Hannah is really having a hard time titrating with Vimpat. I am not sure what is going on. When we initially started it, she started having non stop seizures and seizure activity. Dr Neuro backed way down on the titration schedule and we re-introduced it much slower. At first, the second go around seemed to be fine, but now it's not. She has started seizing more again, behavior is ramped up and she is sleeping in school. I mean really sleeping. They have an area in the back of the room for her to lay down and she sleeps for a couple periods at a time. ugh. They are frustrated, I am frustrated , and I know Hannah is frustrated!!!
I have called the dr again. twice now... haven't heard back (also quite frustrating)... I don't know if we will keep trying with the vimpat. And, I have no idea what will be the next poison of choice. I am bringing up the vns to him. I really think it's time to give it a try. Maybe we can make it through puberty in one piece with it....
As hard as this is... I had a reality check this morning when I realized a child with epilepsy (and other medical issues) died last night. He had back to back to back seizures and then just quit breathing. He could not be revived. I ache for the family. He was only 6 yearrs old. Riley and his family were raising money for him to get a service dog from 4 Paws for Ability. I lift heart felt prayers to the Stacel family....
Wow. I can't believe it has been a month since I have blogged last. Time really does fly by!!
My baby girl is now an 11 year old young lady. She had a couple great birthday party's and was so happy with all the hoopla!!
She had a birthday slumber party... whew... 7 giggling girls!!!
The whole gang...
We had planned a face painter and balloon artist to come and entertain, but she cancelled the day of because her whole family had the flu... so i had to (quickly) come up with some ideas... I got tshirts and let everyone have at the paint!!! It was a lot of fun!
Hannah's masterpiece.... :)
The next week, we had a birthday party at my parents house. Nana gave her a very special necklace.
Cheerleader birthday cake!!!! oh yeah!
This was a military appreciation event we went to. I love this pic!!!
Seizures have been crazy. We had increased her Depakote one more time and it really wasn't helping her seizures. She was still wetting herself and having her night time jerks. So, Dr. Neuro decided to add Vimpat to her pill regime (now on Depakote, Klonipin, and Vimpat). They gave me the titration schedule which I started a few days later. I really dragged my feet. I LOATHE medications changes... additions... subtractions... whatever. It always sucks. So, we started the titration on a Saturday. By Monday, I could tell things were not going well. By Tuesday, she was pretty much seizing non stop. By Wednesday, she was still seizing and her behavior was through the roof. It was AWFUL. I had stopped the med and had my SOS call to the neuro office. They called back with a new titration schedule. We were going to stay on the med but start it again, much, much slower. She is SOOO sensitive to med changes. So far, so good.... She is increasing Vimpat every three days, slowly working up to therapeutic dose. She is still having seizures.
I have been revisiting the idea of the VNS... vagus nerve stimulator. Talking to parents whose kids have had the surgery, researching on the internet, dusting off the old epilepsy books again.... I am going to talk with Dr Neuro about it. (I haven't addressed it with the new doc)... I am interested to see what his take on it would be. Every single person I have talked to, seizure relief or not, has said it has improved their mood. Their kids are not early as moody after the surgery. hmmm... interesting. About 50% of them have had a huge decrease in seizures. I know it's not a cure. I know that. BUT, if it can give some relief, and help her mood... I am thinking that is a good thing!!! To be continued with this topic....
I am also getting all of Hannah's documentation together to go for a consult in Chicago with Dr. Laux. She is THE expert on Dravet Syndrome in this country. Even though Hannah does not have the gene mutation, Dr Neuro still thinks that Hannah has Dravet. So he really wants us to go visit her and get her opinion. They want a lot of documents.... I am working on gettting those together, and then they will schedule her appointment.
We are also working on getting her psychological testing done. All of her teachers really feel like she has had a lot of regression and isn't doing what she used to be doing. I don't know. I really think she is just having a lot more seizures that she had been. That will look like regression. We will see....
AND.... the arm. Hannah's arm is continuing to heal nicely. In January, she went from the long arm cast to a shorter cast. Then, in February, they felt it was healed enough to switched to a brace. It's nice because she can soak in the bathtub without anything on her arm!!! She hasn't done that since Thanksgiving Day!! In March, she is allowed to go without the brace; this makes mama VERY NERVOUS!!! She still has a rod in there, afterall!!!! The rod stays in until June. Her arm should be completely healed by then and the rod will come out. This will involve another surgery, but hopefully it goes much smoother than the last one....
Whew... that was quite an update.... I will try not to be absent as long next time!!!
I am having a hard time with her turning 11. How can that be possible??? I have really been thinking about the day she was born. We had a snow storm just like we had yesterday the day she was welcomed into this world. She got a great present already... NO SCHOOL TODAY!!
We are getting ready fof her party tonight. She is having 7 giggling girls over tonight. I have arranged to have a face painter and balloon artist to come. She is sooo excited!! I think it will be loads of fun.... I will be sure to post pics later!!!
We had a fabulous neuro appt yesterday... I will post more about that later...
WOW... It's been awhile!!! We had a fantastic Christmas. We were able to spend the day together, play with new toys and enjoy each other!!
Hannah's seizures continue to be fairly well controlled (knock on wood). I keep waiting for the "honeymoon period" to end. She hasn't had any tonic clonics or myoclonics in the last month. She has had a few absence and complex partials, but nothing like it was before the big increase in meds. We go back to see Dr. Neuro at the end of the month for a follow up.
I think Hannah holds the record for the number of casts for a broken arm!! She just got her NINTH cast today!!! Today was different though... Her arm has healed enough that she able to go into a cast BELOW her elbow!! (She has been in a long arm cast since Thanksgiving Day). She is tickled pink, but was having a lot of discomfort because it's been awhile since she straightened her arm! Her joints were screaming!!!
She will be in this cast for three weeks and then she will go into a brace. Hannah will have to wear the brace until June, when she goes back into surgery to have the rods taken out. But, at least it will be removable so she can shower...
She is counting the days.... soon she will be ELEVEN!!!!!!!!!!!! How is that even possible??????? I really don't know. ugh
Last Wednesday Hannah had surgery on her arm. What a time we had. Things didn't go completely like we had planned (but then again... when does it ever???)
We arrived at the hospital, same day surgery, at 11 am. Of course, she was fasting, and not happy at all. I will NEVER, NEVER, EVER again be "add on" status. ever..... It was one of the longest day of our lives. The surgeon was done with his afternoon surgery at 4 pm. Still waited... and waited... and waited some more....
At 6:30, Same Day Surgery was closing. We had to go somewhere. Dr. Ortho wanted us to stay in a "holding" area, so we were as close to the OR as we could be. As we learned, the surgeon was ready, the OR was ready, but there was no staff... How can they have THIRTY-TWO OR rooms and not enough staff?????? SOOOO frustrating. About 6 pm I requested them to give her fluids in her IV that she had placed in her arm, ALL DAY... Hannah was dehydrated. Her poor little eyes were sunken in.
FINALLY at 8:40 PM, they came in to take her to the OR. unbelievable.... truly.
Her surgery itself, went great. It took about two hours. He placed a pin (rod) in only one bone (the other one had soft bone and had actually started healing. (We had decided to put a long arm cast on her after surgery so she would have more protection). He felt the cast would be enough to help the smaller bone heal. I was very much surprised to see the rod goes from her pinky finger to her elbow. I had no idea it was going to be that long. So she will wear the cast for 6 weeks. Then she will wear a removable cast for 5 more months. In June or July, Dr Ortho will go back in to remove the pin... Then she will have physical therapy for 3 or so months. The way I figure, that will take us right back up to Thanksgiving!!!! Who knew this would be a year long process????
Post op was crazy... Hannah normally handles anesthesia well, as long as they don't use gas (which they didn't). She woke up too soon after surgery and was really having a rough time. She wasn't able to keep her O2 saturations up. They started her on her BI PAP and added in oxygen.
We finally got up to her room at 1:30 am. We were on a trach floor so the respiratory therapists(RT) were right there... We had a WONDERFUL RT!!!! Tera was sooo good to Hannah. There wasn't anything she wouldn't do for our girl!!! Thanks Tera, we appreciate you more than you will ever know!! Tera continued to wean her oxygen down through the night.
By 8 am the next morning, Hannah started swelling and turned very flushed in her face. Then she started itching. They called in the dr. He felt like she was having an allergic reaaction to something they gave her during surgery. We will never know what that was.... Then about 1 pm, she started to have "wet lungs" and wheezing. ugh Hannah is not a wheezer.... We started breathing treatments. We think she may have aspirated during surgery.
Late Thursday afternoon, Hannah seemed to turn the corner and started feeling better. We spent another night just to be sure her O2 sats were staying up. They did. 98% all night! So, we were able to go home late Friday morning. yay!!! It was quite the surgical experience.... She usually never has these issues with anesthesia. I think maybe she was in deeper sedation and the longer surgery caused some of the oxygen issues. still not sure. It was really scary though. (what scared me the most when Hannah woke up in recovery, the very first thing she said to me was... "MOM, I CAN'T SEE... I CAN'T SEE!!!!" WWWHHHAAAATTTT??????? Then she said, "MOM, I HAVE DOUBLE EYES, I HAVE DOUBLE EYES!!!!". Then I knew she was having double vision. whew. That'll scare the poop outta anyone!!!
She rested all weekend and is doing so well. It's weird to think that with that big ol rod in her arm she is virtually pain free! (she hurt so much the first 3 weeks...) It's finally stable. Her bones aren't moving all around anymore. Healing has begun!!!!
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....