After suddenly stopping the phenytoin on Monday, Annie did have one day of increased seizures, and long seizures, but she now seems to be back to her baseline as far as the seizures go. She is back to having her regular spasms and startle seizures. If only Molly wouldn't sneeze so often and abruptly!
The big change the last couple days has been Annie's sleepiness. The last two mornings, Annie has slept in until 11:30am, which is not like her! I haven't dared wake her up because I don't want to trigger seizures, and I figure her body must need the sleep. Once she wakes up, she's still a little tired it seems, and she's not quite as active with her toys or as vocal as normal. We wonder if this is still a side effect of coming off the phenytoin so suddenly.
Annie is still drooling like crazy and has a lot of thick phlegm that is requiring more suction than normal. We are hoping its just from the tail end of her cold. We had her IEP meeting at the school on Wednesday, and are looking forward to transitioning her back to school, but I'm not sure how they will keep her dry! Her seizures seem stable enough for her to return to school, but I also don't know how she will tolerate getting up at 6:00am when she's been sleeping in until 11:30 each morning. We are going to try to get her back on a more normal sleep schedule the next few days with the hopes she can return to school on Monday, even if she goes late. She won't have full days of school next Tuesday or Wednesday anyway due to more appointments at the hospital. So hopefully we can do a nice easy transition to school next week.
Thursday, October 17, 2019
Wednesday, October 16, 2019
Justin's Talk About Annie
Justin decided to let me share his talk that he gave on Sunday in church if you are interested in listening. The first half or so is about Annie's diagnosis, abilities, how to interact with Annie, etc., and the second half is a little bit more about how the gospel of Jesus Christ applies to Annie's life and brings us peace and comfort as we face challenges with her.
Monday, October 14, 2019
Slight Change of Plans
Due to the rash that Annie has developed, our neurologist has instructed us to immediately stop the phenytoin. It's usually best to do a slow wean over a couple weeks, but our wean took place over 36 hours! This does put Annie at an increased risk of more seizures, so we'll need to keep an extra eye on her the next few days.
We've had to reschedule Annie's IEP yet again, due to this change. We won't be able to send Annie back to school until we make sure her seizures are stable. We do plan to have her IEP on Wednesday now, whether she returns to school sometime this week or not.
Annie has been feeling a bit better today with less congestion and not as much need for suction. So things in that area seem to be improving.
We've had to reschedule Annie's IEP yet again, due to this change. We won't be able to send Annie back to school until we make sure her seizures are stable. We do plan to have her IEP on Wednesday now, whether she returns to school sometime this week or not.
Annie has been feeling a bit better today with less congestion and not as much need for suction. So things in that area seem to be improving.
Sunday, October 13, 2019
A New Rash
We noticed this morning that Annie has developed a rash over her whole torso. By this evening, it had spread to her arms. This kind of rash is a somewhat common side effect of the phenytoin, after being on it for a while. Ironically, we had decided yesterday that we would start weaning her off of it today, before we knew that a rash would develop. The prescribed wean would take a full two weeks until we could completely stop the phenytoin, but now with this rash developing, we suspect we might need to do a faster wean. We'll be in touch with Annie's neurologist tomorrow to figure that out.
Even after having only one lower dose of the phenytoin, Annie has had more seizures this evening. We're not sure if they would have happened anyway, or if they are due to the drop in phenytoin. A risk of stopping phenytoin too quickly without weaning off of it slowly, is that Annie could more easily develop seizures. So we may need to find a different seizure medication to take its place until things stabilize.
We had hopes of Annie returning to school on Tuesday, but we're not sure if that will happen. They probably won't let her come to school if she has a rash, and if her seizures are increasing, it's best if I can monitor those with her at home. We still have her school IEP meeting scheduled for Tuesday, so we think we'll keep that in place just in case, and then her IEP will be ready for whenever she does return to school.
In better news, Annie slept through the night last night, for the first time in 2 1/2 months! We also attended church as a family for the first time in that length of time as well. Annie is still far from 100%, but Justin spoke in church today so we all wanted to go hear him. He was asked to talk about Annie to help the congregation understand her Aicardi Syndrome diagnosis, her abilities, how to interact with her, and some of the things we have learned from raising her. I was worried that I would have to sit in the foyer with Annie, so I decided to record the audio from his talk. I'll have to ask Justin's permission, but I may try to share it here on our blog, since he did such a great job.
Even after having only one lower dose of the phenytoin, Annie has had more seizures this evening. We're not sure if they would have happened anyway, or if they are due to the drop in phenytoin. A risk of stopping phenytoin too quickly without weaning off of it slowly, is that Annie could more easily develop seizures. So we may need to find a different seizure medication to take its place until things stabilize.
We had hopes of Annie returning to school on Tuesday, but we're not sure if that will happen. They probably won't let her come to school if she has a rash, and if her seizures are increasing, it's best if I can monitor those with her at home. We still have her school IEP meeting scheduled for Tuesday, so we think we'll keep that in place just in case, and then her IEP will be ready for whenever she does return to school.
In better news, Annie slept through the night last night, for the first time in 2 1/2 months! We also attended church as a family for the first time in that length of time as well. Annie is still far from 100%, but Justin spoke in church today so we all wanted to go hear him. He was asked to talk about Annie to help the congregation understand her Aicardi Syndrome diagnosis, her abilities, how to interact with her, and some of the things we have learned from raising her. I was worried that I would have to sit in the foyer with Annie, so I decided to record the audio from his talk. I'll have to ask Justin's permission, but I may try to share it here on our blog, since he did such a great job.
Friday, October 11, 2019
Plugging along...
Before I get into a little update about Annie, I thought I'd let you know that Justin was asked to speak about Annie at our church service this coming Sunday. He'll be sharing information about her diagnosis, recent illness, her abilities, how to interact with Annie, as well as the blessings she brings to our family. All are welcome to attend. It will be on Sunday, October 13, at 12:00-1:00pm at The Church of Jesus Christ of Latter-day Saints, 12009 S. 84th Street in Papillion.
Annie is still doing about the same. There's not much new to report with her health. She is still struggling with congestion from her cold and we're dealing with a lot of drool. Her increased secretions may be from her cold, but she also has developed a canker on her tongue which increases her secretions and makes her want to stick her tongue out all the time.
The swelling in her eyelids is persisting, but the swelling in her feet is coming and going, along with her distended tummy. We visited her pediatrician yesterday, and he didn't seem concerned about her swelling. Her blood pressure is good and her kidneys seem to be working well and have recently been scanned multiple times, so he attributes the facial swelling to her cold.
The pediatrician checked Annie's urine yesterday and the UA results were really good, but we'll have to wait a few days for the culture results. She also had a plug in the catheter that is being sent to the lab, since that was unusual and a bit suspicious. She's still having a couple seizures each day, mostly the outbursts of either crying or laughing, which seem to happen mostly in the middle of the night. We won't start weaning off the phenytoin until Annie is over her cold.
Last night Justin and I took Annie with us to the Med Center to attend a class on transitioning to adulthood. They offer a full series of classes to help parents like us plan for our special needs child's future after high school. While the classes are incredibly helpful, they are a bit somber to attend. They are a reminder to every parent in the room just how different of a life our children are living from what we had once hoped and dreamed to experience with them. But that room is also filled with parents who are full of resiliency, have incredible love for their children, and are powerful advocates, dedicated to providing their children with the best future possible. It's easy to look around the room and think, "These are our people--they know our struggles." It was also fun to see another Aicardi mom tonight that we're friends with. There are very few of us in the Aicardi world, so it's nice to see them when we can.
Last night's meeting was on SSI benefits and managing our adult child's finances and benefits. Other class topics include learning about going to court to get guardianship, DD services, day programs for adults, continuing education, insurance and waiver programs, transitioning to adult medical providers, and so on. There is so much to learn!
On another note, the biggest highlight of my day today was that a sweet member from our church came with her professional cleaning crew to clean my whole house! She owns a cleaning company and called me to say she wanted to come clean our house! I was so humbled and grateful, but I had no idea that she would be bringing two other women to help her and they would spend more than 4 hours cleaning! My house hasn't been this clean since we moved in! We are SO thankful for such meaningful service! With Annie in the hospital and then even at home with her requiring so much care, we often just don't have the time or the energy to spend time cleaning. I was so embarrassed to have them see our dirty, neglected house, but they all just happily worked for half the day! What a huge blessing!
Annie is still doing about the same. There's not much new to report with her health. She is still struggling with congestion from her cold and we're dealing with a lot of drool. Her increased secretions may be from her cold, but she also has developed a canker on her tongue which increases her secretions and makes her want to stick her tongue out all the time.
The swelling in her eyelids is persisting, but the swelling in her feet is coming and going, along with her distended tummy. We visited her pediatrician yesterday, and he didn't seem concerned about her swelling. Her blood pressure is good and her kidneys seem to be working well and have recently been scanned multiple times, so he attributes the facial swelling to her cold.
The pediatrician checked Annie's urine yesterday and the UA results were really good, but we'll have to wait a few days for the culture results. She also had a plug in the catheter that is being sent to the lab, since that was unusual and a bit suspicious. She's still having a couple seizures each day, mostly the outbursts of either crying or laughing, which seem to happen mostly in the middle of the night. We won't start weaning off the phenytoin until Annie is over her cold.
Last night Justin and I took Annie with us to the Med Center to attend a class on transitioning to adulthood. They offer a full series of classes to help parents like us plan for our special needs child's future after high school. While the classes are incredibly helpful, they are a bit somber to attend. They are a reminder to every parent in the room just how different of a life our children are living from what we had once hoped and dreamed to experience with them. But that room is also filled with parents who are full of resiliency, have incredible love for their children, and are powerful advocates, dedicated to providing their children with the best future possible. It's easy to look around the room and think, "These are our people--they know our struggles." It was also fun to see another Aicardi mom tonight that we're friends with. There are very few of us in the Aicardi world, so it's nice to see them when we can.
Last night's meeting was on SSI benefits and managing our adult child's finances and benefits. Other class topics include learning about going to court to get guardianship, DD services, day programs for adults, continuing education, insurance and waiver programs, transitioning to adult medical providers, and so on. There is so much to learn!
On another note, the biggest highlight of my day today was that a sweet member from our church came with her professional cleaning crew to clean my whole house! She owns a cleaning company and called me to say she wanted to come clean our house! I was so humbled and grateful, but I had no idea that she would be bringing two other women to help her and they would spend more than 4 hours cleaning! My house hasn't been this clean since we moved in! We are SO thankful for such meaningful service! With Annie in the hospital and then even at home with her requiring so much care, we often just don't have the time or the energy to spend time cleaning. I was so embarrassed to have them see our dirty, neglected house, but they all just happily worked for half the day! What a huge blessing!
Tuesday, October 8, 2019
A Terrible Cold
We've suspected for several days that Annie has a cold that is causing some infrequent vomiting. She made it very clear to us yesterday that she does in fact have a cold. Yesterday must have been her peak day. She struggled to deal with the congestion, and I used suction a lot to help her breathe more easily. We're keeping her on Robitussin around the clock, which is helping, but she's still vomiting a couple times each night due to the congestion.
Annie has also developed swollen eyelids. This might be due to her cold. But yesterday her feet also became swollen. I've been keeping her up in her chair all day the last few days to help with congestion, so I wonder if that's why her feet are swelling. That's not typical for her though, even after being in her chair all day, so we do worry about a kidney or heart problem. It's not normal for her to retain fluids like this. So we're not totally sure what's going on.
I cancelled her bladder scan study that was supposed to be yesterday because of the illness--we would not have gotten accurate results. She will still have the study done, but right now we don't have a date.
I've had to reschedule her brain MRI that was supposed to be tomorrow, because of her cold as well. Since Annie has to be under sedation for the MRI, it's not safe for her to have all this congestion when sedated, otherwise she could choke or aspirate on it. Unfortunately, the next available time isn't until November 6th. But the MRI isn't urgent, so we'll just wait until then.
Annie will see her pediatrician on Thursday to recheck her urine and evaluate her edema. We're making tentative plans for her to return to school next Tuesday, but we'll see how she does until then.
I was able to take Annie to the high school today to be in her senior class picture. I really wanted her to be included and be able to be remembered. It's one of those "chronic sorrow" experiences to have her graduating from high school. In no way is she a typical high school senior, and we are missing out on a lot of typical experiences that we won't ever get to have with her. It's strange to think that all the other seniors Annie's age are driving, dating, and making their college plans. It's such an exciting time of life for them and their families, but nothing will be changing for Annie. She is our forever little girl. But I'm so grateful that she is doing as well as she is, that she can be at home with us, and that we can enjoy her smiles and giggles. It's always humbling to think about how Heavenly Father has entrusted her to us.
I'm also grateful for all of Annie's good friends at school. She has so many teachers and friends there, some who she got to see today. It warms my heart to know that she is missed at school. Hopefully she will be feeling better soon and be back to school!
Annie has also developed swollen eyelids. This might be due to her cold. But yesterday her feet also became swollen. I've been keeping her up in her chair all day the last few days to help with congestion, so I wonder if that's why her feet are swelling. That's not typical for her though, even after being in her chair all day, so we do worry about a kidney or heart problem. It's not normal for her to retain fluids like this. So we're not totally sure what's going on.
I cancelled her bladder scan study that was supposed to be yesterday because of the illness--we would not have gotten accurate results. She will still have the study done, but right now we don't have a date.
I've had to reschedule her brain MRI that was supposed to be tomorrow, because of her cold as well. Since Annie has to be under sedation for the MRI, it's not safe for her to have all this congestion when sedated, otherwise she could choke or aspirate on it. Unfortunately, the next available time isn't until November 6th. But the MRI isn't urgent, so we'll just wait until then.
Annie will see her pediatrician on Thursday to recheck her urine and evaluate her edema. We're making tentative plans for her to return to school next Tuesday, but we'll see how she does until then.
I was able to take Annie to the high school today to be in her senior class picture. I really wanted her to be included and be able to be remembered. It's one of those "chronic sorrow" experiences to have her graduating from high school. In no way is she a typical high school senior, and we are missing out on a lot of typical experiences that we won't ever get to have with her. It's strange to think that all the other seniors Annie's age are driving, dating, and making their college plans. It's such an exciting time of life for them and their families, but nothing will be changing for Annie. She is our forever little girl. But I'm so grateful that she is doing as well as she is, that she can be at home with us, and that we can enjoy her smiles and giggles. It's always humbling to think about how Heavenly Father has entrusted her to us.
I'm also grateful for all of Annie's good friends at school. She has so many teachers and friends there, some who she got to see today. It warms my heart to know that she is missed at school. Hopefully she will be feeling better soon and be back to school!
Sunday, October 6, 2019
Gelastic Seizures
Annie's vomiting has lessened as we've given her Robitussin--we think she has just had a hard time dealing with congestion. However, Annie is now having more gelastic seizures. It's hard to put a number on how many she's having each day. Gelastic seizures are seizures that present as sudden, unexplainable, outbursts of emotion.
Annie's gelastic seizures typically present as sudden laughing and giggling, sometimes so hard that she can't catch her breath. However, she has also had some occasional outbursts of crying and sadness.
We're relieved that the vomiting hasn't continued, but we're still using suction regularly. We'll have to do her bladder scan study another time, but she's still scheduled for her brain MRI on Wednesday. And soon we'll start weaning Annie off her phenytoin, so we'll see what her seizures start doing then.
The great news is that our furnace started working again! Justin fiddled with it and it now seems to be working just fine. So that's a huge relief!
Annie's gelastic seizures typically present as sudden laughing and giggling, sometimes so hard that she can't catch her breath. However, she has also had some occasional outbursts of crying and sadness.
We're relieved that the vomiting hasn't continued, but we're still using suction regularly. We'll have to do her bladder scan study another time, but she's still scheduled for her brain MRI on Wednesday. And soon we'll start weaning Annie off her phenytoin, so we'll see what her seizures start doing then.
The great news is that our furnace started working again! Justin fiddled with it and it now seems to be working just fine. So that's a huge relief!
Friday, October 4, 2019
Fewer Seizures, More Vomiting
I feel a bit like a broken record with my posts lately. But several people have been asking about Annie, so I thought I better post an update, even though I don't have much new to report.
Annie is only having maybe one seizure a day that we are noticing. We're very happy with her level of seizure control right now. That may change as we wean her off the phenytoin in a week or so.
Annie had a pretty great day yesterday and went a full 24 hours without vomiting, so I thought she was over that. However, overnight last night, Annie started throwing up again. She is definitely congested, so we're trying some Robitussin to help with her secretions and congestion, but so far, I'm not sure it's helping much.
Congestion is really hard for Annie to deal with since she can't blow her nose, so we're using our suction machine regularly to try to keep her comfortable. I'm still not sure if the vomiting is related to the congestion or not. Her vomiting seems less frequent during the day while she's upright in her chair, so maybe her cold really is to blame.
Due to her vomiting, Annie isn't voiding normally, so I had to cancel her bladder scan study that was supposed to be this Monday. There's no reason for us to spend all day doing the study on a day when she's not her normal self. I want the study to be as accurate as possible and be representative of her at her healthiest. It's not an urgent test anyway. We're really just hoping that Annie is well enough by Wednesday to move forward with her brain MRI. Since it's under sedation, she can't be vomiting.
It actually worked out well for me to cancel Annie's all-day appointment on Monday because this morning our furnace broke. We just had it repaired six months ago, so we're surprised to have more problems with it already. A repairman is able to come on Monday, so it works out well for me to actually be home that day instead of being at the hospital all day as previously planned. Fortunately, our temperatures aren't too very cold this weekend. We only turned on our furnace yesterday for the first time this season, mostly just to stay warm overnight. We have some awesome gas fireplaces that put out a ton of heat, and an extra blanket at night should be sufficient.
This weekend is the worldwide General Conference for our church, The Church of Jesus Christ of Latter-day Saints. I'm always excited for conference, but this time I am looking forward to it even more. I think our family really needs this weekend full of uplifting and inspiring messages from the prophet, apostles, and other church leaders. I hope it is a weekend of increased faith, peace, hope, and coziness.
Annie is only having maybe one seizure a day that we are noticing. We're very happy with her level of seizure control right now. That may change as we wean her off the phenytoin in a week or so.
Annie had a pretty great day yesterday and went a full 24 hours without vomiting, so I thought she was over that. However, overnight last night, Annie started throwing up again. She is definitely congested, so we're trying some Robitussin to help with her secretions and congestion, but so far, I'm not sure it's helping much.
Congestion is really hard for Annie to deal with since she can't blow her nose, so we're using our suction machine regularly to try to keep her comfortable. I'm still not sure if the vomiting is related to the congestion or not. Her vomiting seems less frequent during the day while she's upright in her chair, so maybe her cold really is to blame.
Due to her vomiting, Annie isn't voiding normally, so I had to cancel her bladder scan study that was supposed to be this Monday. There's no reason for us to spend all day doing the study on a day when she's not her normal self. I want the study to be as accurate as possible and be representative of her at her healthiest. It's not an urgent test anyway. We're really just hoping that Annie is well enough by Wednesday to move forward with her brain MRI. Since it's under sedation, she can't be vomiting.
It actually worked out well for me to cancel Annie's all-day appointment on Monday because this morning our furnace broke. We just had it repaired six months ago, so we're surprised to have more problems with it already. A repairman is able to come on Monday, so it works out well for me to actually be home that day instead of being at the hospital all day as previously planned. Fortunately, our temperatures aren't too very cold this weekend. We only turned on our furnace yesterday for the first time this season, mostly just to stay warm overnight. We have some awesome gas fireplaces that put out a ton of heat, and an extra blanket at night should be sufficient.
This weekend is the worldwide General Conference for our church, The Church of Jesus Christ of Latter-day Saints. I'm always excited for conference, but this time I am looking forward to it even more. I think our family really needs this weekend full of uplifting and inspiring messages from the prophet, apostles, and other church leaders. I hope it is a weekend of increased faith, peace, hope, and coziness.
Wednesday, October 2, 2019
Vomiting is Back
We thought Annie was starting to do a little better. Her seizures have been so mild that we usually don't catch them at all unless we happen to be looking at her hand or holding her hand. However, last night Annie started vomiting again. She vomited again this morning right after getting her morning meds, so I waited a little while for her tummy to rest, and then re-dosed her seizure meds. I waited a full 2 hours for those to stay down, and then started her on some Gatorade.
While her stomach was empty earlier today, Annie had a big seizure followed by strong retching. If she had had anything in her stomach, I'm sure she would have thrown up. It was almost as if the seizure induced the retching, but I'm not sure.
Annie tolerated the Gatorade all day, so late this afternoon I started her back very slowly on her formula. She did well for a few hours, so I increased the rate, but then about two hours later, she threw up twice. So we went back to Gatorade and will continue that through the night and see if tomorrow is better.
We really don't know what could be causing this vomiting. Today was her last day on the antibiotics, so her UTI should be totally cleared up. Molly has had a cold, so we wonder if Annie has caught that cold from Molly, even though Molly isn't really home much. Colds for Annie can cause vomiting because she can't tolerate any amount of congestion. She can't blow her nose, and ends up gagging on secretions and phlegm which make her vomit. She doesn't sound congested tonight after putting her to bed, but we'll definitely be trying some decongestants tomorrow if the vomiting continues.
So we're back to our goal of just staying hydrated. Dehydration can affect Annie's seizures, but also being off of her normal diet, or anything else that disrupts her routines can also increase her seizures. So hopefully the vomiting doesn't persist. One more week until her brain MRI. Pray that she is well enough for it to move forward. Since she'll require full sedation for the MRI, she has to be healthy and well and not vomiting. She also has to be very hydrated for her bladder scan study coming up on Monday!
While her stomach was empty earlier today, Annie had a big seizure followed by strong retching. If she had had anything in her stomach, I'm sure she would have thrown up. It was almost as if the seizure induced the retching, but I'm not sure.
Annie tolerated the Gatorade all day, so late this afternoon I started her back very slowly on her formula. She did well for a few hours, so I increased the rate, but then about two hours later, she threw up twice. So we went back to Gatorade and will continue that through the night and see if tomorrow is better.
We really don't know what could be causing this vomiting. Today was her last day on the antibiotics, so her UTI should be totally cleared up. Molly has had a cold, so we wonder if Annie has caught that cold from Molly, even though Molly isn't really home much. Colds for Annie can cause vomiting because she can't tolerate any amount of congestion. She can't blow her nose, and ends up gagging on secretions and phlegm which make her vomit. She doesn't sound congested tonight after putting her to bed, but we'll definitely be trying some decongestants tomorrow if the vomiting continues.
So we're back to our goal of just staying hydrated. Dehydration can affect Annie's seizures, but also being off of her normal diet, or anything else that disrupts her routines can also increase her seizures. So hopefully the vomiting doesn't persist. One more week until her brain MRI. Pray that she is well enough for it to move forward. Since she'll require full sedation for the MRI, she has to be healthy and well and not vomiting. She also has to be very hydrated for her bladder scan study coming up on Monday!
Tuesday, October 1, 2019
A Better Day
Annie had a little bit better day today. Her seizures have decreased dramatically, thankfully. She is still having very mild seizures occasionally where she is clenching and then twitching her fist, but that is a huge improvement over the more dramatic and frequent seizures we've seen this past week. We aren't sure if her Sabril has finally caught up and is working again, or if it's the Dilantin that has brought about this improvement. We'll find out in a week or two when we start weaning her off the Dilantin.
For the last couple days Annie has been having quite a bit of irritability and agitation. We aren't sure if it is due to pain, disruption of her routine and regular sleep schedule, withdrawal from not having as much Ativan lately, or a side effect of the Dilantin. We are trying to keep her off the Ativan so she can get more restorative sleep and get back into her regular routines which will hopefully help.
Tomorrow is Annie's last day on antibiotics for her UTI, which will be nice. Her antibiotic has it's own negative GI side effects so we're glad to almost be done with that. Overall, I think Annie is starting to improve, but the true test will be when we wean her off the Dilantin. We may have to start experimenting all over with another anticonvulsant to add, but we really pray that her Sabril alone will be sufficient.
For the last couple days Annie has been having quite a bit of irritability and agitation. We aren't sure if it is due to pain, disruption of her routine and regular sleep schedule, withdrawal from not having as much Ativan lately, or a side effect of the Dilantin. We are trying to keep her off the Ativan so she can get more restorative sleep and get back into her regular routines which will hopefully help.
Tomorrow is Annie's last day on antibiotics for her UTI, which will be nice. Her antibiotic has it's own negative GI side effects so we're glad to almost be done with that. Overall, I think Annie is starting to improve, but the true test will be when we wean her off the Dilantin. We may have to start experimenting all over with another anticonvulsant to add, but we really pray that her Sabril alone will be sufficient.
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