Thursday, April 16, 2009

A Request to BPT Families

My request is that you continue to keep us up to date on how you are doing with the progression of the BPT. I have still not heard back from anyone saying their child has "outgrown" the BPT or that they had a child with BPT but didn't know what it was until it was over. We would love to post this kind of story to give hope to those kids still struggling with BPT.

My e-mail is for those of you wanting to be anonymous or just wanting direct contact. I have an international calling plan and would be glad to talk live to anyone that is interested. Unfortunately, I only speak English and Spanish for those people in India and Europe that have contacted me.

We have heard from about 20 families with a child or children with head tilting and other symptoms of BPT. Our daughter, now 11 years old, experienced BPT for about 10 and a half years. She now only experiences the migraine/headaches, so we are comfortable saying her BPT is "cured". I still recall very clearly the agonizing and soul wrenching pain her mom and I felt not knowing what was "wrong" with our little girl. Thank goodness that is all behind us now, and that our son does not have this.

If this is your first time visiting our blog on BPT, please leave a comment or send an e-mail. We love to hear from everyone.


kelly kohlhepp said...

Hello Everyone. My 15 year old son Nicholas had BPT for the 1st 2 1/2 years of his life. He has been completely symptom free since. The only aftershock has been some emotional/anxiety issues. He was diagnosed with severe attachment anxiety and attended a preschool special education program to deal with that and has since been free of that extreme anxiety. Health wise, he is great! He does not have any headache issues, vision, or hearing problems. One symptom he did exhibit from early on were chronic ear/sinus infections which I haven't really seen anyone else post.
He always tilted to one side, right, and did this from birth. At first the pediatrician said it was a torticolus and if it didn't straighten out on it's own by the time he was 9 mos., we would look into PT. It appeared at times that he did straighten out and by the time he was 10 mos. he hadn't tipped for quite a while so we let it go. When he went for his 12 mos. checkup, I mentioned that the tip went away but it was back again and asked if we should start the PT. She was mildly alarmed and said that if it went away and came back that we now needed to see a neurologist. We made an appt. and it was 3 months away. I was concerned but my pediatrician was a very reassuring woman, and had always been supportive of our children. Nick is my second, his brother did not have BPT. Nicholas had many "high maintenance issues when he was young" but he reached all his milestones and we just perservered. He had thrush (which I don't believe had anything to do with this but you never no)when we came home from the hospital, which did not go away(with constant meds, sterlilizing, bleaching, switching toys, etc.)for the 1st 6 months. He had formula trouble and eventually after 2 months, switched to lactofree. He spit up from birth to 12 months at least 20-30 times a day, although it did taper down as he started sitting up and eventually standing. He did not seemed bothered by this and the doctor said that he was gaining weight, she told me to give him mylanta every four hours to help cut down on the acid. So in addition to sterlizing/rotating pacifiers and bleach/water cleaning/rotating toys, I also had to change the babies clothing, my clothing (he usually missed the burp cloth), the burb clothes, clean the couch/chair, and when he started to crawl, the floor. I have to say that allthough he required alot of physical work, he was a generally happy baby. He did however have "fits", not seizure like, but almost temper tantrum type like, scream, get red, stiffen up; and the older he got the worse they got. When were about a week away from his appt with the neurologist, my husband had taken him for a walk in his stroller on Mother's Day. He had carried him back into the house and went to stand him up and he collapsed onto to his right side. He could not get back up and it appeared that his right side was paralyzed. We immediatly took him to the ER. By the time we had gotten there and saw an actual dr., he had regained control of his right side and his head had straightened up.
His tipping would come and go in cycles. We never put any of his other symptoms together with the tip. We didn't realize that the temper tantrums were probably migraines or pain related. He would gradually begin to tip and it would get progressively worse for up to two weeks or so and by that time his head would almost be on his shoulder. He didn't seem grumpy or sick at that time and we hadn't been able to see a pattern although sometimes he would be straight after a nap or sometimes he would just wake up in the morning and be straight again. I remember after he started walking, watching him walk away from me and praying that it didn't look like it was starting to tip again but it kept coming back and within a few days it would be obvious to everyone he was tipping again and my heart would sink. I just wished it would go away.We tried to keep a good sense of humor through it all and had nicknamed him tippy at and he would laugh when we called him that. So when we were at the hospital (he was admitted for observation) he was seen by supposedly one of the best neurologist in our area. They ran a catscan, did an eeg, and blood work, all of which came out normal. He recommended that we get an MRI done, but because he had one of his endless ear infections at that time, he told us to wait for it to clear up and then schedule. He said that neurologically he was fine and confirmed that all his milestones had been met. We canceled our appt. with the other neurologist(the other was a pediatric, but we felt that this was a highly esteemed dr. and that for now would stay with him)So time went on and we waited for the ear infection to clear up, but every time he would get a clean bill of health and we scheduled, he would be sick again and we would have to cancel and reschedule. During the 9 mos. that it took to finally get the MRI done, his "tantrums" were getting worse. It was getting hard to tell if he was emotionally in pain or in physical pain and now that we were aware that something could be wrong with him neurologically we were constantly on edge and constantly picked him up and were calming him down. Our families and friends were afraid to watch him because of the unknown problem and with all these concerns and reactions, I believe, and this was confirmed by experts,that his seperation anxiety grew. When the MRI was finally done and came back normal, our pediatrician suggested that we make another appt with the pediatric neurologist for a second opinion. We did and only saw him one wonderful visit. When we went in for the consultation, Nicholas was tipping that day, and the dr. had all the prior test results. He started to ask me a series of questions that finally put all the pieces of Nicholas' puzzle together. He asked if he had "fits"; if he had ever fallen asleep after one of those fits and seemed like a different kid when he woke up. He also asked about frequent spitting up/vomitting. He also asked if the the episodes of the tipping were getting further apart. He gave me a name BPT and explained "of infancy". He assured me that Nicholas would be fine and that he would eventually outgrow this condition. He explained to me that the thinking at the time was that the sinus cavities in the top of the head would get inflamed and that caused the vertigo which caused him to adjust to the world as he was seeing it and to keep his balance and equilibrium, and that when the swelling had reached it's peak it would all end in a migraine like headache, hence the fits and then a deep nap or sleep and he would wake up like nothing happened. It all made sense. I just had a thought though, I am not sure if it was just my child, but when he was under stress, he sometimes would get those fits and he would usually cry himself to sleep and wake up and be fine in the same situation that we thought had caused him to react. I can't remember if the head tip was even entered into those equations because we just weren't associating it at the time with it. Anyway I am happy to say that he is doing very well. I hope this might help someone else. I remember asking a wise friend of mine why did we have to go throught this and she said that she didn't know but if nothing else maybe I could help someone else that was going through it sometime down the road.(At the time the ped. neuro. said that he had never seen another case in his 30+ yrs of practice and had only heard of two others and I am from the NY metro area)

Martin said...

Thank you very much for sharing your experience. You will be helping because it seems like their is variation among the common attributes of BPT. This is a rare disease not thoroughly investigated long-term, so every new piece of information is very helpful.
Please keep in touch. Martin

Amanda Sansone said...

We just found out my daughter has BPT after almost a year of trying to figure out why her head would get "stuck" to one side or the other, and then eventually realizing she was "out of it" or "gone" or having a "seizure". She is 14 months now and after having what we thougth was a seizure yesterday while in my arms, we rushed to the hospital and they finally were able to see her head tilt, her vomiting, and her being out of it. After a call to a neurologist (again- she's also had MRI- normal, and EEG- normal), the neurologist knew of BPT! Thank goodness we have an answer of what is happening. And thank you for this website because there is little information out there on BPT. We meet with the neurologist Wednesday (2 days from now) and we should learn more and figure out where to go from here. Thanks
Amanda - O'fallon, MO

Anonymous said...

Hi my child is currently suffering with BPTI I wanted to know if anyone's child with Bpti hos out grown?

My baby girl is 7 months and iv been noticing these head turns to either sides with eyes flicking the same way since she was a month old , wherever it use to happen iv tried to put her to sleep and when she would wake up would be completly fine!
I kept on mentioning this to my health visitor and doctors. They said she's very little yet and will grow out of whatever it is she's comepletly fine. Then I started recording her even and one day it lasted all day which obiously was heart breaking seeing her as she wasn't happy and was very stiff and her eyes would scare me the most! I took her to the doctors and he said she's squinting , he refered her to the hospital after 6 weeks we went to see the ped at the hospital and she had an even right there so the ped went and grabbed afew neurologists they saw her and all her videos and first sent us to have the CT SCAN which came out clear and then they confirmed she has BPTI. Also told us she's too young for any medication so the suggestion was not to start her off with any and we agreed as what we have told them and they seen, my baby has a mild case of BPTI thankfully! And we were told she will grow out of it! And I absolutly cnt wait for that day! Even she has a mild case to me it's heart breaking every time she has it and is so horrible and I feel helpless that I can't help her!

Please .... If you could share your child's outgrown BPTI story, I think it would give courage to me and so many other mums who are probably suffering the same situation as me. God bless everyone's children