So one thing I haven't mentioned is that I have seen an increase in the nature of Jude's seizures. Yesterday I counted 15 seizures, which is nothing we cannot handle, but they are mimicking the old seizures. He is squeezing his body together, clapping his hands tight, rolling his head back, and either making a unusual laugh, or making some type of audible noise. After he completes this motion he is spending about ten minutes opening and closing his mouth, this indicates strong seizures in Jude. Jude's repetitive opening and closing of his mouth led me to initially think he was having seizures, and his original diagnosis at three months. I am unsure as to why he is reverting back to his old seizures, but making some progress physically? Is this an issue with the medication? So confusing.
SO while out this weekend we noticed that Jude's issues are so much more apparent in public now. We don't have a problem with this, it's just more noticeable. We feel so much more comfortable in our own environment with him because here he is just Jude. No one is staring at him, no one is pointing, no one is asking us what happened. I know I shouldn't feel this way, but again it's a true feeling, and I stated I would be truthful on this blog. I just like holding him at home, and relishing in his own beautiful traits.
I also stated that I sent Jude's fair hearing packet off to the state today, but when I got home there was another packet waiting on us. It seems it was Jude's pediatrician that signed off on the fact he doesn't need more help, yet his therapists, nurse, and neuro seem to think otherwise. I was rather shocked because we have had great results with this doctor. Sometimes I think he is to passive regarding medical situations (ie, when Jude had CDIF, and pneumonia and he sent us home). In some circumstances I think this is great because I believe antibiotics are over prescribed, but this time I don't agree. It also surprises me that someone in the medical industry would make this assumption, when they have to know how difficult things are. I just remind myself that there are many other children with more pressing needs.
5 comments:
hi jen,
i haven’t stopped over in a bit so i thought i would so so and say “hi” and see how life in your part of blogesphere is… jude is getting so big and such a cutie! how is emily's smile box stuff coming along? i know how the seizures can be problematic and when a glass of wine just doesn't seem to be enough... keep the faith.. and i'm here if you need a shoulder... been there done that!
shelley :)
i would want to know why he/she signed off that Jude doesn't need it. Ask your Neuro if they would take over the paper work for services. Thats who does all our paperwork.
Ger
um, yeah. i think i'd have the neuro complete the "packet." they can be more specific with the seizure stuff, and would be the ones writing orders for the nurse anyway.
sorry about the increase in seizures. i'm surprised your neurologist isn't changing meds if the increase isn't showing improvement. i know how frustrating that can be. ugh.
hope today is a little better.
Crap....where is our seizures suck blog, Jenn? We gotta do one! Poor Jude. I can kind of relate to how you feel about Jude out in public but Faith is not as involved as Jude so I know it must be harder. I know several families whose children are more like Jude and I hear them say the same thing. I know one mom who started a support group in our area (her son was about 10 at the time) but she NEVER brought him to any of the support groups. She left him at home most of the time with respite or family members.
I do know that IS can become a different form of epilepsy over time. Happened to a friend of mine although her son is older.
I'm with Bronx--consult the neuro for that paperwork. There's no way that ped understands what it's like to have a child that's contantly in danger of seizing.
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