If you have never had the displeasure of filing for social security benefits for your child, it’s a sobering experience. Having to file medical forms, financial forms and telling the social security there is something medical wrong with your child makes the situation even more real. The process for Lucy took about 2 hours and they ask hundreds of questions. I had all of her medical information including records, numbers of agencies, doctors, specialist and nurses that have all seen her. I even had her EEGs in case they were needed. I had started the forms and application online, which also was a positive on Lucy’s side. Having everything together (which is what I normally do for all the kids because you never know who needs what) and organized and listed can only helped Lucy’s case.
Now we are stuck in the waiting limbo period. Usually this would take 150 days, but because I had all of her records, that time was cut down a bit. It’s not guaranteed she’s eligible because she’s not totally disabled, but she does have some physical limitations as to what she’s able to do. Even if she’s denied, her information will remain on file, so the appealing process is easy. Her medical needs and gas expenses are going to get out of control extremely quick, so I would rather have all her ducks in a row before she becomes inevitably worse.
Even though her night-time seizures are easing off, I’ve noticed more during the day. This could either be from me paying attention more closely, or an actual increase in seizure activity. She’ll have a starring spell or an actual convulsion, then after each, a tremendous tantrum will usually follow.
She also doesn’t like her head touched by anyone. She has always had an issue with people touching her head, which was just another sign I missed. Of course I still have to wash and brush her hair, which are two battles I am constantly fighting.
Early this morning it was cool and cloudy enough to take Lucy outside, with her sister, Jaina in tow. At first Lucy chased the kitties around, then played with the dog, played in the playground for a bit, and then went for a walk. During our walk, she started to whine and complain about not wanting to walk. At first It thought she was getting upset at me not letting her go after a neighborhood cat, but after she quickly got over Mommy saying no, she started to rub her head and enter the staring spell. I carried her back home (ouch, my sciatica!), were she wanted Grandma and through a convulsive fit. Once calmed down, she acted as if nothing had happened at all. Upon researching the connection between epilepsy and tantrum, I learned it’s very common to happen after a seizure because seizures cause confusion and irritability, amongst other issues.
Two things that I have noticed that calm Lucy down are warm milk (bottle) and warm baths. I speculate the tryptophan within the milk and the warmth in the bath water lulls her nerves. I try to encourage naps during the afternoon to give her brain a rest, but that’s a losing battle at this point.
Lucy’s medication dosage increased as of yesterday. This will continue to happen for another 2 weeks. Most seizure medications are weight based, and in a younger child, the medication is administered in different doses as she continues to gain weight. If she was an adult, this would not be the case.
I have also been meaning to upload her EEG images. As soon as I finish converting the images to JPEG, I’ll get them up. When the technician processed her EEG, she played everything on a disc, in a file format that I was unfamiliar with, she also included the application for me to be able to read them on my computer, so that’s pretty much the holdup…converting 146 files to JPEG. I just might skip some of them and post the most significant images, will see.
Until next time…