
Hi,
The symptoms that you have mentioned do suggest of Benign Paroxysmal Torticollis . The characteristic features of this condition are- head tilt, infantile seizures, still eyes, loss of balance, vertigo, vomiting etc. You have mentioned that your son would throw his arms on the side and would stare blankly for some seconds when he was 3 months old. Those were infantile seizures. As he has other symptoms of head tilt, loss of balance as well, you must seek medical attention. Please consult a neurologist for the management. Hope this helps you. Take care and regards!
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Avatar_n_tn
is it curable perfectly? how much maximum time it may take to be cured? is there any possibillity of any mental problem
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Avatar_n_tn
is it curable perfectly? how much maximum time it may take to be cured? is there any possibillity of any mental problem
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Avatar_f_tn
My 15 month old daughter has been recently diagnosed with BPTI and my wife and I are still kinda grappling with the diagnosis. I have written an article over at my blog talking about the diagnosis and what we're hoping to do to help our daughter. In an effort to try and simplify the diagnosis when talking to people - we have redubbed BPTI as The Tortoise Collar - a monniker that our four year old son came up with.

Please visit http://www.deanfromaustralia.com/2011/02/discovering-tortoise-collar.html to read of our experience.
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Avatar_f_tn
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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Avatar_f_tn
My daughter started having these episodes when she was less than one month old.  She would tilt her head (not always to the same side) and then throw up, the head tilting would last a few days and then she would be fine.  Sometimes it would be a few days or a few weeks before she would have another episode.  At one month old she was admitted to the hospital for the weekend, they did a brain CT to rule out seizures and that came back normal, next they did an upper GI series and those came back to show that she had reflux.  She was put on reflux medications and it helped with the spitting up but there would still be periods of time when she had the head tilting episodes.  At that point her pediatrician and the ER docs all just scratched their heads and said "I don't know"  She is now 11 months old and it has been several months since she has had an episode.  Well she woke up this morning with her head tilting severely to the left side, so much so she could not even sit up on her own.  Today the pediatrician called a neurologist and that is how I learned about BPT.  To answer your question about the tubes, my daughter had been on antibiotics about 7 or 8 times for ear infections and had tubes put in her ears on April 12th, so that did not seem to stop the episodes from happening since she had one today.  On another note, the episodes seem to happen only when she's had dairy or if I have a lot of dairy (she's still breastfed) she is going to have RAST testing next month for that issue.
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Avatar_f_tn
I would like to thank you all for your posts by daughter is 14 mos old and we have been battling these same "spells", as we have called them, We have been at children't 4x in Omaha NE and I haven't received any answers other than they are migraines and they put her on topomax (topamax) at 8 mos and she is still on it. Every time she has a spell they tell me to up her dose and lately she has been having more and I don't think the medician is working. This is unbelievable and I am calling my pediatrician, family practicianer and neurologist today.
Thanks a bunch,
Stressed Mom from Nebraska
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Avatar_f_tn
oh my gosh. you are the first person i have seen on these posts that has a child that does what mine does. goes to both sides and there is no pattern.  i went to a neurologist last week and she said everything was fine and maybe she would outgrow it.  i hope she is right.  it is so frustrating to wake up everyday wondering which way my little girl will be. i am also worried about the long term effect as she gets older...will she still have this and get teased, etc.  they told me they don't think she needs surgery.  i get physical therapy once a week since she was 4 months old and i do the excersises. her vision was checked by a professional who does this only and it was fine.  so i am at a lost cause...do i keep doing what i am doing or see someone else?  i think my options are getting slim.  she is very healthy and meeting all milestones in growth.
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Avatar_f_tn
My daughter is now 19 months and is doing better, she also had issues with head tilting to both sides with different episodes ever since she was about a week old.  Before I really knew that she had BPT I had started taking her to a chiropractor for a few visits because of her ear infections and I honestly think that has been what helped more than anything.  She didn't have an episode for about 6 months after she had her last visit.  I have unfortunately noticed that she's been tilting her head to one side for the last week or two, I plan on taking her back to the chiropractor in hopes that it will help this time too.  I do think sometimes she gets headaches as well, she'll grab at her head and kind of whine a little, Tylenol seems to help with that so far.  But overall as she's gotten older her symptoms have improved dramatically.
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