Thursday, January 17, 2008

Emotional Stresses of loving a child with BPT

We aren't really sure exactly when we noticed Suzanne was holding her head on her shoulder (tilting), but pictures we recently dug out show that it was probably from birth. The Doctor had to use forceps to deliver her, and I always wonder if that was part of the cause. We will never know.

My wife probably knows better, but she started throwing up, crying, and getting really fussy during the first few months of being born. [She still gets irritable a few days before the next episode is about to start, kind of like a warning.] Then she had the seizure like episode that sent us rushing to the pediatrician. Again, he told us all kids get those, and that to expect it when she had fevers. Being our first child, it scared the hell out of us! Something wasn't right.
It took us a year of heartbreak, worry, grief, crying, frustration, anger at God (by me) for letting a little, innocent child suffer so, and many more emotions before we successfully uncovered BPT.

A note about our wonderful pediatric neurologist. He showed a great amount of interest early on, even sharing that he wanted to share the pictures, videos, and case of our daughter at a conference in Barcelona, Spain. He never did. Disappointing because we thought this might get us more information on what approaches we could take. Then, as she got older, and different medications were tried with little or no success, his interest waned. We learned how to manage her "episodes" with little outside medical help, and she hasn't seen him for years. We are going to make an appointment to update him and keep BPT awareness in his practice current with Suzanne. He did prescribe Migraine meds that helped for a period of time, but we found as she could communicate better that the safer Motrin was giving her just as much relief.

My wife's' employer has been very, very understanding and gave her the Family Medical Leave Act coverage on an as needed basis for 2-14 days at a time. Although this is unpaid leave, it protects her position at work. Also, we had some help from family.

How we work it is that I am able to take a half day off during the worst parts, usually the first 24 to 72 hours, then my wife would come home around lunch time so I could go to work. Sometimes we had to take personal days or vacation time, because your child being sick does not permit you to take sick leave. Sometimes we were so tired or mentally worn out that either one of us called in sick for a day or two. We have been doing this for almost ten years; although, the last couple of years Suzanne's episodes are of shorter duration and intensity. We understand that the BPT resolves itself spontaneously within two to twelve years - we must be on the 12 year track.

She now gets migraines or headaches with the eyes slightly rolling back into her head, vomits, and sleeps. We discovered early on that a cool, wet washcloth on her forehead across her eyes really, really gave her comfort and helped her sleep. This was a time my wife and I could rest some, because after each episode, sleep seemed to give her a break before another one came up, usually between 30 minutes to several hours later. I don't think she ever threw up while asleep. We learned to always keep a container or bucket or trash can nearby for her to throw up because there was no time for her to get to the bathroom. Also, she usually did not want to eat anything or drink anything until the episode was all over. If she did manage to eat some saltines or drink some clear liquid, she would immediately throw it up until she was dry heaving. Nothing could have been left in her little stomach. Obviously, this was a cause of great distress for us and a feeling of hopelessness. Also, we were concerned of the acid reflux going through her throat so much. The Prevacid or Nexium really helps. Let me assure you that nothing can replace the comfort of being there with her and for her. She sometimes asks why this is happening to her and no one else, but she has learned how to cope and accept what she has. The best we gave her is that we will always be there for her, no matter what.

At times my wife and I felt we were near the end of our wits, but watching how a tiny little person could deal with something like this and be totally happy when it was over, usually with a huge appetite from not having anything to eat, let us know that we could do better. Hopefully, she never saw us cry or be sad because we kept those emotions behind closed doors. We wanted her to be positive and have hope even when we had doubts or frustrations. Oh, it is also so very important to be supportive of your spouse during these times. Everyone can be at their weakest points at separate times or even at the same time, but recognize this and realize that it is the situation, and not the person that is making it hard. Those times always pass, so don't accuse or blame anyone, even yourself, for the BPT. So be there for each other, too.

A couple of other items to be posted later: we did have another child, after much discussion and research on the possibility if this runs in families -he does not have BPT; she developed hearing loss around 2-3 years(mentioned in the articles), then diabetes around six years (also mentioned); she also wears glasses 'sometimes' and this helped with some of the minor headaches. It looks like most kids just have the BPT. You can imagine how much energy, time, and money this has taken. Despite all of this, she is very smart, popular in school, knows that her medical situation does not limit her to do or be anything she wants and has, what I think, is a very positive outlook on life.

We welcome all comments or questions on this site. Thanks for visiting.


The Barnett's said...

Wow! Even though I've heard the story before this still brought tears to my eyes. Maybe it's because I know you all and I know what an amazing little girl Suzanne is. Or maybe it's because of everything we went thru this summer with Jackson. Either way, you are both so strong and such amazing parents. You've done a wonderful job with both her and Christopher. We love and miss you all. And Thank you for all you've done for our family. You were always my support when I needed it most. Thanks! You're doing a wonderful job with this blog and I look forward to reading more posts.

Anonymous said...

My son is now 26 months old and was diagnosis with torticollis/plagiocephly when he was 2 weeks old. He received Physical therapy for 6 months and symptoms resolved. At 18 months he woke up one morning and had his first eppisode of vertigo, dizziness, light sensitivity, could not walk steady, falling over, head tilt, pale... He took an afternoon nap and symptoms were gone. Since then he has the same espisodes randomly about every 2 months. He has had all the tests completed and everything comes back normal (mri, ent, neurologist, opthomologist, hearing test, blood work...) He has some of the symptoms BPT describes but not the more severe symptoms (i.e. vomiting, muscle spasms....) Does my son possilby have a form of BPT? We are searching for an answer to this bizarre behavior but like others have experienced keep getting pushed aside. Any insight would be greatly appreciated. Thank you!

Martin said...

Dear anonymous,
In our experience, research, and communications we have found that the children have various forms of the symptoms, but all are characterized with the head tilt - one-sided or both - and one or more of the other symptoms. BPT is so rare that a pediatric neurologist usually has to search the literature for answers, but once they get the FEW cases published, a diagnoses can be made with more certainty. It is my opinion that your little one has BPT because of the head tilt, dizziness, etc. and that you have taken all the tests to rule out other causes. Yes, it is a bizarre 'disease' but seems to be of little consequence in the long term.
If you wish, you can e-mail me at to continue our discussion, or continue to post it here. My wife and I will try to give any support and insight that we can. We know how strenous it can be to care for a BPT child, no matter what the symptoms. At least your child is old enough to communicate what is ailing. Sleep seems to be a common trait in dealing with the symptoms by the kids. Take care.

NITZA said...

There is some Doctors in Cuba, they did some studies on kids with BPT, Names : Dr. Albia J. Pozo Alonzo, Dr. Desiderio Pozo Lauzan and Dr. Desi Pozo Alonzo. You may found some answer there.

Anonymous said...

I found the BPT home site (which seems to be unavailable at the moment) months ago when I stopped researching horrible diseases for my son and decided to research his symptoms instead. The BPT home site immediately came up in my search and as I read the stories I cried, called my husband and said, "I know what's wrong with Logan". Thank you for posting your journey and helping others like myself who have a "tilty" child. My son is 10 months old and was offically diagnosed with BPT yesterday. I took the neurologist copies of the stories and information posted on the BPT home site and before I got a chance to show our neuro the paperwork he said he was confident our child had something called Benign...and then I finished his sentence for him. So, after almost a year of countless tests, worry, fatigue and lots of vomit we are on our way to recovery. Logan has been in physical therapy since he was 3 months old and is doing wonderfully. We haven't had a bad episode since September, just tilty days/weeks so I'm hoping things coninue to improve. Thank you again for sharing your story and know that you helped this very worried mom find some peace. I hope your family is doing well!