After aidens last EEG we had a follow up appointment with his neurologist. It didn't quite go as I had hoped, in going through the EEG findings the neuro decided that in fact there was a very little change in aidens brain activity right before one of his breath holding spells. It was t clear seizure activity but because there was a change it made him lean more towards it being a seizure, my heart breaks beacause call it motherly intuition but I knew all along that they were. Which means he hasn't been as seizure free as we had thought. I am glad that our neuro was so thorough and decided to try him on a fairly new seizure drug that has proven to work well, so again we try another drug. The only godsent with this is being as active and close with the other os parents I have heard of the drug and knew other kids were in it with good results, I also feel so much more informed and able to know what the dr is doing therefor I feel like I have a better say in his care. I guess it's a little bit of control in a otherwise completely uncontrolled situation. So we started the new drug and low and behold within days the breath holding seizures have stopped.... We are now dealing with horrible bouts if constipation but we take what we can get...
Therapy has really picked up and changed for us, it was approved to Add addition private therapy in addition to his early intervention therapy which is great ! We went from 6x a month to now about 2x a week which is great but also very time consuming and with 1/2 of those therapies at their center it makes for some busy running around! I am pleased though that we were able to get him more help.
Other than a couple ear infections and colds aiden seems to be fairing really well on the medical front which I could not pray hard enough for, one of the downsides to meeting all these great and wonderful families that are plagued with the same syndrome is that you get to know them like family and the cold and flue season is the apsolute hardest on our kids, a simple cold turned I to pneumonia and just wreaks havoc on their little bodies, just in the last year I have had to hear of so many hospital stays and scary situations and watching as families are tore apart by the loss of their beautiful little girls.... It rocks me emotionally like I never could imagine and all I can deal is horrible grief and fear... Fear that I am watching what will some day be aiden, his body too tired from the havoc that the seizures do to his body. I have to just put it to the back of my mind and with every little angel we loose it gets harder to do... It just become such an overwhelming thought in your mind of all the pain the families and kids have to go through ... Just so unfair...
On a happier note the opportunity has come for all of us families to get together and meet In person! Something I could never even imagine could happen, they are putting together the first ever Ohtahara syndrome get together the end of June and come hell or high water we are going to try to scrape every dang penny together to take our family to go meet all of these amazing people we have come so close to, and of course to love and hug on all the wonderful os kids!!! I am so excited !!!!
So for now we are gearing up for Xmas and bringing in a new year !!!
No comments:
Post a Comment