LIFE WITH BLITZEN...: March 2010

Wednesday, March 24, 2010

Here we come....

An exciting thing happened today....

I decided I needed to get Hannah another appointment with the sleep clinic. Her sleeping patterns have really deteriorated in the last several months. I was holding out to talk with the new Dr. Neuro about it. Hoping maybe she would have some sort of explanation, meds or otherwise, and tell me how to fix it! Of course, we all know, it didn't happen that way... At our follow up appointment last week, I brought it up to her and honestly, she really passed it off. She wanted me to discuss that with the sleep docs. (obviously she didn't think it was medication related, at least not her seizure meds....) So, I called the clinic today. We chatted and I caught her up on the latest happenings....

Hannah has a sleep disorder called alveolar hypoventilation syndrome. It basically means she has too much carbon dioxide in her body when she sleeps. Her brain is constantly waking her up and causing her to never get in a good sleep cycle. To help this, she wears a BI PAP when she sleeps. It does help to give her a better quality sleep. However, in the last several months, she has difficulty getting to sleep, wakes up in the middle of the night, has trouble getting up in the morning, falls asleep in school and often and combination of all the above....

So today, she said she really wants to refer her to new doctor.... There is now a neurologist at Cincinnati Children's Hospital who just finished her fellowship as a sleep doc!!!! NO WAY!!

Drum roll please.....

Her speciality is kids with epilepsy who have sleep disorders!!!!!!!!!

Oh where, oh where, have you been???? This may very well be a two for one deal... I am so excited that she may bring new insight in how these diagnoses are connected. Hannah is right up this doc's alley!

The sleep clinic was able to "slip us through the back door" and got us an appointment in April... YAY!

You betcha..... HERE WE COME!!!

Monday, March 22, 2010

PURPLE DAY.....

This Friday...

March 26th...

Is Purple Day!!

Will you join us and WEAR PURPLE....

In honor of Hannah...and all the precious children with seizures?!

Go to http://purpleday.org/ to learn more about Purple Day
and the incredible little girl who came up with this amazing idea.....

Thursday, March 18, 2010

playing the seizure game....

We had Hannah's VEEG follow up yesterday... didn't quite go as I had invisioned..... I don't really know what I expected....except hoping the new Dr. Neuro was a miracle worker, I guess. EEG was definitely abnormal. spikes in temporal region on both sides and also in the central parietal region (I think that is a new area...don't remember that from past EEG's). Slowings in the waveform all over the place. These all occurred in wake and sleep hours. SO, Dr. Neuro wants to keep with the Depakote but increase it (Depakote seems to be a good med for her in terms of low side affects). Two increases within the next two weeks. She wants to check her levels in 3 weeks. I will call her in 2 months to let her know how things are going.... She said, we would "go from there." Not sure what that is....

I can appreciate this step in "the plan." I think she wants to see what getting Hannah on a really hefty dose will do for her seizures. However, with Hannah being on her 12th seizure medication, I know what will happen... we go through a honeymoon period. seizures continue. we continue to raise until the side affects are either too severe or we can't go any higher....Then, onto a new med....start all over. You know, the seizure game. I am so sick of it. But, there is nothing else to do. I guess I was hoping she would turn nothing into something....

She isn't giving up on Hannah. That is the most important thing. So, we keep on...keeping on....

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....