We left the hospital on Monday morning....extremely frustrated. No seizures or wetting whilst at the apparently, too fun to be at, hospital!!! She still had the same abnormal spikes and wave slowings in the frontal and temporal regions. This was mostly on the left side, but some on the right side too...
I really did not think these seizures were brought on by stress and over stimulation. I was wrong. She went to school yesterday and started seizing and wetting again. ugh... (no big surprise though)... She has started wearing pull ups now. Morning and night. She actually likes them better than poise pads. Now I am searching to see if I can find help in paying for them...If anyone has any secrets, do tell!!!
So, tomorrow we go to neurology for her follow up. Good news is, she has finally adjusted to the increased dose of Depakote. I really think the behavior and increased seizure issues a couple weeks ago were because we increased too fast. She has leveled off back to her normal...
We are hoping (keeping our fingers crossed) that the Dravet report is back. It will only be 4 weeks, but the Dr. felt there was a good chance it would be there. I am SOOO NERVOUS.... If she is positive for the gene mutation, more than likely he will change her meds completely (now that we are leveled off!!). There is a good combination of medications that work well with Dravet kids. If she is negative for the gene mutation... I have no idea what's next... I guess that's what Dr. Neuro gets paid the big bucks for!!! I feel like we will be back at square one....
Hopefully tomorrow is THE day.... the day we find out (after 9 years of searching) what syndrome Hannah has.... (BTW... still feel very torn as to how I feel about this... I will be absolutely relieved to know...but devastated with what it is. Not a great diagnosis at all....)
Wednesday, October 27, 2010
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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....
1 comment:
Oh Marcia, I'm praying for you all. I completly understand your delima of actually finding out the diagnoses. Hang in there :) Prayers coming your way.
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