This is Raquel's last week of being on Depakote. Actually, Wednesday night will be her last partial dose so come Thursday, she will be solely on Keppra. I am hoping and praying that she will do much better on this medication.
I've already noticed some changes since the weaning process began. She's definitely not as groggy and is a bit more stable on her feet. She still has these "episodes", but they aren't as dramatic as before, although I am still troubled by her having them at all. She doesn't seem nearly as anxious, but definitely has her moments. Once we began the weaning process, she started waking up at 3am (again) and her sleeping patterns got off a bit. But now we have a soft light in her room at night - she previously liked it very dark - and the light seems to help. Old behavior problems also returned, which the neurologist warned me about. Depakote was supposed to be helping tame the bad behaviors, and once we lessened the dose, the hitting, scratching, biting, head butting returned. Combining that with the sleep issues, the last week or so hasn't been a bed of roses. But now, for the most part, she is back to her regular sleeping routine and her behaviors are managable - unless she's tired, hungry, or just in a bad mood. :-)
I'm also noticing more functional play. And she wants to participate in playing instead of just watching others do so. When our sitter brings her year and a half daughter over to our house, Raquel clearly models what she is doing. You would assume she would try to copy Gabby because of all the time they spend together, but I think it helps to have someone smaller and acting more at her level. Gabby tends to be all over the place doing a million things at once, and I think that often overwhelms Raquel. When Gabby will intentionally sit down and play with her one-on-one, she seems to do much better in that regard and sucks up all the attention Gabby is giving her. You can really see Raquel sparkle when Gabby gives her her undivided attention.
Raquel is also listening more and clearly understands what we tell her. She is jabbering more and trying to initiate conversations. And she's trying to vocalize answers to my questions. It will be interesting to see how this develops.
As far as the Prednisone goes, I'm not starting that immediately after the Depakote is over with. I want to wait a couple weeks to see how she's handling the Keppra so I can determine whether or not she is having adverse side effects from that before adding another medication. Her neurologist is fine with that, and we have our next follow up appointment with him on October 13th.
The journey continues...
Monday, August 30, 2010
Tuesday, August 17, 2010
Video EEG Complete
I am very happy to report that Raquel's 24-hour inpatient Video EEG Monitoring test is complete and she is home and resting comfortably. Here are some pictures:
Gabby being a little nervous waiting for the EEG technicians to come in. She stayed right next to Raquel until they asked her to leave.
Here she is in her hospital gown waiting with dad while they got the equipment in order.
Here's what the electrodes look like. They get glued all over her head - and there's a whole lot of them.
It doesn't hurt when they do this. She was mad that she was being confined - and it does take a little while to hook them all up. A nurse wrapped her in a sheet to keep her arms from moving, and I had to restrain her legs. Then they wrap gauze all over her and top it with a gauze cap.
Introducing my very tired Little Smurf.
She eventually did take a nap ...
...but only for 15 minutes. Even though she had all that stuff on, she was a real trooper the entire time. I had to keep her confined to her bed for the full 24-hours. She wasn't able to walk around, not even in the room. Keeping her centered in front of the camera wasn't that easy at first, but I ended up laying down with her and watching television, reading books, etc. and I think she got very used to having some quiet time with Mom. We ordered room service, had people from the playroom constantly checking on us to see if we needed any toys, etc., and a lady from the healing center even came in to play the harp.
This is what the VEM looks like. To the right was a live video shot of Raquel. To the left was the EEG being displayed. This test allowed Dr. Mower to observe Raquel's movements while observing the EEG at the same time to make sure her physical activity is consistent with her brain activity. It was all very fascinating.
Dr. Mower came to check on us yesterday at lunch, as well as this morning to sign off on our discharge papers, discuss the test results and make some medication changes.
Here she is getting the electrodes taken off. I told you there were a lot! And even though they tried to get all the gunk out of her hair and even sort of washed it, boy does she stink! It will probably take a week of shampooing to completely rid the smell.
Besides stinking and having a red mark on her forehead from one of the electrodes, she's back to her normal self and obviously very happy to home, able to walk around, and get back into her normal daily routine.
So, what were the findings? Well, I guess there's good news and bad news. The good news is that she is not having seizures. The bad news is that she is still having abnormal brain discharges at night while she is sleeping. This is pretty consistent with Landau-Kleffner Syndrome (also called epileptic aphasia). These discharges don't appear to be less frequent than they originally were when we did the in-home EEG over a year ago. That basically means that the Depakote she's been on has not helped in this regard, and, since I am having issues with her being on it in the first place, we are weaning her off of it and on to another one and then adding a very low dose of Prednisone, which is typically what is done when treating LKS. Prednisone is often attributed to producing speech. We have a follow-up with Dr. Mower in 8 weeks, then have to do the 24-hour VEM all over again in 3 months so he'll be able to tell if his treatment is working as it should be.
I'm not really happy about having to do it all over again, but it definitely wasn't as bad as I thought it would be. It's just more of an inconvenience. And the overnight stay really put things into perspective because we were in the Hem/Onc department and there were all of these bald little kids walking the halls and being pushed around. Raquel may have looked like a smurf for 24-hours, but I'm fortunate I was able to lay in bed with her and watch tv instead of sitting next to her in the chemo room with an IV. That was brutal to watch. One of the little boys was just a year and a half old, and he came to say good-bye to her when we were leaving.
Again, more answers, not all of them good, but I continue to remain positive and am happy we are making medication changes. The cup is still half full, remember?
Gabby being a little nervous waiting for the EEG technicians to come in. She stayed right next to Raquel until they asked her to leave.
Here she is in her hospital gown waiting with dad while they got the equipment in order.
Here's what the electrodes look like. They get glued all over her head - and there's a whole lot of them.
It doesn't hurt when they do this. She was mad that she was being confined - and it does take a little while to hook them all up. A nurse wrapped her in a sheet to keep her arms from moving, and I had to restrain her legs. Then they wrap gauze all over her and top it with a gauze cap.
Introducing my very tired Little Smurf.
She eventually did take a nap ...
...but only for 15 minutes. Even though she had all that stuff on, she was a real trooper the entire time. I had to keep her confined to her bed for the full 24-hours. She wasn't able to walk around, not even in the room. Keeping her centered in front of the camera wasn't that easy at first, but I ended up laying down with her and watching television, reading books, etc. and I think she got very used to having some quiet time with Mom. We ordered room service, had people from the playroom constantly checking on us to see if we needed any toys, etc., and a lady from the healing center even came in to play the harp.
This is what the VEM looks like. To the right was a live video shot of Raquel. To the left was the EEG being displayed. This test allowed Dr. Mower to observe Raquel's movements while observing the EEG at the same time to make sure her physical activity is consistent with her brain activity. It was all very fascinating.
Dr. Mower came to check on us yesterday at lunch, as well as this morning to sign off on our discharge papers, discuss the test results and make some medication changes.
Here she is getting the electrodes taken off. I told you there were a lot! And even though they tried to get all the gunk out of her hair and even sort of washed it, boy does she stink! It will probably take a week of shampooing to completely rid the smell.
Besides stinking and having a red mark on her forehead from one of the electrodes, she's back to her normal self and obviously very happy to home, able to walk around, and get back into her normal daily routine.
So, what were the findings? Well, I guess there's good news and bad news. The good news is that she is not having seizures. The bad news is that she is still having abnormal brain discharges at night while she is sleeping. This is pretty consistent with Landau-Kleffner Syndrome (also called epileptic aphasia). These discharges don't appear to be less frequent than they originally were when we did the in-home EEG over a year ago. That basically means that the Depakote she's been on has not helped in this regard, and, since I am having issues with her being on it in the first place, we are weaning her off of it and on to another one and then adding a very low dose of Prednisone, which is typically what is done when treating LKS. Prednisone is often attributed to producing speech. We have a follow-up with Dr. Mower in 8 weeks, then have to do the 24-hour VEM all over again in 3 months so he'll be able to tell if his treatment is working as it should be.
I'm not really happy about having to do it all over again, but it definitely wasn't as bad as I thought it would be. It's just more of an inconvenience. And the overnight stay really put things into perspective because we were in the Hem/Onc department and there were all of these bald little kids walking the halls and being pushed around. Raquel may have looked like a smurf for 24-hours, but I'm fortunate I was able to lay in bed with her and watch tv instead of sitting next to her in the chemo room with an IV. That was brutal to watch. One of the little boys was just a year and a half old, and he came to say good-bye to her when we were leaving.
Again, more answers, not all of them good, but I continue to remain positive and am happy we are making medication changes. The cup is still half full, remember?
Friday, August 13, 2010
VEM This Monday
It seems like we've been waiting forever to have the 24-hour Video EEG Monitoring test done at Children's Hospital. I'd be lying if I said I was looking forward to Monday. What I'm looking forward to is getting the test over with. I've talked to several people who have either had the test done themselves or who had to take their kid in to have it done. Sounds like it is far from being a picnic but regardless, it is something that needs to be done and we'll deal with it the best we can.
The hospital called earlier today to confirm the appointment and to remind me that they would prefer her to be sleep deprived. Of course THEY would like that. They aren't the ones attempting to keep her up all night then dealing with her crankiness from the lack of sleep. I told the nurse that I would try, however the medication she is on makes her extremely drowsy. They would like Raquel to be asleep for a good portion of the EEG, and I really don't think that will be a problem if she's well rested going in because of her being on the meds. Food is provided (for her), but they recommend that I bring her usual snacks and some of her favorite items to play with so things stay as normal as possible. There will be a television in her room and I can bring some dvds to play in addition to that, but they really want her confined to her bed as much as possible and not wandering around.
A few of the reasons for doing this test are:
The hospital called earlier today to confirm the appointment and to remind me that they would prefer her to be sleep deprived. Of course THEY would like that. They aren't the ones attempting to keep her up all night then dealing with her crankiness from the lack of sleep. I told the nurse that I would try, however the medication she is on makes her extremely drowsy. They would like Raquel to be asleep for a good portion of the EEG, and I really don't think that will be a problem if she's well rested going in because of her being on the meds. Food is provided (for her), but they recommend that I bring her usual snacks and some of her favorite items to play with so things stay as normal as possible. There will be a television in her room and I can bring some dvds to play in addition to that, but they really want her confined to her bed as much as possible and not wandering around.
A few of the reasons for doing this test are:
- to distinguish epileptic seizures from episodes that may mimic epileptic seizures;
- to characterize the type or types of seizures that a child is having, and
- to localize the part of the brain where the seizures are coming from.
In Raquel's case, her neurologist is not convinced she is having true seizures, but the in-home EEG we did awhile back showed that she was having abnormal brain discharges, particularly at night. These discharges were similar to Landau-Kleffner Syndrome, and the VEM will show whether or not she has this.
We should have some more insight early next week as to what is making Raquel tick. Hopefully it will show that she's not having any seizures at all and can be weaned off the medications completely. If it shows she does need to be on an anti-convulsant, we will pursue other meds that are more suitable for her so she can stop suffering from all the adverse side effects.
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