Thursday, April 11, 2013
medical updates
Since I know some of you are always wanting to find out what's going on with my kid's medical issues here is a quick update:
Mikayla- had an EMG which is a nerve-connectivity test done by inserting needles into the muscle and sending an electric signal to see if the muscles are getting the signals from the brain. Everything looks good there, meaning there isn't any nerve damage (except bi-lateral damage to her carple tunnel nerve which is probably what is making fine motor skills so delayed) so the next step is the test the muscle. We did that last week by taking a muscle biopsy (an orthopedic surgeon made a 2" incision in her thigh nearly to the bone and cut out a piece for testing) and are awaiting the results. They told us it would be a week-10 days for results so we will hopefully hear something any day. They are testing for degenerative muscle disease as well as mitochondrial disease and we will see if that gives us any more clues. She is recovered from her surgery now the proud owner of a narly scar on her left leg.
Carter- We read THE book on the ketogenic diet and the research Johns Hopkins has done regarding it and met with the dietician and nurse practitioner at PCMC that make up the Keto team there. They sent us home with some sample menus and a food preferences/diet log to fill out. Its a pretty hard-core diet so we not taking the decision lightly. In the mean time we have increased his medication to the maximum dosage and the neurologist is considering adding a 3rd medication to his regimen, something we aren't too keen on doing. So far he is adjusting to the medication well and tolerating with few side effects, in fact some days he's his old cheerful self. We also continue to take him to the chiropractor (originally every day, now every other) and that seems to corelate with his seizure activity. On days when he has held his previous adjustment well he has few to no seizures, on days when he is completely out of alignment he has more seizures. We can't yet tell if the seizures cause the misalignments (injury from falling and such) or if the misalignment causes the seizures. However because there does seem to be a connection we will continue to persue it. Carter has good days and bad days, but we are grateful that lately it seems more good than bad. He's had stitches twice and needed his rescue meds more than I am comfortable with but we are loving the 2-6 day stretches of seizure-free time we are having. At this point we have to hurry up and wait to see what the next step is going to be but we have set things in motion to continue to move forward.
As always, thank you so much for the prayers and positive energy you are sending our way. We know sometimes we can get a little myopic and self-centered but we really appreciate all the wonderful family and friends in our lives who are there to buoy us up and help in anyway they can--some days that is the only thing that keeps us sane. We love all of you! God bless!
Mikayla- had an EMG which is a nerve-connectivity test done by inserting needles into the muscle and sending an electric signal to see if the muscles are getting the signals from the brain. Everything looks good there, meaning there isn't any nerve damage (except bi-lateral damage to her carple tunnel nerve which is probably what is making fine motor skills so delayed) so the next step is the test the muscle. We did that last week by taking a muscle biopsy (an orthopedic surgeon made a 2" incision in her thigh nearly to the bone and cut out a piece for testing) and are awaiting the results. They told us it would be a week-10 days for results so we will hopefully hear something any day. They are testing for degenerative muscle disease as well as mitochondrial disease and we will see if that gives us any more clues. She is recovered from her surgery now the proud owner of a narly scar on her left leg.
Carter- We read THE book on the ketogenic diet and the research Johns Hopkins has done regarding it and met with the dietician and nurse practitioner at PCMC that make up the Keto team there. They sent us home with some sample menus and a food preferences/diet log to fill out. Its a pretty hard-core diet so we not taking the decision lightly. In the mean time we have increased his medication to the maximum dosage and the neurologist is considering adding a 3rd medication to his regimen, something we aren't too keen on doing. So far he is adjusting to the medication well and tolerating with few side effects, in fact some days he's his old cheerful self. We also continue to take him to the chiropractor (originally every day, now every other) and that seems to corelate with his seizure activity. On days when he has held his previous adjustment well he has few to no seizures, on days when he is completely out of alignment he has more seizures. We can't yet tell if the seizures cause the misalignments (injury from falling and such) or if the misalignment causes the seizures. However because there does seem to be a connection we will continue to persue it. Carter has good days and bad days, but we are grateful that lately it seems more good than bad. He's had stitches twice and needed his rescue meds more than I am comfortable with but we are loving the 2-6 day stretches of seizure-free time we are having. At this point we have to hurry up and wait to see what the next step is going to be but we have set things in motion to continue to move forward.
As always, thank you so much for the prayers and positive energy you are sending our way. We know sometimes we can get a little myopic and self-centered but we really appreciate all the wonderful family and friends in our lives who are there to buoy us up and help in anyway they can--some days that is the only thing that keeps us sane. We love all of you! God bless!
Spring Break
We had a really great Spring Break this year. The weather was GORGEOUS the whole time and Carter's seizures even decided to cooperate--in fact we went 6 days seizure free during spring break which meant we could really enjoy our time together. Unfortunately Chris still had to work, although he got one afternoon off to join us at the planetarium.
We went to the dinosaur museum and spent time looking at the visiting exhibit about sound waves. Very interesting.
Tuesday Mikayla had a muscle biopsy which turned out to be a little bigger of a deal than I was lead to believe it would be. She was a great trooper but it was a true surgery. They took a piece of muscle from her thigh to test for some different muscle diseases to see if there is anything else we can do to help her get stronger. She is a stubborn girl and refused to take her paid meds but at least she didn't complain about pain. She spent the next couple of days on the couch collecting get well cards and flowers (thank you Finn!) Alyssa read books to her and played games with her sister that they could do sitting down.
Other spring break activities included going to the planetarium, the gateway, the park and hanging out with friends. We also got to have a sleep over and grandma and grandpa's house and see cousins for General Conference. It was a great week!
We went to the dinosaur museum and spent time looking at the visiting exhibit about sound waves. Very interesting.
Tuesday Mikayla had a muscle biopsy which turned out to be a little bigger of a deal than I was lead to believe it would be. She was a great trooper but it was a true surgery. They took a piece of muscle from her thigh to test for some different muscle diseases to see if there is anything else we can do to help her get stronger. She is a stubborn girl and refused to take her paid meds but at least she didn't complain about pain. She spent the next couple of days on the couch collecting get well cards and flowers (thank you Finn!) Alyssa read books to her and played games with her sister that they could do sitting down.
Other spring break activities included going to the planetarium, the gateway, the park and hanging out with friends. We also got to have a sleep over and grandma and grandpa's house and see cousins for General Conference. It was a great week!
Carter is becoming one tough guy!
My sweet little guy is the first of my children to need stitches, and he did it twice in less than two weeks. The first time was due to a drop attack that hit his eye at the breakfast table. He just needed one little stitch just under his eye and he was amazing! They didn't even need to numb him up. Unfortunately the second set of stitches was a bit more traumatic. While at the dentist's office waiting for his sisters to get their teeth cleaned he had a drop attack that caused him to fall against the wooden train table in the waiting room and sent his bottom teeth through his bottom lip. After looking at it the dentist sent us to urgent care to have it stitched up (he only does stitches on the inside of the mouth) who then sent us to UVRMC emergency room so that he could be sedated for the procedure. Once at the ER they decided he needed a CT to make sure he hadn't fractured any of this facial bones, and then he kept waking from the sedation. It ended up being a LONG night. Luckily no serious damage was done (he looked worse than it was) and he got to eat a lot of popsicles to help the swelling go down. Poor Boy! He is learning to be tough, though.
Alyssa's Birthday!
I can't believe my beautiful girl is 7!!!! When did that happen? We had a really great weekend celebrating our Aly-bug (and yes, I do mean weekend). Here are some of the highlights:
For her actual birthday we had her great grandparents come for dinner along with Mike and Mindy and their brood. We had a turkey feast and then showered her with presents...it gets embarassing with the huge pile but what am I going to do? She has a lot of adoring fans.
Lastly, she wanted to go to the planetarium so we did that a week later during spring break. Overall an outstanding birthday for an out-of-this-world girl! We sure do love her!
Wednesday, March 13, 2013
A few reprieves...
I've almost posted a couple of times recently but I've been nervous to share changes when I don't know if they will be permanent, and proven by the ups and downs of the last week.
Last week, Thursday through Saturday were really good days. Carter had very few seizures and we were hopeful the medication was finally taking effect. Then Sunday came and down he went, over and over. The poor guy just couldn't seem to stay on his feet with the frequency of the drop attacks. After 3 days of significant improvement it was a little hard to watch.
We were a little nervous for Chris to go to San Diego Monday but I knew it was important so I sent him anyway. And then we were blessed. Monday evening wasn't going so well and I was so glad to get Carter to bed so the seizures would stop. And then he woke up Tuesday and was fine. Not a single observable seizure all day!!! What a gift! Rather than get my hopes up I chose to just enjoy it, and enjoy it we did. So I was pleasantly surprised to wake up this morning to a continuingly seizure free boy! We had a great day, and after our daily chiropractic adjustment we spent a bunch of time at the park and outside in the beautiful weather. We were 43 hours seizures free when he suddenly collapsed after his nap, hitting his chin on the window sill, and seizing for 30 seconds on the ground. The streak was broken. But you know what? We had a great couple of days and we'll just look forward to more of those rather than dwell on the not-so-great days.
What's next? We see the neurologist again on Friday and we'll see if they have any more ideas of a diagnosis/prognosis. We have also started studying the ketogenic diet at the urging of the neurologist as some children with refractory epilepsy (meaning they are unable to control the seizures through medication) respond very well and can become seizure free on the diet. Its extreme and requires complete commitment and it is very difficult to follow, but if the benefits outweigh the cost than it is something we should at least consider.
While we're counting blessings we are grateful that Christopher's trip to San Diego has been incredibly good professionally and we've had friends help us out while he's been gone. Not to mention the wonderful Janie who helped me sort and de-junk the playroom while Carter was feeling well so he can now safely play down there. And lastly, how gorgeous has the weather been? Winter, we're done with you, welcome spring!
Last week, Thursday through Saturday were really good days. Carter had very few seizures and we were hopeful the medication was finally taking effect. Then Sunday came and down he went, over and over. The poor guy just couldn't seem to stay on his feet with the frequency of the drop attacks. After 3 days of significant improvement it was a little hard to watch.
We were a little nervous for Chris to go to San Diego Monday but I knew it was important so I sent him anyway. And then we were blessed. Monday evening wasn't going so well and I was so glad to get Carter to bed so the seizures would stop. And then he woke up Tuesday and was fine. Not a single observable seizure all day!!! What a gift! Rather than get my hopes up I chose to just enjoy it, and enjoy it we did. So I was pleasantly surprised to wake up this morning to a continuingly seizure free boy! We had a great day, and after our daily chiropractic adjustment we spent a bunch of time at the park and outside in the beautiful weather. We were 43 hours seizures free when he suddenly collapsed after his nap, hitting his chin on the window sill, and seizing for 30 seconds on the ground. The streak was broken. But you know what? We had a great couple of days and we'll just look forward to more of those rather than dwell on the not-so-great days.
What's next? We see the neurologist again on Friday and we'll see if they have any more ideas of a diagnosis/prognosis. We have also started studying the ketogenic diet at the urging of the neurologist as some children with refractory epilepsy (meaning they are unable to control the seizures through medication) respond very well and can become seizure free on the diet. Its extreme and requires complete commitment and it is very difficult to follow, but if the benefits outweigh the cost than it is something we should at least consider.
While we're counting blessings we are grateful that Christopher's trip to San Diego has been incredibly good professionally and we've had friends help us out while he's been gone. Not to mention the wonderful Janie who helped me sort and de-junk the playroom while Carter was feeling well so he can now safely play down there. And lastly, how gorgeous has the weather been? Winter, we're done with you, welcome spring!
Tuesday, February 26, 2013
A very long day with the docs
Today was a very long day at PCMC. Mikayla had an EMG which is a needle test that gauges her nerves and muscles. She was a trooper! They didn't have to sedate her and then she just looked at her book and didn't make a sound as they were sticking electrodes and needles into her muscles-A-MAZE-ING! The doctor was able to get a little more information and they have scheduled a muscle biopsy for a couple of weeks from now. We have hope that his new neuro-muscular specialist will be able to give us answers where so many have failed before, although we mostly want to make sure that there isn't anything degenerating going on.
Carter had his follow up with his neurologist who tweaked his medication and is still hopeful that we can control the seizures with medication. It was working so nicely for almost a week there! (dang that stomach flu that set us back 2 weeks!) He's still having several little seizures/drop attacks an hour and they get worse when he's tired but he loves wearing his helmet which helps set mom's mind at ease and mostly we just bribe him to stay on the couch and watch tv so he doesn't get hurt... The doctor has a few ideas for a diagnosis but its too early to tell and I don't want to name them and have you all google them and get scared so you'll just have to wait to find out.
For now know that we love you and appreciate your concern.
Carter had his follow up with his neurologist who tweaked his medication and is still hopeful that we can control the seizures with medication. It was working so nicely for almost a week there! (dang that stomach flu that set us back 2 weeks!) He's still having several little seizures/drop attacks an hour and they get worse when he's tired but he loves wearing his helmet which helps set mom's mind at ease and mostly we just bribe him to stay on the couch and watch tv so he doesn't get hurt... The doctor has a few ideas for a diagnosis but its too early to tell and I don't want to name them and have you all google them and get scared so you'll just have to wait to find out.
For now know that we love you and appreciate your concern.
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