We had our weekly appt. at the pediatrician a couple of weeks ago to check her BP and Blood Sugar and for the first time it showed up quite high. 114/70. It continued to be high for a few days so we be put her on another medication that will help keep it in check. We have started slowly decreasing the dose over the next 3 months so our Dr. is hoping that it will resolve as the amount decreases. In the meantime she is consistently putting on wieght. We are affectionately calling her our Budda Baby.
I can't take her anywhere without someone commenting on her adorable cheeks.
Keith and Dylan went to Wisconsin last week but unfortunately Marleigh and I had to cancell our trip. Our Dr. thought it would be a very bad idea to expose her to so many germs, especially in flu season. Keith and Dylan had a fantastic time visiting with Grandma Neumeyer and his cousins. More on this on the family blog.
The good news is Marleigh has not had any seizures since she started the treatment. YAY!
Tuesday, October 28, 2008
Sunday, October 26, 2008
ACTH Update
This photo is from our hospital visit just before we started the injections. I wanted you to have a before/after of what this medicine is doing to her weight.
Here she is week three. (photo coming soon)
Marleigh has been on the ACTH now for almost three weeks. She is doing great. We have been going to the pediatrician 2 times a week since she began treatment on October 2nd, to test her blood pressure and her blood sugar. Her system is handling the drug very well. Keith and I have a good system for administering the injection and even though she cries a little, it doesn't take much to cheer her back up.
We had an in office EEG on 10/23 (we like these because they only tape on the leads so it is not as uncomfortable for her and much easier to remove!) Here you can see Conrad and Andrea applying the leads, the whole process takes 15 minutes or so.
Marleigh doesn't love this process, but she sure handled it well this time.
The good news is her results show no infantile spasms, the bad news is her brain patterns have not completely normailized - but they have improved since the last test. These are the supplies for doing the EEG
Marleigh started physical therapy two weeks ago. We have an Occupational Therapist that comes to our home once a week to work with her and show me things I can do to help her develop her motor skills. We mostly do some stretching and tummy time. But she has given me information on infant massage and some resources to work with.
Here is a picture of Lindsey helping her stretch. She is behind on a few things, but she is doing well with holding onto things, bringing her hands together and getting her hand in her mouth.
My friend Katie came out to LA from Colorado for a visit. More on this visit will be on our family blog.
Here she is week three. (photo coming soon)
Marleigh has been on the ACTH now for almost three weeks. She is doing great. We have been going to the pediatrician 2 times a week since she began treatment on October 2nd, to test her blood pressure and her blood sugar. Her system is handling the drug very well. Keith and I have a good system for administering the injection and even though she cries a little, it doesn't take much to cheer her back up.
We had an in office EEG on 10/23 (we like these because they only tape on the leads so it is not as uncomfortable for her and much easier to remove!) Here you can see Conrad and Andrea applying the leads, the whole process takes 15 minutes or so.
Marleigh doesn't love this process, but she sure handled it well this time.
The good news is her results show no infantile spasms, the bad news is her brain patterns have not completely normailized - but they have improved since the last test. These are the supplies for doing the EEG
Marleigh started physical therapy two weeks ago. We have an Occupational Therapist that comes to our home once a week to work with her and show me things I can do to help her develop her motor skills. We mostly do some stretching and tummy time. But she has given me information on infant massage and some resources to work with.
Here is a picture of Lindsey helping her stretch. She is behind on a few things, but she is doing well with holding onto things, bringing her hands together and getting her hand in her mouth.
My friend Katie came out to LA from Colorado for a visit. More on this visit will be on our family blog.
Tuesday, October 14, 2008
ACTH for real
Her smile lights up a room!!
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Hi - sorry to be behind on my updates. Not sure where the last two weeks have gone.
Well, I think I told you that the seizures came back. We had an outpatient Telemetry (EEG w/ Video) for 4 hours on September 30th. The seizures started out pretty mild but continued to get worse each day so our Dr.upped her zonegran dose to 125mg a day and got us scheduled for an overnight hospital stay.
We started the ACTH treatment a few weeks ago, on October 2nd. They only kept us in the hospital overnight because they had to teach us how to do the injections and then monitor her closely to see if she had an alergic reaction or other problems. This drug has a lot of potential side-effects (see an earlier post). The main one is wieght gain and cronic irritability.
Things are going OK. Marleigh is doing well on the drug, her blood pressure and blood sugar are a little high but within allowable amounts. Keith and I have managed to do the injections everymorning - it is a team effort, with one of us holding her still while the other administers the shot in her leg. We alternate legs each day. At first Marleigh screamed, but now she takes it like a champ.
The day we checked into the hospital my brother, Brent just happened to be in town! I haven't seen him for more than a year. Usually we have a family reunion on July 4th in the UP but this year I gave birth on July 1st and his wife gave birth on August 13th. So needless to say, it was so wonderful to see him! He had to come to the hospital for dinner - but it was actually pretty good...one of the IN&OUT burger places is next door to the hospital. I love those burgers ;)
Anyway, we had a follow-up Dr. Apt. on Monday and it sounds like we'll be doing another outpatient EEG/Telemetry. This is because Dr. Kornblum (neurologist) needs to know how effective the ACTH is. Marleigh has been doing a strange breathing thing (kind of like when you can't catch your breath after you have been sobbing) only it happens all the time. The Dr. is concerned that it is a sign that her brain activity is still abnormal. After this test we'll know more about the plan for the next couple of months.
alt=""id="BLOGGER_PHOTO_ID_5257652303613182402" />Hi - sorry to be behind on my updates. Not sure where the last two weeks have gone.
Well, I think I told you that the seizures came back. We had an outpatient Telemetry (EEG w/ Video) for 4 hours on September 30th. The seizures started out pretty mild but continued to get worse each day so our Dr.upped her zonegran dose to 125mg a day and got us scheduled for an overnight hospital stay.
We started the ACTH treatment a few weeks ago, on October 2nd. They only kept us in the hospital overnight because they had to teach us how to do the injections and then monitor her closely to see if she had an alergic reaction or other problems. This drug has a lot of potential side-effects (see an earlier post). The main one is wieght gain and cronic irritability.
Things are going OK. Marleigh is doing well on the drug, her blood pressure and blood sugar are a little high but within allowable amounts. Keith and I have managed to do the injections everymorning - it is a team effort, with one of us holding her still while the other administers the shot in her leg. We alternate legs each day. At first Marleigh screamed, but now she takes it like a champ.
The day we checked into the hospital my brother, Brent just happened to be in town! I haven't seen him for more than a year. Usually we have a family reunion on July 4th in the UP but this year I gave birth on July 1st and his wife gave birth on August 13th. So needless to say, it was so wonderful to see him! He had to come to the hospital for dinner - but it was actually pretty good...one of the IN&OUT burger places is next door to the hospital. I love those burgers ;)
Anyway, we had a follow-up Dr. Apt. on Monday and it sounds like we'll be doing another outpatient EEG/Telemetry. This is because Dr. Kornblum (neurologist) needs to know how effective the ACTH is. Marleigh has been doing a strange breathing thing (kind of like when you can't catch your breath after you have been sobbing) only it happens all the time. The Dr. is concerned that it is a sign that her brain activity is still abnormal. After this test we'll know more about the plan for the next couple of months.
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