Well one thing that we have learned with Dawson is that he will always keep us on our toes. One thing that we have also learned with Trisomy 18, the genetic disorder Dawson has, is that anything could happen or start when you least expect it. That is the way that it was with several things. When he was one month old he begin to go into congestive heart failure and had to have his 1st heart surgery. At 6 months his airway had become so floppy that he was diagnosed with tracheomalachia and needed a trach to help with that, and when he was 2 he was having numerous UTI's (one with a fever of 105) and we discovered that he had bladder reflux. Oh I forgot right after his trach was removed it was discovered that he had severe sleep apnea causing his oxygen levels to drop down into the 60's and would need to be on CPAP.
Well in April of this year what we were not expecting happened. We had just went to lunch after church and we were riding down Woodruff Rd. Josh looked back and said, "Dawson is blue and I don't think he is breathing!" Well as a mother, this is definately not the words you want to hear about your child. When I looked back he was a greyish/blue and in a blank stare at me. When I tried to rub his chest his head just slumped over. We immediately pulled over in the middle of Woodruff road and started working with him. We called the EMS and we were taken directly to the hospital. Well we didn't have a sat monitor on him that time so we had no idea just how bad it was. They didn't do anything on that trip to the ER because they didn't know if it was an apnea from his airway closing off or if it was a seizure. I don't know about everyone else but that word, SEIZURE, scared me to death. He was fine and then about 3 weeks later we were out and he did it again so we went straight to the ER from the doctors office. This time we had his sat monitor on and his oxygen levels went down to the high 50's. Both of the episodes had presented the same way. He would have a big yawn, start a "blank" stare, and then he would turn blue and his sats would drop. Each time his heart rate went up.
So at that time they decided to try a very mild dose of Keppra. We started out with 1 ml of Keppra two times a day. It knocked him for a loop. He slept for 2 days straight. So I called them and they went down to .5 mls 2 times a day. It was working!! We had gotten up to 1.5 mls 2 times a day and he was tolerating it well and was seizure free. We had a great summer seizure free and then in September, on our anniversary, he started the episodes again. Only this time he would have one that lasted about 30 seconds and then 1-2 minutes later he would have another one. We upped his Keppra several times and they continued to happen. They had gotten so frequent that for 6 weeks straight we had one every Monday between 5-7 pm. We could almost predict when they would happen. The doctor that Dawson was seeing at the time just kept wanting to up his meds but kept telling us that he didn't know for sure if it was seizures or if it was his airway. Well we really prayed about it and talked with our pediatrician. We were at the point of driving to Charleston just to see someone else. Well when we talked with our amazing pediatrician, which might I add loves Jesus a WHOLE bunch, he told us to try one other doctor before we did that. So we agreed. Oh, I forgot to tell you that we, along with Dr. Dobson and Dr.Gault, thought it would be a good idea that we do a long term EEG in the hospital to determine if it was definately seizure activity. So we mentioned it to our neurologist and after some hesitation, he agreed to do a long-term EEG. He would put us in the hospital for up to 4 days and monitor him to hopefully catch one. It was a really weird feeling when we were there that where we had been praying, "God help Dawson to never have another seizure" to "God please let him have one of these seizures while we are on this test." We just really wanted a definate answer because I think the unknown of whether it was a seizure or if it was his airway and he needed a trach back was what was the scariest. Well that was the 6th week and like clockwork he had one and they saw it on the EEG machine, PRAISE THE LORD!! The doctor that we had been seeing came in on Tuesday and said, "Well yesterday was Monday, did he have one?" I think he was a little suprised when I told him yes. So it was determined that he was having seizures. He changed his Keppra from 4 mls two times a day to a total of 10 mls three times a day. He had one more seizure after that and the doctor added another med, Klonopin, which is in the same family with Diastat. He started him on a dose that just knocked him out so we cut the dose in half and it seemed to stop the seizures. They had stopped for almost a month and we went back for our follow-up.
So when we went back for our follow-up, Dr. Dobson called in and switched us to the new doctor. So
we started seeing Dr. Addie Hunnicut. (well to say the least, we can add her to the list of amazing doctors that God has blessed us with) She was amazing! The first time that we went in to see her she not only got alot of information on Dawson but she gave us alot of information about Dawson's seizures. This is the first time that we had gotten any detailed information. She showed us the activity that they had captured on the EEG and even took the time to explain it. Dr. Hunnicut told us at that time that his diagnosis was complex partial seizures. She then had a plan that she explained in detail to us. Her plan was to try and switch Dawson to another med other than Klonopin because it is in the same family with Diastat that they use as an emergency drug, and they want to make sure that he would respond to the emergency drug if necessary. So we started Trileptal with the Klonopin with the hope that we would begin to ween it after about a week. We started to ween but then he had a seizure so she decided to wait until the Trileptal had been in his system for 2 weeks. Well when he had been on it for 2 weeks he broke out in a head-to-toe red rash. (Welps!!) So we stopped the Trileptal and started with Topamax. Well we are still trying to adjust his dose but he has done well on it. Hopefully soon we will be able to start to ween his Klonopin again but as for know we are on 3 seizure meds. :(
I know this was alot of information but maybe it will help some one else. I wish that I had been able to find some kind of information when I was starting this journey. I will keep everyone posted.
One of the many parts of our journey and continually we are remined, God is faithful!!
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