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Vent (OT)

Posted by on May. 3, 2013 at 9:56 AM
  • 7 Replies

 Avvanah is 19 months old. Back in October when she was 12 months old she  had her first seizure. She woke up that day perfectly normal. Her dad went to work and we settled down for a quiet afternoon at home and then church.
At 1:30pm that day she stiffened, eyes rolled back in her head, and she started shaking. She turned white as chalk and then blue. Her heart was racing and she wasn't breathing. I called EMS and it was the scariest 15 minutes of my life. Even after she stopped shaking she was unresponsive, blue, and not breathing.  The ambulance arrived, stuck this metal thing down her throat and got her breathing again. On the way to the ambulance she had seizure number 2.
At the hospital she registered as a temp of 100.1 which is not considered a fever. She was admitted for two days and they did an EEG that was normal and sent her home. They had no explanation so they said it was probably from her slightly elevated temp. It made no sense but hey i'm not a doctor!
We took her home and she was fine. Feb. it happened again and she had two more, ambulance took her to the ER and she was sent back home with no explanation. They scheduled her to see a Neurologist but we had to wait until May as he is the only one in this area that sees children. End of march she had two more.
A few weeks ago she had three sseizures in less then 24 hours. One was 2 minutes one was 3 1/2 minutes and the other was 6 minutes and she had to have medication to get it to stop. She was transferred to the children's hospital two hours away.
They did a CT scan, EEG, and MRI. The CT and MRI were Normal but her EEG showed seizure activity in the right side of her brain. They diagnosed her with Epilepsy and started her on medication. She had another three minute seizure last week and they have increased her meds again.
She has side effects from the meds. She doesn't eat, and isn't even nursing as much as she used to. She has lost a pound and a half in the last few weeks. She was already underweight and only in the 5% before the meds, hard to tell if she is even there anymore. She is irritable and is so hard to manage. There is nothing we can do about it but deal with it. If she keeps having these seizures that last so long she could get brain damage!
While she was in the last hosptail that was two weeks away my husband lost his morning job and was stuck with just his evening job that is miniiumum wage.
I can't get a job because of her and no one will watch her due to everything that is going on with her. I don't know what else to do. I watch a dog during the day for 350.00 dollars a month but even with that income we're swimming in debt. Our bills are so behind it isn't funny. Our water and gas has been shut off but thankfully my MIL paid them so they could get turned back on. I don't  know what to do.
I heard you can apply for SSI for a child with this disorder but i don't want to seem like a money hungry person who is just out for the cash. I am so lost.  :-(

by on May. 3, 2013 at 9:56 AM
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Replies (1-7):
by Ruby Member on May. 3, 2013 at 10:17 AM
1 mom liked this
You are not money hungry. You are in a desperate situation. Do what you need to do. That's what public assistance is for.
by Crystal on May. 3, 2013 at 10:25 AM

I see absolutely nothing wrong with you applying for SSI in your situation.  That's not money hungry and is exactly what SSI is for.


by Group Admin - Stacy on May. 3, 2013 at 10:48 AM
I agree with the others that this is exactly the situation SSI is for. Because of her diagnosis you might incur excessive costs such as medication and therapies, and to further complicate it, it's not like you can easily go back to work right now.

I'm sorry your daughter is having these frightening seizures. Hopefully that neurologist can help you all get a handle on what is owing on.
by on May. 3, 2013 at 10:54 AM

You need to apply for everything you qualify for! Normally I'm pretty anti PA (a lot of people in my family abuse the system) but you are well justified! You probably qualify for a lot more than SSI.  Please take care of yourself financially so you can take care of her.  Hugs mama.

by Bronze Member on May. 3, 2013 at 11:22 AM

 Thanks guys, I am leaning towards doing just that so i can make sure she has a good safe place to live and we can focus on her care. She is such an amazing little girl

by on May. 3, 2013 at 11:56 AM

Apply for the SSI.  It will help with all the medical expenses, etc.  It will help to keep your financial stresses down a bit.

by Kate on May. 3, 2013 at 12:06 PM

Apply for the SSI.  That's what it's there for.

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