Monday, June 29, 2009

Trying a new medication

Dr. Neuro was back in the office today (back from a very LONG two week vacation!!). His nurse updated him on Hannah's last two weeks. I had told her we were going to be at the hospital today for her pulmonary appointment so if he wanted to see her , we could be there! He did want to see her. I do love our neurologist!! Our little "trial" to see if school is her biggest stressor, therefore bringing on more seizures, wasn't proving to be true. She has increased her seizures and behavior has definitely gotten worse. So, after an hour long discussion with her wonderful doc, we decided to try another medication. He wants to hold off on the Rufinimide right now. We are trying to figure out if her combativeness and aggression is bringing on the seizures or if it is all pre seizure behavior. We are going to try Clonidine to see if it helps weed out behavior and seizures. We will start it by the end of the week. He wants to check with her cardiologist before we start it. He doesn't want to drop her blood pressure too much. He doesn't know if this will help or not. He said we should know within a few weeks. If not, at least we know VNS is on the way! I know VNS won't be a "cure", but I am hoping for reduction in seizures. At this point, we don't have any other options left. A very daunting thought.
He increased her dosage Valium (unfortunately, I needed to use tonight and still didn't seem to do much good). He wants me to try the Versed again to see if she has another negative reaction.
He has put through the "medical necessity" paperwork to start the process to get the VNS. Once it is approved with insurance we will have an appointment with the neurosurgeon. He thought we would have the surgery by the end of the year.
Dr. Neuro is also referring us back to genetics. We had been there a year and half ago and did all the basic genetic tests (all of which were negative). They will now turn their attention to see if she has something mitochondrial in nature. In order to determine this, she will have to have a skin and muscle biopsy. I really didn't want to put her through this, but I think it is a necessary step at this point.

After this very long appointment, we went to her pulmonary appointment. She started to completely lose control of herself. This is not fun while in front of a doctor!! Since it has been 2 years since her last sleep study, she is ordering another one. She wants to see if her settings need to be changed since she has grown so much! We will schedule this hopefully yet this summer.

Whew! What a day!! (On the the way home, there was an accident on the highway. Traffic was really backed up. It took me twice as long to get home. ugh)... With the long day, and everything building up for Hannah, she had a complex partial seizure and needed Valium. Tomorrow is another day!!

Monday, June 22, 2009

Still having a rough time....

Things are still going rough for Hannah. She continues to have an increase in her seizures. I think we will be starting a new medication, Rufinimide, soon. Hopefully it will give her some relief. Her complex partials have been lasting for longer periods of time, sometimes hours. I know this takes a toll on her body (physically and emotionally).

We went today for a check up with her cardiologist. This was the first appointment since we had raised her BP medication. Unfortunately, it didn't go like I thought it would. Her blood pressure remains elevated (some were even higher!!). A very daunting feeling, not knowing why. The cardiologist doesn't know why either. She said she usually sees it go up when 1. the kids become couch potatoes and eat a bunch of salt (not the case, at all!!) or 2. they have a big weight gain (again, not the case. She has lost 2 pounds since March). Cardio decided to put her on a beta blocker to see if this helps. We have another BP check in 2 weeks, a liver enzyme check in 4 weeks and follow up with cardio in 3 months (unless needed sooner). She said if it is still uncontrolled, she will start to get a little more worried about her heart. She will start a bunch of testing to see if a cause can be found....

Thursday, June 18, 2009

we keep on keeping on.....

Hannah is still having some rough days full of seizures. A few nights ago, she had two tonic seizures. I would have given rescue meds with one more, but fortunately, she stopped. The next morning, though, was very rough. She woke up having seizure activity. She was extremely argumentative and combative. Her speech was slurred. By 12:30 pm Blitzen alerted and I gave the new Versed nasal spray. Within 10 minutes she became calm and quiet. Within 45 minutes she fell asleep. I rested too, hoping she would be a different child when she woke up. She slept one hour. Much to my dismay, when she woke up she was even more combative. I had bruises to show for it. She was completely out of control. This went on for 3 hours. I was just about to head to the ER. At that point, I wasn't sure if she was having seizures or a reaction to the Versed. I still am not sure what it was. After 3 1/2 hours, she finally started to calm down. ugh.
I called the neurologist the next day. They aren't sure if it was a reaction or not. They want me to try it again to see what kind of reaction she has to it.
The staff at Children's Hospital are working on getting the VNS approved through insurance. Once it is approved, we will meet with the neurosurgeon that will put her VNS in place. Hopefully she can have surgery by the end of the year.

Wednesday, June 3, 2009

We are home

We are home from the hospital. It was a very long week. We did not get all the information we needed , but I don't think brain surgery is in Hannah's cards right now. We have a temporary medication plan in place. We are looking to do the VNS (vagus nerve stimulator) by the end of the year. Her neurologist isn't very excited about either of the two medications left to try. So we are hoping and praying that the VNS will help reduce the amount of her seizures.
We did find out through our week long hospital stay that Hannah's blood pressure is back up again. She has been on medication and has not gained any weight (in fact she has lost two pounds since her last check in Feb). So the cardiologist consulted with us and increased her medication. She will see her back in three weeks to check it again. I think she will also order another echocardiogram to check on her heart.
Don't you know, we have been home for two days and Blitzen alerted tonight! So, I gave her emergency medication; which didn't work right away. After about an hour, she finally went to sleep. Hopefully we will have a quiet night....

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....