My name is Patti. I now live in Upstate New York. I have 2 children, Mathias (9) and Amelia (6). I am a single parent now, having divorced almost 4 years ago. We were living in Connecticut until last November when we moved to the Boston, Mass area. In May we moved up here.
Mathias is a very special child. I think all children are special, don't get me wrong. But there are things about Mathias that no one understands yet. At least not me, or the field of medicine.
Mathias was born full-term, regular delivery. He started having problems a few days after birth, and was found to have an Intraventricular (brain) Hemmorhage. The bleed resolved on its own. Developmental delays were noticed at about 3 months of age. He started having Infantile Spasms (seizures) at 5 months. They were brought under control with injections and oral meds. He was diagnosed with Cerebral Palsy at 18 months of age. In June of his 3rd year, he had a Febrile Seizure. It was a very bad one. The local hospital had to LifeFlight him to the University of Massachusetts Medical Center. He was out cold for 3 days, and on a respirator. I think they almost had to kill him to stop it. He seemed to be a bit more tired when he came home, but resumed normal activity. (His speech was almost non-existant, just a few words that only family could understand. That was the Cerebral Palsy, not the seizure). In July, he got sick again, and went into the hospital. The doctors thought he must have a stomach flu, or something, because he was vomiting and dehydrated. He lost quite a bit of weight, too. He was in the local hospital for 8 days. He perked up, but was still looking pretty bad.
They pulled the IV and sent us home the same day. The next day he was urinating like crazy! We thought they had just pumped him full of fluid, and he was finally getting rid of it. But then he had another seizure, and it was back up to the hospital. This time they checked his blood glucose and it was a whopping 847! Another LifeFlight, but this time to UConn Health Center in Farmington, Ct. He spent 2 weeks there, in and out of Intensive Care, getting the seizures and Diabetes under control. The cause of this seizure had been a blood clot in his brain. A stroke. While in the hospital, he also developed a blood clot in his left groin area. I believed the clots to be caused by the high blood sugars (who knows how long it had been building? We think since the month before) and dehydration. All the blood work done there showed no disorder that would have caused the clots. I was scared, overwhelmed, and ANGRY! And the mother of a 6 month old girl. Talk about GUILT in deciding how to divide the time between the children!
We made it through that one. We've had more hospitalizations due to the diabetes, (but mostly with vomiting and low sugars) and for seizures. They feel he is a very fragile child and don't want to take chances with home care.
This past spring, however, he developed another blood clot in the left groin, down to his knee. I think it's time for me to let go of the anger of the misdiagnosis of the diabetes. He obviously has a problem that Medicine doesn't have the means to diagnose yet. All the bloodwork is still coming back normal.
I left my job, and moved my children here to be closer to my family. I'm staying home now, not working for the first time ever, and I feel both of the children are thriving! So far, so good.
It IS overwhelming at times. Like every other day! I pray for strength, for all of us. And wonder what tomorrow will bring. Most days, it brings me two smiling little faces and big hugs.
Patti receives e-mail at [email protected].
Original posting: 7 Dec 1997
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