Well, if I had any grand hopes that the New Year was going to be seizure free for Jenelle, they went out the window this morning when Jenelle had another 4 minute grand mal. I've been home with Jenelle all week as she is on break without daycare, and I still honestly think we may be on the tail end of getting her meds right. Since adding Vitamin B6 and finally making it to the prescribed dose of Banzel, there has been some noticeable improvement with her absence seizures (i.e. - we are seeing less!) It is still too early to tell, and Dr. Shields said it could take at least 6 weeks at the prescribed dose of Banzel until we start seeing a significant difference. So, the seizure today while discouraging, is still acceptable in that we don't have to give up just yet. I'm encouraged that at least one seizure type seems to have improved, although I hate watching a grand mal as they are so horrific.
And, Jenelle had a trip to the ER this week, but for once it was not seizure related. As Elmo on Sesame Street says, "Everybody poops!" to which I say "except Jenelle!" Poor Miss Jenelle has been dealing with a horrible bout of constipation since before Christmas. Last Tuesday, Nicki and I took the kids to Irvine Park with a picnic lunch from Burger King. As I was feeding Jenelle a cheeseburger, she began to scream and cry. Jenelle loves her food, so this was definitely not normal. I started to think back in my mind, and realized her last significant BM was on Christmas Eve. Ironically, the day before Jenelle had swallowed what I think may have been a pony tail holder. I then started to do the math, and worried that she had an obstruction or blocked intestine. I left the boys with Nicki at Irvine Park and Grandma met us at the gate and took us to the ER.
The ER was jammed packed, and it took us 2 1/2 hours just to get to triage. When taking her vitals, I joked with the nurse and suggested we just get an x-ray while we were still waiting in the lobby. She actually agreed that it would be a good idea to speed things along. Half an hour later, we were called back for an x-ray; an hour after that we finally saw a doctor. The good news is that they could not see an obstruction, and the bad that Jenelle was full of stool. Two adult sized enemas later and she passed some stool, but not what we were hoping for. The doctor sent us home with advice to give her Miralax daily for the next 6 months. We think her medication could be making her constipation worse.
Since coming home, Jenelle has had a hard time (no pun intended) with her bowel movements. The only way she has passed stool is from the help of a glycerin suppository or an enema. I called our pediatrician two days later for advice, and he said not to worry as long as we were getting something out. He warned not to use the laxatives and enemas too frequently because she could become at risk of becoming dependant on them. Every other day was acceptable.
Other than the BM issue and today's seizures, it has been a wonderful holiday. I've been meaning to post photos, but find that when I have a few spare moments, a nap is more attractive than playing on the laptop. I'm doing well and (knock on wood) have managed to avoid illness this holiday. Even with the 6 hours in the ER for Jenelle.
Jack celebrated his 10th birthday on Saturday. We had 7 boys spend the night on New Year's Eve and celebrated his birthday for once with friends on the actual day. Last night before going to bed, Jack announced that he was now a "tween". Oh boy, here we go!
I really think 2011 is going to be a fantastic year, and I'm not just saying that because 11 is my lucky number. I think we'll finally gain back the seizure control we lost for Jenelle and my health should continue to improve as well. My only New Year's Resolution is to finish chemotherapy this year; and if all goes well, that will happen in August!
Thank you for continued thoughts and prayers. I'll post some photos soon!
Sunday, January 02, 2011
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Expecting 'fantastic' for your family, too! Happy to read about your good health, and that Jenelle's problem is resolving (-ed - hope?).
Any chance she could get into a winter swim program?
My name is Jenny. I have a son that is soon to be 5 with very similar symptoms as your daughter. The doctors are reluctant to call it Lennox-Gastaut but he does meet most of the criteria. He has had every test in the book and even sees a metabolic neurologist. No one can seem to pin point an abnormality or cause. I recently came in contact with a doctor who feels that my son may have celiac disease. I wonder if you have ever heard about this with your daughter. Eventhough my son had been gluten-free with the ketogenic diet, it had never repaired his bowels, therefore he was not absorbing nutrients. We started him on these special vitamins 3 weeks ago and are already seeing improvements. I hope this helps and I would appreciate your feedback.My email is email@example.com.
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