Thursday, April 16, 2009

Collins Story - BPT gone after 2 1/2 years

Our son Collin was born Oct. 03. I had preeclampsia the last part of the pregnancy and had to deliver Collin at 36 weeks. His weight was 6 pounds, 14 ounces. Jaundice was the only complication that he suffered from. We noticed after birth that Collin's body was in a C shape all of the time and did not worry too much about it. He was very colicky and fussy. The first serious symptoms that I noticed were around the 6-8 week marker. One day while breast feeding, Collin's eyes rolled back in his head and his right arm quivered in a bent over the top of his head position. Then, he projectile vomitted and basically passed out. This was the first of many episodes to follow. He suffered the head tilt 2-3 weeks out of every month with the finally of migraine. Then he would be great for a week and the cycle would start over. He also would suffer a bright red looking rash on his cheeks a day before the final migraine would happen.

We talked very closely and frequently with our first pediatrician about everything that we were witnessing. He dismissed all of the symptoms except the constant spit up. He treated him for reflux- which did not work. I was advised to go on a dairy free diet, which I did for 6 weeks, still no change in the symptoms. When I would question this Dr. about the milestones that our child was not meeting, he would say "I'm not so concerned about your child being a little delayed on the milestones." This pediatrician also often would say, "Babies do some pretty strange things." When we would call into the office during the actual migraine part of an episode, we would be told that there was a bad flu bug going around. Every time, I would respond with, " Collin does not have a temperature, so how could he have the flu?" Two other Dr.s at this same practice dismissed all of the symptoms. I was also insulted by the Dr. about the flattening of Collin's head on one side. The physician informed me to turn him more frequently in his crib. I was allready doing that.

On our family picture day, (Collin was 5 1/2 mths old) another episode occured during the photo session. I told my husband that I was not going to stop looking for an answer until I recieved one. I had a constant nagging in my mind that something was wrong with my child. We went straight to the pediatricians office with our sick baby and met the 4th and final Dr. at this practice. She took one look at our child and said, "I don't know what is wrong with your child but something is very wrong and I will help you find the answer." She sent us to a neurologist and together they worked out a battery of tests which were: MRI, EEG and blood work looking for any abnormalities. Everything turned out fine, except for one of the blood tests for organic protein disorders was borderline. They ruled that to be normal. During the time of waiting for all of the results, our brilliant pediatrician discovered through her own research, BPT. She was not sure of the diagnosis and asked the neurologist to help confirm this after all of the other tests were clear.

The torticollis went away at aprox. 21/2 years. The daily headaches and migraines persisted however. Collin also had pretty delayed language skills, so we agreed to try cyproheptadine. Within a week, we had a happy talking child. He still had bouts of the headaches/ migraines occasionally. We saw a pattern developing, Low pressure weather patterns bring on the headaches and sudden severe barometric changes cause the migraines. We stopped giving the cypro medication and started pre-school last year. We had alot of behavior issues to deal with at school. As a result, we started Collin on a new medication named amitriptiline. I'm not sure how effective this medication is but it helps him sleep better at night. Severe vertigo also triggers Collin's migrains now along with the change in Barometric pressure. He suffered a migraine this last weekend from riding his battery powerd truck. There was no vomitting, but he lost the ability to walk on his own, my husband put him straight to bed and Collin slept for several hours.

I worry about our childs future in dealing with this condition. I hope that through this web sight that we can all help keep each other up to date on any late breaking medical news. I am also not convinced that this is a genetic condition. I suffer from occaisonal headaches and a pretty good case of motion sickness. But is that really the tag for my child having such a bizarre illness?

Thank You for reading our story. Best of luck to all of your families.

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