What a difference one little pill has made in our lives. Two weeks ago I lowered Magnolia’s seizure meds. She was taking 3 pills in the AM and 3 pills in the evening of Topirimate aka Topimax. She now takes 2 pills in the morning and 3 pills in the evening. That’s it, one pill. We have seen an increase in her energy, alertness, instincts and just overall better. She still isn’t using her Tobii as much as she was before the seizure meds but I’m hoping that she is just being stubborn. School year is coming to an end and we are really going to focus on reading and writing this summer and making her build her sentences with her Tobii. I’m hoping with extra attention, her willingness and ability to use her computer increases.
Maggie did have one 10 second seizure at horse therapy yesterday, but that’s it. In two weeks, one 10 second seizure. It has definitely been worthwhile to lower her meds. I wish I had done it sooner, but coulda, shoulda, woulda. And I didn’t know.
The other interesting factor in this seizure roller coaster ride, is the gut brain correlation. While talking to Magnolia’s epilepsy Neurologist, she mentioned epileptic patients have more seizures when they are constipated. A patient that is having GI issues (gastrointestinal) could see an increase in seizures, they are correlated. Well, well, well….Maggie has had a rough GI year as well, especially the past 6 months. We have talked to a Rett specialist, nutritionist and Maggie’s pediatrician. Her pediatrician had tests run. Nothing has showed up irregular. Not an infection, a virus, vitamin deficiencies, everything is normal. Well, its not normal.
On Monday we are going to a new GI specialist, she also specializes in kids with developmental issues. So hopefully, she is our missing key. Also, she hasn’t gained weight in two years. She just can’t seem to break 40 lbs. I’d say lucky her, but she needs to gain weight. I can’t seem to lose 5 lbs and she just can’t seem to gain it. I guess we both have issues, but hers actually matter.
We will take all of the prayers, good vibes, healing vibes, good juju, crossed fingers and good thoughts, our way. Its been a year of us battling her GI issues. If we can mend her GI problems, so many other problems will subside.
3 thoughts on “One little pill”
Sending love and prayers your way. Hoping for all good things for Maggie!
Have you ever talked to her doctor about Trokendi XR it’s an extended release version of topiramate IR. It’s suppose to have fewer side effects such as fatigue and cognitive side effects. It’s only once a day rather than twice a day but some medicine as she is currently taking.
We have a Neurologist appointment in a couple of weeks. I’ll bring this up. Thank you for the idea.