I am baffled why Hannah is being slammed with seizures. Due to my personality, I like to know...WHY?? WHY all the sudden? What are we doing different??? It drives me crazy and keeps me up at night...
Sunday was actually a pretty good day. A day of rest for Hannah. She needed it. We all needed it...
she went back to school yesterday. Blitzen alerted at 2 pm. More Versed. She came home fairly decent. But then he alerted again at 7 pm. and again at 9 pm. More Versed....We were able to get her to sleep by 10:45. WHEW!! I am wore out. And, grateful my husband is home to help me get through this rough spot.
SO, I have had many conversations with Dr. Neuro's nurse. We are to the point where we HAVE to do something. Question is...what??? There are two meds left. Benzel and Vigabatrim. Benzel is not known to work well with complex partials (but, Hannah is not known for doing anything by the book, so who knows??). Vigabatrim was just reapproved in the US and is known for working well with partial complex seizures. Problem is that one of the big side affects can be peripheral vision loss. Irreversible. I am not sure I am willing to take that chance given her odds of ANY medication being effective at this point. Less than 5%.... I think right now I am leaning towards starting Benzel and hope for a 2-3 month "honeymoon" period. That time frame may get us close to haveing VNS surgery.
Which leads me to my next...ahem...biff.
I called and spoke with the case manager working closely with the insurance company. She just spoke with the insurance on Friday. Here it goes..."Her case has been received and is in process. It may take up to 90 days." WHAT??? "But usually only takes around 30 days." UUGGHHH!! We are well past 30 days. I am so annoyed. The technology is there..... We need it...... But THEY won't get out of the way. I am going to call the insurance company myself today. I am sure I won't get anywhere and it will just make me more angry, but at least I can say I tried... Mama bear is waking up!!!!!
Meanwhile.... I am waitng for another phone call from Dr. Neuro to see what we are going to do.....
We have less than one glorious week left with dad. It has been so nice to have dual parenting again....I know it will be hard on everyone to let him go back. Including him.
While he was home, this past weekend, his unit in Iraq had a horrible helicopter crash. They got caught in a sand storm and flipped over. 11 were injured and one soldier lost his life. It has really made me sick to my stomach. Gary wonders if any of them will ever be able to fly again, because of the mental anguish. This makes it all the harder to let him go....
Tuesday, September 22, 2009
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Beautiful Hannah...
How this journey started....
Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
3 comments:
Oh hon...I'm so sorry. We've been waiting almost 5 months for our SSI approval! It sucks that there are kids like Hannah...and Trevy...that really truly need things. But the system is so clogged that they have to wait. Here in RI...if I spoke Spanish our SSI would be approved ASAP. Not to sound bigoted...but that sucks. Anyway...
On the Vig topic. Vision loss IS a side effect...but a few things that you may not have heard & the your neuro may not have shared with you. 1) The vision loss has been only after LONG term use...our neuro gave us a baseline of 3 months. If it didn't work (for us it didn't) within 3 months than we would pull the plug. You should know within that timeframe if it'll be Hannah's miracle or not. 2) A recent study was released that said Taurine supplements are indicated while using Vigabtarin to combact the visual deficit. Scientists discovered that Vig inhibits the body's production of Taurine which is necessary for sight...so if you help the body with a supplement you may never have to deal with that. The same study recommended preventing exposure to direct light...have Hannah wear a hat or shades as often as possible. 3) Hannah is older...so it would be a great risk for you guys than it was for us. But the visual deficit is perephrial field ONLY. That made the decision easier for us. We felt that Trevor could learn to navigate without being able to see his side fields much better than having constant seizures.
Alrighty...that's all my seizure mom Vigabatrin guts for ya.
xoxo
...danielle
Danielle, thanks for the info. I was not aware of that. I honestly think doc is going to go with Benzel. His nurse said he isn't too keen on Vig. She hasn't called back today yet. Hopefully he will call me himself. It is nice to cut out the middle man!
I get what you mean about the spanich speaking....being middle class gets the least benefits. We get punished for doing things the right way.... ugh.
BUT, we must forge on and get out our mean mama voices....
Well...if Banz fails (not to be all seizure mom pessimistic!) I think Vig would be a reasonable next option. Especially since it has been so promising for CPs...
But at the end of the day...I think it's all really more experimentation than anything. Right.
(((((((hugs from one mean mama to another))))))
And I do mean mean as in super sexy when the vein in throbbing. :)
...danielle
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