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In December 2020 we noticed Maci making strange movements with her arms raising up. In January 2021 we were jumping at a trampoline park and noticed Maci having several of these strange movements, it was very concerning. A Dr at Cook Children’s then recommend we go in for a 24hr EEG. They got her in right away. The EEG was abnormal right away with high and constant spike waves. We left Cooks knowing that Maci was having small seizures(Tonic)and that her brain activity was not normal. We started a seizure medication. We were extremely blessed by Dr. Perry being on call at the hospital (he no longer does that) and he took her on as his patient. Over the next month we slowly increased that med as we noticed more and more seizures. In March 2021 we were driving to get ice cream as a family, Maci had a 4-5 minute tonic clonic seizures. We rushed to the hospital. We then started to add more medicine to try and control Maci’s seizures. Since March we have tried several seizure medicines, Maci’s seizures have worsened even with the addition of medicine. We have done genetic testing and nothing has came up with red flags as to why this was happening. Dr. Perry told us in September/October that she was officially diagnosed with Lennox-Gastaut Syndrome. Along with uncontrollable seizures, Maci also has developmental delays.
In November 2021 Maci started to have even more seizures, wetting herself, and was losing a significant amount of weight. About a week before Thanksgiving Maci started to have clusters of seizures, that medicine wasn’t stopping. We had no idea what was in store, we left for vacation thinking this was a one time deal, but it only got worse while in TN. We ended up taking her to a hospital there and loading her with IV seizure meds just to try and get her home. We went right to Cooks once we were back, Maci was having tonic seizure clusters that were lasting 30 min and medicine wouldn’t stop them, this was happening about 5x a day.
We went to Cooks on Thanksgiving and immediately they began pumping her full of several different types of medicine, still nothing was working. After about 4-5 days it seemed like we were seeing a bit of relief. The next day Maci was so sick, puking, not able to move, she literally looked like death. She was really sick for about 3 days. The only level that was elevated was her ammonia, but not elevated enough to cause this type of sickness. The Dr. thinks it was a combination of all the meds & seizures, her body was put through so much. She finally started feeling better for 2 days. Then, it all went back downhill, she was back to clusters of seizures that weren’t controlled by medicine. We reached a point where she was status epilepticus and the Dr. said there was not much left to do, her body wasn’t responding to meds, they suggested moving to the ICU and putting her in a Coma to try and let her rest. Maci was in the ICU for about 1 week, the versed drip was not doing what we had hoped, she was on a continuous drip, at a high level, and we weren’t seeing improvement, and it wasn’t putting her to sleep. The Dr. didn’t want tp give much more versed as they were worried that they would need to intubate if we went higher. Her team of Dr.s then came up with a new game plan and wanted to try 3 days of a heavy dose of steroids. We also started new medicines. Finally Maci got a feeding tube as she lost more than 10lbs, and a PICC, thank goodness, she was poked from what I can figure more than 50 times, 5 infiltrated IV’s and absolutely no more places to try and put an IV. Finally we began to see fewer seizures and improvement. Maci’s movement and speech were limited. Maci started eating some. They moved us up to the 4th floor and she continued to get better. Maci started to spike a 103 fever which was caused by a UTI, minor bump in the road that caused a few seizures. On December 12th I begged and pleaded to please go home, finally at 7pm we were released.
Maci is still having 10-15 seizures/day. She has now started having seizures on her face. She’s getting stronger, eating more, and enjoys being home with her siblings. Maci isn’t back at 💯 as the girl we all know her as, but we take it day by day. We pray that the next hospital visit is far far away but are also aware that it could happen at anytime. For having Lennox Gastaut, Maci is doing very well. We will continue to let her do all of the fun kid things like riding bikes, running, jumping, and having fun! She has a zest for life like no other!
Thank YOU all of our prayer warriors for continuing to pray for Maci and our family!❤️
