Hannah and I embarked on a new adventure today.... We had our long awaited for appointment with a new neurologist (4 months to be exact). I hadn't called her doctor her "new neuro" until today. Wasn't sure. I have been very unhappy with her neurologist in Cincinnati for.... ummm. probably 6 months now.
We went to Indianapolis, IN to University of Indiana Hospital, to see Dr. Salanova (she is also affiliated with Riley Children's Hospital). In my mind, we were getting a second opinion. I prayed all the way there. Prayed for hope... a new direction... to get out of a rut.... fresh eyes on my girl.... We weren't in the office for 10 minutes and I knew, in my heart, this was her new neurologist.
She took a detailed history (best she could, after all, Hannah 's history could take all day to go over!). She listened. She took diligent notes. She looked at reports I brought with me and reports she already had in her file. She heard my concerns and agreed changes need to be made.
She wants to admit Hannah to the Epilepsy Monitoring Unit... I knew this was coming; though not excited to hear the words. But understand why. Dr. Salanova wants to see what Hannah's EEG tracing looks like before she gives her recommendations. I shared my frustrations with our previous VEEG experiences. How, when we get there, NOTHING happens.... She simply said...."It's okay. It's okay if she doesn't have any break through seizures. Yes, I would like to see them, but I need to see what her spikes and all her abnormal activity looks like. I want to see if it comes from both sides of the brain, several parts of the brain, day or night, or both.... We can tell so much from the spikes her brain gives off......" Of course, I am thining, WHY IS SHE THE FIRST DOCTOR WHO HAS SAID THIS????? So...... no pressure. We will start off keeping her on her meds. She wants to see what she looks like with meds in her system. (great concept, huh?) If we don't get what we need, they will take her off meds. She said she wanted to schedule her for three days, more if we need longer....
She thinks Rufinimide may be an option as one of the very few meds left to try (her eyes widened when she saw the list of meds she has been on). She also thought she may be a great candidate for a VNS. I told her how we were on that track for surgery when insurance got in the way and then the neuro put it on hold.... She said "don't worry, we will work it out with the insurance and get her the help she needs." That compassion, those words brought tears to my eyes.
Ready for the kicker??? Dr. Salanova got her scheduled in the EMU for Monday!!!! As in, this coming Monday!!!! I couldn't believe it. She wanted her admitted to the University Hospital instead of Riley because she said the wait is much shorter... I'll say!!!!
So.... here we go again.... This time I have so much more hope in my heart.
Wednesday, February 17, 2010
Subscribe to:
Post Comments (Atom)
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....
No comments:
Post a Comment