I decided to play dumb and pretend that I had never heard the EEG tech tell us it would be three business days before we got results. I called the neurology clinic today and left a message for the nurses asking if the results from Lizzie's EEG were in yet.
Several hours later, Dr. K himself called me. The first thing he asked was whether we were noticing any seizures, and I told him no. He said that was good, and then said that he had very good news--that Lizzie did not show any seizure activity on the EEG on Monday!
He did say that the EEG showed some slowing of her brain waves on the right side and that sometimes that's due to a structural abnormality, although he pointed out that her MRI didn't show any abnormalities. Basically he just indicated that they would keep an eye on that to see if further testing was needed, but he didn't seem terribly concerned about it.
Dr. K will draw blood from Lizzie at her next appointment in order to do a genetic test for a very rare type of epilepsy that is influenced by Vitamin B6. He also said that they are still waiting to get the results back for the genetic test for Dravet syndrome and they will let us know when that comes in.
The doctor said to keep doing what we're doing with the Keppra, the B6, and the folinic acid, and we don't need to take Lizzie back to see him until January. He told us to call sooner if she starts having more seizures again.
Obviously we're very happy that the news today was good! We will continue with the medicines she's on, and we will continue with the prayers, because they're definitely helping! Many, many thanks to everyone for your support and prayers. We'll keep you posted!
Wednesday, October 19, 2011
Monday, October 17, 2011
Long day
We got Lizzie up at 4 AM in order to sleep-deprive her for her 7:30 EEG. They want the patient sleep-deprived for a couple of reasons. First, because lack of sleep stresses a person, and when someone is stressed, they're more likely to have seizures. Second, they like to get brain waves both when the person is awake and asleep; if the patient is sleep-deprived they'll hopefully fall asleep while on the EEG.
Lizzie did fine for the first hour and a half. We talked to her and played a Baby Einstein video, thinking maybe the music would help. By the time we were approaching two hours awake, she was definitely tired and ready to sleep. We used a cool wet washcloth to keep her awake for a while, which of course she wasn't happy about. Finally I took her pajamas off and carried her around in her diaper. Poor baby was very unhappy; she just wanted to fall asleep. When it was time to go we got her in the carseat and she tried to go to sleep again. I rode in the backseat with her so I could keep her awake. I used the washcloth some more, but eventually even that stopped working. I took off her socks and tickled her feet and Tom opened the car windows to let the cold outside air in. It was a constant battle to try to keep her awake all the way downtown. She was so fussy!
When we got there, the EEG tech decided to use a paste to attach the electrodes to Lizzie's head instead of the nasty "super glue" stuff they used the last two times. It's not really super glue, but it smells awful and it's a really strong adhesive. It has to be removed at the end of the EEG with an equally foul-smelling solution, and it still leaves bits of dried glue in her hair for a long time afterward. The tech told us that they're supposed to use the glue for patients under 2 because those ages move around a lot more and the electrodes have a much higher chance of getting knocked away from where they're originally placed. However, she said she would give the paste a try with Lizzie this time, for which we were grateful. The tech got Lizzie all hooked up and started the EEG. After a couple of minutes she said it was okay to let Lizzie fall asleep. We let her sleep about 15 minutes, and then we woke her up and they flashed strobe lights at her. Then they recorded about five more minutes of awake time, and we were done. Removal of the electrodes was MUCH faster and simpler this time around without the glue.
The tech said it would probably be three business days before we heard anything from Dr. K about the results, so now we just wait for Thursday. The waiting is hard.
Lizzie did fine for the first hour and a half. We talked to her and played a Baby Einstein video, thinking maybe the music would help. By the time we were approaching two hours awake, she was definitely tired and ready to sleep. We used a cool wet washcloth to keep her awake for a while, which of course she wasn't happy about. Finally I took her pajamas off and carried her around in her diaper. Poor baby was very unhappy; she just wanted to fall asleep. When it was time to go we got her in the carseat and she tried to go to sleep again. I rode in the backseat with her so I could keep her awake. I used the washcloth some more, but eventually even that stopped working. I took off her socks and tickled her feet and Tom opened the car windows to let the cold outside air in. It was a constant battle to try to keep her awake all the way downtown. She was so fussy!
When we got there, the EEG tech decided to use a paste to attach the electrodes to Lizzie's head instead of the nasty "super glue" stuff they used the last two times. It's not really super glue, but it smells awful and it's a really strong adhesive. It has to be removed at the end of the EEG with an equally foul-smelling solution, and it still leaves bits of dried glue in her hair for a long time afterward. The tech told us that they're supposed to use the glue for patients under 2 because those ages move around a lot more and the electrodes have a much higher chance of getting knocked away from where they're originally placed. However, she said she would give the paste a try with Lizzie this time, for which we were grateful. The tech got Lizzie all hooked up and started the EEG. After a couple of minutes she said it was okay to let Lizzie fall asleep. We let her sleep about 15 minutes, and then we woke her up and they flashed strobe lights at her. Then they recorded about five more minutes of awake time, and we were done. Removal of the electrodes was MUCH faster and simpler this time around without the glue.
The tech said it would probably be three business days before we heard anything from Dr. K about the results, so now we just wait for Thursday. The waiting is hard.
Thursday, October 13, 2011
Nutrition
Lizzie has been slow to gain weight since she was born. I've been nursing her when I'm with her and pumping at work so I can leave bottles of breastmilk for her when I'm not home. She has a good appetite, but for whatever reason she's not putting on weight very quickly. When she was in the hospital, the neurologist attributed the slow gain to the fact that she'd probably been having small, unnoticeable seizures for a long time.
We had an appointment on Tuesday with Nutrition at Children's Mercy. We met with a registered dietitian, who told us that they want Lizzie to be gaining 19-24 grams a day. (Her pattern so far has been to gain about 13 grams a day.) So the plan to try to get her to put on a little more weight is that we will add a teaspoon and a half of formula to the bottles of breastmilk that she gets while I'm at work--basically that just increases the calorie content of the milk a bit. When I'm at home and feeding her myself, we don't have to give her anything extra. We'll meet with the dietitian again right before Thanksgiving to see what kind of progress Lizzie is making.
Apparently I'm making skim milk instead of whole. :) Seriously though, I've nursed all four of the girls now, and all four were a little slow to put on weight the first few weeks, but then after that the older three did fine. I wish we didn't have to give Lizzie the extra formula, but obviously she needs it. I want to do what's best for her.
Lizzie still seems to us to be doing well. Last night she was laughing when Tom tickled her. She's very alert and likes to watch everything going on around her. She especially likes to watch her big sisters, and she follows what the dog and the cat are doing. We will continue to pray for good results on her EEG coming up on Monday!
We had an appointment on Tuesday with Nutrition at Children's Mercy. We met with a registered dietitian, who told us that they want Lizzie to be gaining 19-24 grams a day. (Her pattern so far has been to gain about 13 grams a day.) So the plan to try to get her to put on a little more weight is that we will add a teaspoon and a half of formula to the bottles of breastmilk that she gets while I'm at work--basically that just increases the calorie content of the milk a bit. When I'm at home and feeding her myself, we don't have to give her anything extra. We'll meet with the dietitian again right before Thanksgiving to see what kind of progress Lizzie is making.
Apparently I'm making skim milk instead of whole. :) Seriously though, I've nursed all four of the girls now, and all four were a little slow to put on weight the first few weeks, but then after that the older three did fine. I wish we didn't have to give Lizzie the extra formula, but obviously she needs it. I want to do what's best for her.
Lizzie still seems to us to be doing well. Last night she was laughing when Tom tickled her. She's very alert and likes to watch everything going on around her. She especially likes to watch her big sisters, and she follows what the dog and the cat are doing. We will continue to pray for good results on her EEG coming up on Monday!
Saturday, October 8, 2011
Update on doctor visits
This has been a busy week for doctor's appointments! Tuesday the 4th we saw the gastroenterologist because, since birth, Lizzie has been gaining weight very slowly. Our pediatrician referred us to the GI a while back, before she was admitted to the hospital. The neurologist at Children's Mercy thought it was likely that she's been having seizures for quite some time now; if she was burning calories having low-level seizures, it would have an effect on her weight. However, we decided to go ahead and keep the GI appointment just to rule out anything else. We didn't learn much that we didn't already know; basically the GI doc set up a meeting with Nutrition for us and said we'd wait and see what Lizzie's neurologist said later in the week.
Thursday the 6th we had Lizzie's 4-month checkup with her pediatrician and an appointment with the epilepsy clinic at Children's Mercy. At the pediatrician appointment, the doctor noticed a "click" in Lizzie's left hip when she was doing her exam. She said they would need an ultrasound to check it out. She tried to set up an appointment for later Thursday when we would already be downtown at Children's Mercy, but no luck. They tried Children's Mercy South and got us an appointment there for midafternoon.
Off we went to the epilepsy clinic. Lizzie was scheduled to see her doctor there, Dr. K. He will be her doctor from now on, but he was not someone we had met when she was in the hospital. He came in and discussed several things with us, as follows:
Bad news: Dr. K had looked at Lizzie's EEGs from when she was hospitalized and said that they didn't look good. On the second one, in particular, he said she wasn't even showing continuous brain activity. I asked what that meant, and he said that was consistent with very severe brain abnormalities and high degree of developmental delays. He said it looked more like the EEG of a premature infant instead of a three-and-a-half-month-old infant.
Good news: All of Lizzie's test results have come back normal. They have tested her blood and spinal fluid and nothing is out of the ordinary. In her genetic tests, they looked for deletions or duplications of any genes, which they did not find. This leads us to...
Bad news: We still don't have a reason for Lizzie's condition. Since all her tests were normal, nobody knows why she's having seizures. This is frustrating, to say the least.
Good news: We told Dr. K that Lizzie has not had any major seizures for a while now. She seems to be doing fine developmentally, as far as we can tell. She smiles and laughs; she coos; she's trying to roll over (and getting pretty close to doing it); she follows us with her eyes and turns her head to track us. Dr. K said that, while all of that is good, at four months old it's more difficult to notice developmental delays because infants don't do all that much at that age. Then he examined Lizzie and he did agree that she seems to be doing pretty well. He said that she has good muscle tone and seemed surprised that she did not look like her EEG suggested she should look. He was expecting a lethargic little baby just laying there, but she kicked and yelled and was quite active. Because she was mad at him while he was doing the exam, we didn't get to show him how she smiles or tracks us, but he took our word for it.
So this is the plan from here. . . Dr. K ordered another EEG, which will be on the 17th. If it looks much better than the ones she had while she was in the hospital, he will order a genetic test to check to see if the Vitamin B6 is the reason for the improvement. If it does not look better, he will want to see her more frequently. He also wrote a referral for Lizzie to get physical and occupational therapy. He said right now PT might not do much with her because her muscle tone is good, but he wanted her to go ahead and get started with it. Also, he increased her dose of Keppra slightly and continued her on the B6 and folinic acid. Lizzie will see someone from the Nutrition department on the 11th to see if there's anything else we can be doing to help her gain weight.
Then we left and went to Children's Mercy South for the ultrasound appointment on Lizzie's hip. She was a perfect angel for the ultrasound; she just laid on her back and looked up at the mobile on the ceiling the whole time. They did both hips and sent the records over to the pediatrician's office. Late in the afternoon they called and said that everything looked normal with her hips and they would just keep an eye on it in the future.
So we're relieved that there are no problems with Lizzie's hip joints. We're also glad she's doing so much better than Dr. K expected her to be doing. It's going to be hard to wait another 10 days for the EEG and then a few more after that for the results, but there's not much else we can do. We are so grateful for all the prayers you have been saying for Lizzie, and we humbly ask that you please continue praying--obviously it is working!
Thursday the 6th we had Lizzie's 4-month checkup with her pediatrician and an appointment with the epilepsy clinic at Children's Mercy. At the pediatrician appointment, the doctor noticed a "click" in Lizzie's left hip when she was doing her exam. She said they would need an ultrasound to check it out. She tried to set up an appointment for later Thursday when we would already be downtown at Children's Mercy, but no luck. They tried Children's Mercy South and got us an appointment there for midafternoon.
Off we went to the epilepsy clinic. Lizzie was scheduled to see her doctor there, Dr. K. He will be her doctor from now on, but he was not someone we had met when she was in the hospital. He came in and discussed several things with us, as follows:
Bad news: Dr. K had looked at Lizzie's EEGs from when she was hospitalized and said that they didn't look good. On the second one, in particular, he said she wasn't even showing continuous brain activity. I asked what that meant, and he said that was consistent with very severe brain abnormalities and high degree of developmental delays. He said it looked more like the EEG of a premature infant instead of a three-and-a-half-month-old infant.
Good news: All of Lizzie's test results have come back normal. They have tested her blood and spinal fluid and nothing is out of the ordinary. In her genetic tests, they looked for deletions or duplications of any genes, which they did not find. This leads us to...
Bad news: We still don't have a reason for Lizzie's condition. Since all her tests were normal, nobody knows why she's having seizures. This is frustrating, to say the least.
Good news: We told Dr. K that Lizzie has not had any major seizures for a while now. She seems to be doing fine developmentally, as far as we can tell. She smiles and laughs; she coos; she's trying to roll over (and getting pretty close to doing it); she follows us with her eyes and turns her head to track us. Dr. K said that, while all of that is good, at four months old it's more difficult to notice developmental delays because infants don't do all that much at that age. Then he examined Lizzie and he did agree that she seems to be doing pretty well. He said that she has good muscle tone and seemed surprised that she did not look like her EEG suggested she should look. He was expecting a lethargic little baby just laying there, but she kicked and yelled and was quite active. Because she was mad at him while he was doing the exam, we didn't get to show him how she smiles or tracks us, but he took our word for it.
So this is the plan from here. . . Dr. K ordered another EEG, which will be on the 17th. If it looks much better than the ones she had while she was in the hospital, he will order a genetic test to check to see if the Vitamin B6 is the reason for the improvement. If it does not look better, he will want to see her more frequently. He also wrote a referral for Lizzie to get physical and occupational therapy. He said right now PT might not do much with her because her muscle tone is good, but he wanted her to go ahead and get started with it. Also, he increased her dose of Keppra slightly and continued her on the B6 and folinic acid. Lizzie will see someone from the Nutrition department on the 11th to see if there's anything else we can be doing to help her gain weight.
Then we left and went to Children's Mercy South for the ultrasound appointment on Lizzie's hip. She was a perfect angel for the ultrasound; she just laid on her back and looked up at the mobile on the ceiling the whole time. They did both hips and sent the records over to the pediatrician's office. Late in the afternoon they called and said that everything looked normal with her hips and they would just keep an eye on it in the future.
So we're relieved that there are no problems with Lizzie's hip joints. We're also glad she's doing so much better than Dr. K expected her to be doing. It's going to be hard to wait another 10 days for the EEG and then a few more after that for the results, but there's not much else we can do. We are so grateful for all the prayers you have been saying for Lizzie, and we humbly ask that you please continue praying--obviously it is working!
Sunday, October 2, 2011
A good weekend
This has been a nice weekend. Lizzie has been seizure-free, as far as we can tell. Tom's parents got here Friday night. Saturday morning Tom's parents, my mom, my sister, and Tom and I and the girls all walked in the Alzheimer's Walk in memory of my grandma and Tom's grandpa. Later Saturday Tom's sister and family got here. Sunday morning Lizzie was baptized at church. My dad got to do the baptism. It was a good weekend for visiting and enjoying family.
Subscribe to:
Posts (Atom)