The search is on....Again.

I got Hannah's genetics appointment scheduled for July 29. I was amazed it was that soon. We are going back to continue our search for THE overall diagnosis. We were there about a year ago. We did all the basic genetic work up then and everything came back normal. They told me the next step would be to do a skin and muscle biopsy to see if it's mitochondrial in nature. I wasn't ready to go there. Who wants to put theis child through that?? But I don't feel like we have a choice now. All of her specialists feel like we need to do this. So we are.
Technology may have improved in the last year, so they may repeat some tests that were already done. We are seeing a different doctor this time, which may be a good thing. That remains to be seen.
Hannah has had several seizures over the last several days. She had one last night that was one of the harder ones she has had in awhile. Blitzen is having a hard time too. Because of all the medication changes her "scent" is changing. This confuses him. He knows it's there, but it's different. So, I continue to train with him almost every night until her medication is a little more stable. Hopefully then I can regain complete trust in him. He is still such a good boy! We are still madly in love with him.

Trip to the zoo...

Today was Military Appreciation Day at the Columbus Zoo. Because of that, we were able to get in for free!! Who can pass that up?? It really wasn't too hot today but there were so many people there. I have never seen so many people at a zoo before (and it wasn't even the weekend yet). This was Blitzen's first trip to a zoo. I was a little nervous because I have heard many stories about service dogs at the zoo! Sometimes the caged animals don't appreciate the dogs' freedom. But, Blitzen did beautifully!! Although, I am not sure he even saw any animals. I think all he saw were legs!!!

I ended up renting a stroller, at least for Eli to ride in. As it turned out, all 3 kids rode in the stroller!! I got a good workout today. I am so glad I had it though. Hannah really faded in the afternoon. I am not sure if it's the new medication, the heat, the people, or all of the above. She almost fell asleep while I attempted to push them through the zoo.

Soooo many people asked to pet him. (I think they thought we were part of the zoo!! lol) I got the the point I said "sorry, he's working." I don't usually do that, but we would not have gotten anywhere today. Most people were very kind, but there were the usual few, rude (very rude) people.

Our ride home was a different story though. Hannah was so tired and started getting very agitated. She became more and more upset and started having a complex partial seizure. She was perseverating on one thing over and over. Then she became very aggressive...towards me....while I'm driving!!!! uh, not good. So I pulled over and got her rescue med out. She took it, but it really didn't help much. I wish I would of had the Versed with me. For the next several hours, she really struggled with gaining control. I was able to catch some of it on video. I really want to show her doctor's the extremes she has....

Starting new medication

Dr. Neuro spoke with Dr. Cardio and she said it was okay to start the Clonipine. She said to be sure to call if Hannah has any dizziness to be sure her BP isn't dropping too much. Hopefully this will help some of her behavior issues and possibly reduce her seizures. That would be a welcomed side affect!!! We started the first dose tonight. They are titrating her very slowly. She will be on full dose (one pill am and one pill pm) in about a month. He thinks it's definitely worth a try to see if her quality of life improves any.
He said he talked with another Dr. Neuro (one who works only with surgery cases) about VNS for Hannah. Our Dr. Neuro and I and pretty much everyone else, knows that this other doc in NOT an advocate for the VNS. He does not like it. He said he doesn't think it will help Hannah. Our Dr. Neuro said but doing nothing won't help her either. We are running our of options and I am willing to try something! Yay Dr. Neuro!! The other doc gave him his blessing. It shouldn't be too long for insurance to approve it; then we will get an appointment with the neurosurgeon. I am praying this will be an answer. Some help to her. At the very least, reduction in seizures.

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!!

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....

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.

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....