Wednesday, February 20, 2008

Siblings with BPT

What follows is Karen's contact with me regarding her twin daughters and our e-mails. She has agreed to let me post them. Oh, and as Suzanne got older, she did not continously have the head tilt, as in the pictures.

Hi Martin,
Thank you so much for your reply. Absolutely you can post my email and my email address. I would love to network with other families!
Our twins (which are actually triplets - they have a brother who has never had symptoms of BPT) are 16 months old. Our Olivia has it much worse than Cassie. She tends to get it about every month and a half to two months, though she has gone 3.5 months without having them. Cassie has only had 4 so far. Thankfully, they have never had one on the same day. But 3/4 times they had them within 1 week of each other. During these episodes they have to be held all day by one of us because, as you know, they continues to wretch all day and I am afraid of them choking in their cribs. Thankfully, my parents live nearby and come to help if we need them. I have not noticed moodiness before the episodes but I've noticed Olivia is much more emotional for a few days afterward.
When your daughter was a baby did she have a head tilt most of the time? Mine do, but Olivia's does get worse when she is going to have an episode. We did see a pediatric neurologist. I think he ruled out BPT because their head tilt is present more than when they are just going to have an episode.
When did your daughter develope GERD? Mine had it at birth but do not have it any longer. Do you know of any other children who are over 5 or 6 who still have it?
It sounds like you have not found any factors which bring these on, such as change in barometric pressure, stress, etc. I have not at this point.
I am going to try to get these articles. Unfortunately, I do not live near a medical library.
By the way, your daughter is absolutely beautiful!!!

-------------- Original message --------------
From: "Martin Rivera"
Hi Karen,

Sorry it took so long to reply. It appears you may be dealing with BPT…please follow up with a pediatric neurologist if you can. I would also suggest getting some of the medical articles.
How old are your twins now?
Regarding therapy, nothing I have uncovered will resolve the symptoms of the torticollis. The medical literature says it resolves or disappears on its own ‘mysteriously”. My daughter still gets the migraines, vomiting and moodiness regularly every 12 weeks. I have posted suggestions on treating the symptoms, like a cold washcloth on the forehead. She takes Prevacid for the reflux, and Tums when her tummy hurts. Physical therapy was not an option because she complained of pain when trying to straighten her neck during the episodes. As she got older, the torticollis became much less pronounced during the episodes, and not there in between the episodes. We did not try holistic treatments. Suzanne was born within normal delivery times.
My wife, Nancy, and I would like to know more about your daughters and how you are doing with the day to day challenges of having twin BPT children. It must be very hard. Do they both get the episodes at the same time, or are they spread out? My daughter had projectile vomiting for a long time, so we had to have full size towels around when we knew it was time for the BPT. Sleep was always welcome for her and us. The migraine meds she took for awhile helped her get sleepy. She only takes Motrin now, but we have the strong stuff as backup. We are very cautious on using more medicine than needed on our children, since much of it has been studied minimally in pediatrics, especially for the long term use.
Would it be ok with you if I posted your e-mail on the Blog? Just knowing there are other parents out there dealing with the same or similar situation is very helpful to those that finally are getting some kind of answers on what their children have. I can keep it anonymous if you like. Please let me know. Every bit helps. Nancy and I fell that many more children have BPT, even though still in the rare category, but the medical community has very little experience with BPT and very few original, well designed medical studies to reference.

Martin A. Rivera

From: []
Sent: Monday, February 18, 2008 3:37 PM
Hi Martin,
My name is Karen and I discovered your blog this weekend. I think my identical twin daughters have BPT, one worse than the other. They have had torticollis which changes sides since they were about 3-4 months old. Once every month or two they have episodes in which their headtilt becomes worse and they appear to have a migraine (squint and push on eyes, vomit and wretch for hours, become very lethargic and sleepy). The head tilt gets better afterward but does not always go away. The episodes seem to be getting longer - last 1-2 days. They have never had seizure-like symptoms.
What do you think? Do you think this sounds like BPT? They were diagnosed with migraines but it just didn't seem to fit because of the torticollis.
If you don't mind I have a few questions:
1. Did you find any kind of treatment that helped? Did you try any holistic treatments? We have tried some osteopathic manipulations but I don't know if they are helping.
2. My daughter was born 2 months prematurely and had reflux (was on zantac, reglan, and prevacid). Does your daughter share any of these?
Thank you so much for your blog and for your help! I finally feel like this fits better than just migraines. By the way I am also an occupational therapist :)

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