Make A Child Smile

Daniel's Story
written by mom Linn

Daniel is our 3rd son and was born on August 11th, 1991. I had a fairly uneventful pregnancy, but he had a bit of trouble breathing at birth, mainly because they gave me too much epidural and I stopped breathing. He was a beautiful little guy with a head full of thick black hair. Daniel quickly improved and we went home three days later.

Daniel had a normal happy childhood and is homeschooled like the rest of his siblings. Everything has been typical until May of 2002 when Daniel was running and fell and hit his face and head on the corner of our deck. We immediately took him to the urgent care and they did x-rays, but they didn't show any fractures. We were all surprised about this, because his face was so swollen. He even had a black eye for 6 months.

Two months later he had his first seizure while we were out trying to repair our broken down car and his brothers were babysitting him. Upon arriving home we saw a note upon the door saying Daniel had a seizure. We jumped back in the car and immediately went to the hospital. When we got there they told us that sometimes kids will just have a seizure for no reason. and that it was highly unlikely he would ever have another one. A few days later we were staying up all night for an EEG when Daniel had a second seizure. It was the most frightening thing I have ever experienced. He made this awful groaning noise and stopped breathing and turned blue. He was once again taken to the hospital and we stayed in Tacoma, until his EEG was performed.

After his EEG in July 2002 we met the neurologist who not only told us he had Epilepsy, but also a heart arrhythmia. Daniel has the Intractable kind of Epilepsy which is when it can hardly be controlled by medication. He was put on medications anyway and we lived for 6 months with him acting crazy from the medications and still having Grand Mal seizures once to twice a week. After 6 months his seizures seemed to stop and so we stopped the medications. We were so thrilled that he stopped having these awful seizures where he would stop breathing and convulse all over. Just 6 months after this, Daniel fell and injured himself pretty severely and the doctors asked how did this happen and he said he fell on the grass. His doctor told me no way! I told him I had noticed him stopping and staring a lot and he told me to go back to the Neurosurgeon and have another EEG. After this it showed he was still having seizures, they just changed types and so he was put on another medication.

After this, life has just been a blur with hundreds of seizures. Daniel has had numerous seizure types and been on 6 different anti-epileptic medications, which usually do nothing but bring out more seizures and unwanted side effects. Daniel has even been on a special diet that did little more than make him sicker. We felt at this time there was little left as far as help for him, but to try a device called V.N.S. This device is like a pace maker that goes in the chest and has a lead that goes around the Vagus Nerve in the neck. The device sends electrical pulses to the brain and somehow this helps to reduce the number of seizures as well as the severity. We went through the process of getting approval from our insurance company, who were surprisingly quick to approve it and Daniel went through surgery on February 1st, 2005. We arrived at the hospital at 7:30 and they did all the usual prep work. Daniel was in surgery for about two hours and we got to see him about an hour after that. Not only did they place the V.N.S ,but they also made about a 4 inch cut in his leg to remove muscle for a biopsy.

They were also testing Daniel for Mitochondrial Disease. We found out Daniel did not have Mitochondrial disease. That was a good thing, but his VNS was just awful for him. He went from Grand mal seizures once a month, to daily. He was biting his lip, falling and injuring himself and chipping teeth and constantly in and out of hospitals and ambulances. After 6 months of a total nightmare of him doing nothing but seizing constantly the doctors decided to turn his VNS off. We at this time even looked into brain surgery and discovered he was not a candidate, but his Neurosurgeon didn't give up, and we tried one more medication and it has done wonders for him. It does make him overheat at times, but since we live in Washington it doesn't get all that hot except for in the summer.

Daniel right now is doing pretty well. It's been 5 months since his last Grand mal and his hypertension is even better, even though he still has daily petit mals. We have been meeting other families through various medical support groups and doing fun activities together. Daniel is doing well in school and loves to cook. He hopes to be a chef someday. Thank you for your kindness and support and for reading my son Daniel's story.