Today Megan has had three sets of seizures. We were scheduled to see Dr. J today at 2 pm already. I asked him why this is happening and he said that he has no answer, this is how these seizures are. He wants to increase the dose of the ACTH starting tomorrow and see in one week what happens. He sees such improvement in her cognitive awareness that he does not want to let these seizures win. I can see that it has become different for him treating her since he has seen that she is inside there. That is the hardest thing to get accross to the doctors I think because they dont see what we see. How can they in their short visit. Meg is also never the same at a doctors office than she is at home. The chance they will get a look at a good moment is rare. I think he sees promise in her now. I know that cant change the incurable, but it can help with lots of other approaches. Everyone is asleep here and I should be too but the tension knots in my shoulders are so painful and keeping me awake.
I am also really debating how to go forward with future therapy. How much is too much? Am I trying to make her body do things it cant to reach the dreams that we envision for her? If she could tell me I am sure I would know these answers. I dont want to overdo it or underdo it. I have to find the balance here. Running all over the place all the time has not done very much to help her it seems since the seizures can undo it so quick. I will pray for guidance from up above to lead us in the right direction.
Have been thinking about this exerciser I saw at the World Disabilities Conference called the Quadrisizer (sp??) - it could do a lot at home and eliminate all of the running around and appointments and allow us to be in charge of each day again. I so miss that! The price tag is not cheap though. My friend Kristi in TN who has an 8 year old Mito daughter, Mayci is going to see it tomorrow I think since the company is about 4 hours from her in TN. The developer is a great guy. He built it for a family member initially. Kristi and I went to the conference together and I dragged her to the expo booth and told her I want one of these for Megan. She was impressed too. We met in Wisconsin over the summer and were instant friends. Aside from Megan and Mayci we seem to have a lot in common even though we are from different worlds - girl from Long Island originally and a girl from rural Tennessee. Who would think, right? Mayci also has had mycolonic seizures and is on several meds and is doing well right now. The HBOT has almost completely done away with the seizures for Mayci. She really benefited from it, but has had about 90 treaments in the heavy duty chamber. Write more later - going to try to sleep while Megan does.
Monday, December 29, 2008
Saturday, December 27, 2008
I am sitting here venting Meg right now so I thought I would make use of this "spare time" to update the blog with where we have been & why we have kinda dropped off the face of the earth. In late October when we were in NY for the wedding Meg got sick and also had a series of seizures. It always takes Meg so long to recover from being sick so we saw the neuro for a follow up on Nov. 17. I told him about the seizures and how I noticed that she is no longer focusing and her eyes look like a typewriter return constantly. I also was seeing her choking a lot right before our appt and feeding was increasingly difficult and I was even having to shut her feeding pump off because she was gagging from that too. Dr. J told me they sounded like myclonic seizures (in lieu of her normal complex/partial seizures) and he scheduled us for long term EEG the following Monday. We were able to capture sooooo many seizures in 24 hours. News was that they were what he thought and that the brain pattern did not have any regular pattern to it. Basically he said it was bad and these are the hardest types of seizures to control and she needed to start ACTH injections ASAP and we would have to wait and see how she responds to it. The drug was ordered on Tuesday before Thanksgiving and delivered the day after Thanksgiving. A 30 day supply is $73,000.00. Wow! We went back to Dr. J and stayed under his care from Monday through Thursday the 4th of Dec. 1st shot was given on Monday and I was petrified she would have a very bad reaction to it. Some of the side affects are really horrific, but there were not options. These seizures were taking her down so fast. She lost every thing she acquired since the prior June and it was really scary to see the neurological decline happen so quickly. I noticed in the 1st 24 hours that her seizures were happening less frequently. After the second dose I saw them happening a little less frequently. Megan also got an appetite on her to rival any man and ate like I have NEVER seen her eat before. She swallowed fine and digested pretty well and I did not have to vent her as much either. Really strange to see that. I can only guess that her brain knew what to tell her body to do without interference???? Her appetitie is still pretty good and she looks so healthy - she actually looks like she has a little pudge to her. She also has not been sick now in 7 weeks which is a record for her - longest she has ever gone without getting sick, even though the ACTH suppresses the immune system and increases your risk for infections. I have to contribute that to all of the supplements we have started. We were allowed to go home on Thursday because I was able to give her the injections okay (the needle is kind of long and the ACTH is gel and very thick going in) and she seemed to be doing better than expected. Dr. J was surprised himself. Her irritability was and is at an all time high though. The major problem with the treatement. She also became stiff all over. High tone kicked in even in areas she has not had before. She has always been more mixed tone but has become spastic and stiff everywhere. So now we are also on Baclofen for spasticity. I think Megan is on like 8 medicines 2 x a day now. That does not include her vitamins and minerals and supplements - the mito cocktail as it is known. It is crazy. Dont know how her body takes it. But I guess it would be worse without it. Week 5 starts on Monday which means I will only have to jab Meg for 14 more days. I hate giving her shots. I just HATE shots in general. Once we stop we dont know what to expect since noone can tell us. Everyone is different but hopefully it will squash the myclonic seizures/infantile spasms. From what I have read and heard any other type of seizure is better than these. Of course it will not "cure" her seizures. I get asked that a lot. It is just a treatment, not a cure. She will remain on seizure meds but which ones I dont know yet.
I am thankful to God that Megan is doing better. I was really afraid she would not respond to this and then what? Her body could not sustain the way it was and I was not ready to go there. My eyes hurt from crying thinking about it. Ryan and I prayed the morning we went in to start treatment and Ryan asked God to please make this medicine work for Megan so she can come home. I prayed the same thing! James is old enough to read the information and was afraid her heart would fail on the ACTH. I could see the relief on his face when she was doing okay. Pat just seemed quiet and sad - depressed.
Time to feed chubby ubby - she is howling at me! Hope you all had a great Christmas and have a wonderful New Year.
Thursday, December 25, 2008
It has been quite a while since I have been on here. We have had some seizure complications and have not had much time to update. The good news is Meg started ACTH by daily injection on December 1st to control the mycolonic seizures and is responding well.
It is Christmas Day and it has been a great one. Very calm and relaxing. Aunt Gwen, Uncle Mike, Amber and Erin are here from Atlanta to spend it with us. It has been fun to have them here. Meg loves to hang with cousing Amber too and it has been helpful to me. One of the side effects of the ACTH is "sleep disturbance". For here it means from about 1 am to 5 am. Amber got up with her Tuesday night and let me go back to bed. It was nice. Wish she could stay here but at 18 she has places to go!!!!