Tuesday, June 12, 2012
Saturday, June 9, 2012
Better
After increasing Keppra and doubling her morning dose of B6 Madalyn has
had two great days! Today we had a friend over for a playdate! She even worked a puzzle and helped me make a grocery list by writing words phonetically. I'm very hopeful I have my Madalyn back!
Friday, June 8, 2012
Thursday, June 7, 2012
Neurologist appointment
Madalyn and Josephine had an appointment with Dr. Parker this morning. She spent a lot of time with us. She showed me the images of Josephine's MRI and answered all of my questions related to Josephine's MRI and Madalyn's seizure medication options.
Josephine: I was so excited for Dr. Parker to see the lively, spunky, and sweet child Josephine has become since she first saw her 2 months ago!
I remember the day she called me over a year ago after reviewing "Josephine's file". I was in the Flowood library, storytime was ending, and the UMC call came up on my phone. I darted for a quiet corner, knowing everyone in the library could here me ask those questions that just don't feel right.....like what are the chances the child will be cognitively affected, chances of seizures, do you think this child has any greater risks than any other child with Hemiplegia. Do you think the child will be able to talk. These questions don't feel right because regardless of the answers, this is a real child, not just a file.....but nevertheless, the questions had to be asked.... My heart was pounding because I knew I wanted her to say YES to this child that my heart had already said YES to....and she did:)
So, returning to Dr. Parker's office with a child that is now saying 30+ words, and screams Barney and Mickey whenever she sees them was so rewarding! She showed me the MRI and referred to the stroke as very large. To my untrained eye, her left hemisphere looked huge compared to her right. It seemed to take up 2/3 of her brain. The middle of her affected hemisphere was a large dark area of fluid filled emptiness. Above and below it was a small amount of brain.....which is where her leg control is, which is why her leg is only mildly affected. Josephine's speech should be controlled by the area that is now only fluid, so it is likely that her speech is now being handled by her right hemisphere. Time will tell if she has speech issues, but so far, she is doing great in that area!. Dr. Parker said she's glad children don't read their MRIs......they aren't limited by them. She did say Josephine's brain was better able to adapt to her injury than some children. Thank you God!
She is making a referral to a hemotologist to make sure she does not have any clotting issues that could have caused the stroke. We will skip the other test because it exposes her to radiation and anesthesia, and will not change our treatment.
Madalyn: Madalyn was quiet during the appointment. She was too shy to answer Dr. Parker's questions...unusual...but these days, you never know:( We talked about her 24 hour EEG and she did say she had a lot of spiking. She answered my questions related to comparing her 3 EEGs...basically her EEG at age 2 showed spiking but that was considered normal because of her age. Her next two EEGs showed simliar results, but appears worse during the 24 hour EEG. However, that is likely because she had longer to see a variety of the spiking.
So, here is the plan. Go up further on Keppra. Though the PDR lists us at the top level for her weight, it has been shown and is used safely at higher doses. We will increase B6 which helps with some of the irritability side affects. We will try this for 2 more weeks. Then, if hyperactivty, saddness, and attention are not improved (like it was on Lamictal) we will try adding an ADHD medicine. We will watch closely to be sure the stimulant does not cause Madalyn's seizure thershold to fall.
If after about 4 weeks that does not work, we will look into Depakote OR Trileptal, to be used as a single seizure medication. Both of these are not considered as "safe" as Keppra, so we would really like Keppra to work.
I will continue to call the nurse weekly to manage Madalyn's medications.
We return in 6 months for an appointment during Christmas holidays:)
Josephine: I was so excited for Dr. Parker to see the lively, spunky, and sweet child Josephine has become since she first saw her 2 months ago!
I remember the day she called me over a year ago after reviewing "Josephine's file". I was in the Flowood library, storytime was ending, and the UMC call came up on my phone. I darted for a quiet corner, knowing everyone in the library could here me ask those questions that just don't feel right.....like what are the chances the child will be cognitively affected, chances of seizures, do you think this child has any greater risks than any other child with Hemiplegia. Do you think the child will be able to talk. These questions don't feel right because regardless of the answers, this is a real child, not just a file.....but nevertheless, the questions had to be asked.... My heart was pounding because I knew I wanted her to say YES to this child that my heart had already said YES to....and she did:)
So, returning to Dr. Parker's office with a child that is now saying 30+ words, and screams Barney and Mickey whenever she sees them was so rewarding! She showed me the MRI and referred to the stroke as very large. To my untrained eye, her left hemisphere looked huge compared to her right. It seemed to take up 2/3 of her brain. The middle of her affected hemisphere was a large dark area of fluid filled emptiness. Above and below it was a small amount of brain.....which is where her leg control is, which is why her leg is only mildly affected. Josephine's speech should be controlled by the area that is now only fluid, so it is likely that her speech is now being handled by her right hemisphere. Time will tell if she has speech issues, but so far, she is doing great in that area!. Dr. Parker said she's glad children don't read their MRIs......they aren't limited by them. She did say Josephine's brain was better able to adapt to her injury than some children. Thank you God!
She is making a referral to a hemotologist to make sure she does not have any clotting issues that could have caused the stroke. We will skip the other test because it exposes her to radiation and anesthesia, and will not change our treatment.
Madalyn: Madalyn was quiet during the appointment. She was too shy to answer Dr. Parker's questions...unusual...but these days, you never know:( We talked about her 24 hour EEG and she did say she had a lot of spiking. She answered my questions related to comparing her 3 EEGs...basically her EEG at age 2 showed spiking but that was considered normal because of her age. Her next two EEGs showed simliar results, but appears worse during the 24 hour EEG. However, that is likely because she had longer to see a variety of the spiking.
So, here is the plan. Go up further on Keppra. Though the PDR lists us at the top level for her weight, it has been shown and is used safely at higher doses. We will increase B6 which helps with some of the irritability side affects. We will try this for 2 more weeks. Then, if hyperactivty, saddness, and attention are not improved (like it was on Lamictal) we will try adding an ADHD medicine. We will watch closely to be sure the stimulant does not cause Madalyn's seizure thershold to fall.
If after about 4 weeks that does not work, we will look into Depakote OR Trileptal, to be used as a single seizure medication. Both of these are not considered as "safe" as Keppra, so we would really like Keppra to work.
I will continue to call the nurse weekly to manage Madalyn's medications.
We return in 6 months for an appointment during Christmas holidays:)
Wednesday, June 6, 2012
Sunday, June 3, 2012
Josephine's great day at therapy
Josephine has begun to trust Kristen, our Occupational Therapist. And now that she is accepting her, she is willing to work for her, which is great news!
I first met Kristen when she was a student OT and I hired her to supplement Madalyn's weekly therapy when Madalyn was still a baby! Now Madalyn and Josephine see her weekly at Beyond Play, and we love her! Knowing how great Madalyn's therapists and doctors are was one of the driving factors to bring home a second child, this time knowing she had survived a stroke. And every day I am so thankful for our doctors and therapists, and to God for leading me to this sweet child, Josephine.
Missing Lamictal, not liking Keppra yet:(
And then she had the allergic reaction rash to the Lamictal and we had to stop it. Today she tried to read this book she wrote just two months ago and the letters don't form words in her brain anymore.
Like all parents, there have been a few moments that break my heart...like the moment Dr. Denney wrote hemiplegia for the first time on our checkout sheet, or the time the radiologist wrote the report on her first MRI and sat in front of us and said that word, "stroke". Then there was the first time I was racing to the ER as her eyes darted to the side and she was unresponsive, and my head was screaming...."no no, we didn't want her to have seizures". And today, when I watched her try to read something she knew she could read a couple of months ago. I just want to fix it all for her, but I know I can't. I know this too will pass, and we will find another seizure medicine that works. I just look forward to the day I look back, and this is in the past.
Subscribe to:
Posts (Atom)