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.
Sunday, October 13, 2019
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.
Sunday, September 29, 2019
Bad Days and Better Days
We've been on a roller-coaster the last few days. On Friday, Annie ended up sleeping the entire day. She woke up early but fell back asleep around 8am. She was awake for only about 15 minutes around noon, but was very spacey and unfocused. She then slept solidly until we finally woke her up around 10pm, wondering if we needed to take her to the ER.
I kept her on an air bed in our family room all day Friday to monitor her and she was rather unresponsive to everything going on around her, although she was still having some mild seizures. Her breathing was obstructing through the day, so I had to keep a close eye on her and keep her positioned just right.
That night, we began to be worried that she still hadn't woken up all day. As a pharmacist, Justin knows that phenytoin, which Annie just started Wednesday, is metabolized very differently in each person and if not metabolized correctly, can cause a coma state, and even be fatal if levels build up too high in the body. Justin calculated what dose of phenytoin Annie should be on based on her weight, and we discovered that her dose is almost twice the recommended amount. We thought we better get her to the ER, but once we got her in her wheelchair, she started waking up. She was very groggy and immediately started having more seizures, meaning she must not have too high a level of phenytoin in her system. She was rather groggy and grouchy, but eventually calmed down and went to bed for the night.
Saturday was much different. We're trying to not give Annie Ativan with the way it might be reacting with the phenytoin, causing her to be so incredibly sedate all day. So Saturday we just tolerated more seizures, although they seem to be much milder. It's possible that Annie had more seizures than we were able to see though, since her jerking was less pronounced, it was harder to catch them all unless we kept our eyes continually on her.
Today, Sunday, Annie seems to be doing maybe a little better, going even a whole hour or two without seizures, unless we are just missing mild ones. But other times, she is still seizing 5-6 times an hour. She is also rather irritable and cranky at times for reasons we don't understand.We think she might just be wearing herself out from the seizures.
Each day seems to be so different for her, we just don't know what each new day will bring. In a couple weeks, we'll need to take Annie off the phenytoin, so we pray that her Sabril will have caught up by then and kicked in without an increase of seizures as we wean off the phenytoin.
We don't have any appointments or testing this week, that we know of now. But the week after will be a busy one with her bladder scans, brain MRI, and urine check. Then in a couple weeks she has another sonogram of her blood clot to monitor it. We appreciate all the continued prayers for her healing.
I kept her on an air bed in our family room all day Friday to monitor her and she was rather unresponsive to everything going on around her, although she was still having some mild seizures. Her breathing was obstructing through the day, so I had to keep a close eye on her and keep her positioned just right.
That night, we began to be worried that she still hadn't woken up all day. As a pharmacist, Justin knows that phenytoin, which Annie just started Wednesday, is metabolized very differently in each person and if not metabolized correctly, can cause a coma state, and even be fatal if levels build up too high in the body. Justin calculated what dose of phenytoin Annie should be on based on her weight, and we discovered that her dose is almost twice the recommended amount. We thought we better get her to the ER, but once we got her in her wheelchair, she started waking up. She was very groggy and immediately started having more seizures, meaning she must not have too high a level of phenytoin in her system. She was rather groggy and grouchy, but eventually calmed down and went to bed for the night.
Saturday was much different. We're trying to not give Annie Ativan with the way it might be reacting with the phenytoin, causing her to be so incredibly sedate all day. So Saturday we just tolerated more seizures, although they seem to be much milder. It's possible that Annie had more seizures than we were able to see though, since her jerking was less pronounced, it was harder to catch them all unless we kept our eyes continually on her.
Today, Sunday, Annie seems to be doing maybe a little better, going even a whole hour or two without seizures, unless we are just missing mild ones. But other times, she is still seizing 5-6 times an hour. She is also rather irritable and cranky at times for reasons we don't understand.We think she might just be wearing herself out from the seizures.
Each day seems to be so different for her, we just don't know what each new day will bring. In a couple weeks, we'll need to take Annie off the phenytoin, so we pray that her Sabril will have caught up by then and kicked in without an increase of seizures as we wean off the phenytoin.
We don't have any appointments or testing this week, that we know of now. But the week after will be a busy one with her bladder scans, brain MRI, and urine check. Then in a couple weeks she has another sonogram of her blood clot to monitor it. We appreciate all the continued prayers for her healing.
Thursday, September 26, 2019
Still More Seizures
Annie's loading dose of fosphenytoin lasted about 7 hours last night before some very subtle seizures started back up. With Aicardi Syndrome, we know that we will never get complete seizure control, but we were surprised to see even mild seizure activity after such a huge dose of anticonvulsants in the ER. Annie was incredibly sedated last night and had difficulties breathing, so we kept a close eye on her.
This morning the seizures were back as frequent as ever, occurring every 7-15 minutes. She got her first dose of oral phenytoin, so I waited to see how that might work. She continued seizing through the whole day about every 7-20 minutes, but the seizures today were much more mild than previous days, and a bit more tolerable. They didn't seem to bother Annie much until about 3:00 today when she started crying and fussing. I think she is so tired but can't get any sleep because the seizures keep her awake. So I finally gave her a full dose of Ativan to see if she would calm down enough to be able to sleep. So far it has helped her seizures, but she is still just as agitated and fussy.
We plan to continue the phenytoin to see if she just needs a bit more time on the oral form, but I think we'll have to supplement with Ativan to keep things more under control. We thought that by now Annie would start to build up enough Sabril effect in her brain that things might slow down, but apparently we're going to have to give it more time still. Annie still has a lot going on in her body and is not even close to being in her normal routines yet, especially with her sleep. Unfortunately, all of those disruptions can also contribute to more seizures.
With all of her seizures lately manifesting on the left side of her body, we are concerned that she has some kind of problem in the right side of her brain. That could be anything from a blood clot, damage from an undiagnosed stroke, increasing intercranial pressure, a tumor, or localized brain damage from seizures. We don't really know. And we don't even know if there's a new physical change in her brain causing these new seizures at all. It still might just be the sudden loss of her Sabril from all her vomiting that is to blame. It's just so hard to know for sure. The MRI of her brain is on October 9th, but that seems like such a long ways away. We are anxious to get that done and see what's going on in there, if anything.
Today I took Annie to see her gastroenterologist. He is fantastic and sat and talked with me at length about how Annie has been doing since being discharged. Even though her hemoglobin is still low, we are going to hold off on starting back on her iron supplements because they can be pretty hard on the GI tract. We suspect that Annie just needs more time on her normal diet again to recover. We'll check her blood levels in another month to see where she is, and then possibly consider starting the iron again. Next month we'll also re-check her ESR and CRP, and some other things as well. We also decided that because Annie has a history of c-diff with antibiotic use, we'll start her on probiotics to help keep her gut bacteria well balanced while we're treating another UTI.
We're so eager to get her feeling better again. It's becoming physically and mentally taxing as Annie is requiring continual 24 hour monitoring and care and lots of appointments and testing. Thankfully, Molly and Lexie have been extremely patient and responsible in taking care of themselves and even helping quite a bit around the house. We much prefer having Annie at home than at the hospital. We just keep praying that these seizures will let up and Annie will be able to get some rest soon and get back to her normal self.
This morning the seizures were back as frequent as ever, occurring every 7-15 minutes. She got her first dose of oral phenytoin, so I waited to see how that might work. She continued seizing through the whole day about every 7-20 minutes, but the seizures today were much more mild than previous days, and a bit more tolerable. They didn't seem to bother Annie much until about 3:00 today when she started crying and fussing. I think she is so tired but can't get any sleep because the seizures keep her awake. So I finally gave her a full dose of Ativan to see if she would calm down enough to be able to sleep. So far it has helped her seizures, but she is still just as agitated and fussy.
We plan to continue the phenytoin to see if she just needs a bit more time on the oral form, but I think we'll have to supplement with Ativan to keep things more under control. We thought that by now Annie would start to build up enough Sabril effect in her brain that things might slow down, but apparently we're going to have to give it more time still. Annie still has a lot going on in her body and is not even close to being in her normal routines yet, especially with her sleep. Unfortunately, all of those disruptions can also contribute to more seizures.
With all of her seizures lately manifesting on the left side of her body, we are concerned that she has some kind of problem in the right side of her brain. That could be anything from a blood clot, damage from an undiagnosed stroke, increasing intercranial pressure, a tumor, or localized brain damage from seizures. We don't really know. And we don't even know if there's a new physical change in her brain causing these new seizures at all. It still might just be the sudden loss of her Sabril from all her vomiting that is to blame. It's just so hard to know for sure. The MRI of her brain is on October 9th, but that seems like such a long ways away. We are anxious to get that done and see what's going on in there, if anything.
Today I took Annie to see her gastroenterologist. He is fantastic and sat and talked with me at length about how Annie has been doing since being discharged. Even though her hemoglobin is still low, we are going to hold off on starting back on her iron supplements because they can be pretty hard on the GI tract. We suspect that Annie just needs more time on her normal diet again to recover. We'll check her blood levels in another month to see where she is, and then possibly consider starting the iron again. Next month we'll also re-check her ESR and CRP, and some other things as well. We also decided that because Annie has a history of c-diff with antibiotic use, we'll start her on probiotics to help keep her gut bacteria well balanced while we're treating another UTI.
We're so eager to get her feeling better again. It's becoming physically and mentally taxing as Annie is requiring continual 24 hour monitoring and care and lots of appointments and testing. Thankfully, Molly and Lexie have been extremely patient and responsible in taking care of themselves and even helping quite a bit around the house. We much prefer having Annie at home than at the hospital. We just keep praying that these seizures will let up and Annie will be able to get some rest soon and get back to her normal self.
Wednesday, September 25, 2019
A Long Day at the Hospital and ER
Annie had her routine annual CDC appointment today where we meet with several of her specialist and therapists. From there, her neurologist then sent us to the ER. Here's a run-down of what we learned today...
First at CDC, we met with our orthopedist. It was quick and simple. Annie's spinal x-rays look great and he's not worried about her back. He said the chances of her back getting infected again this far out from surgery would be extremely rare.
Next, we met with our urologist, but since we've been in such close contact with him this week about Annie's new UTI, we didn't really discuss anything new. We still plan to have her back in clinic in a couple weeks to do regular bladder scans after every wet diaper over a full day. So far, with Annie hydrated again, she seems to be voiding just fine. But it will be good to see how efficiently she's emptying her bladder so we can then make informed decisions about regularly cathing her.
We then met with the developmental pediatrician who also doubled as our metabolics doctor today too. We got Annie's dexa bone density scan results which are pretty good, so no changes there. We asked about a lot of little random things, like all the injection sites on Annie's thighs that have left drops of blood under her skin. Every injection site is still clearly visible, leaving her thighs looking like a pin cushion from her twice daily shots she needs for the next 3-6 months.
Our dietician did her regular consultation with us to make sure Annie's getting the right amount of nutrients, minerals, and vitamins from her formula and her additional supplements. We always talk about calorie needs and assess her weight, and make sure her diet includes enough fluid for her needs. She's been a little low, so we'll be increasing her fluid intake a bit, but not adding more calories.
Our OT assessed Annie and actually told us about a clinic at UNMC that can help us transition Annie from her pediatric providers to new adult providers once she turns 21. Although that's a few years away still, it's a big deal to us since we love her pediatric providers so much and they have such a long history with her. It will be really hard to transition to new providers who don't know who she is or understand her unique history, or have ever even heard of Aicardi Syndrome. It will be a bit overwhelming, so we're grateful to know of this resource at UNMC.
The hospital pharmacist then visited us to make sure they have everything accurately in their system with all the meds Annie is on. That's always a quick visit.
Next was our neurologist, who we've been in close touch with the last several days with Annie's seizures being out of control. We talked at length, and Annie's last Ativan dose wore off, so our neurologist got to see her seizures first hand and how they recur every 10 minutes or so. She decided to have us go to the ER once we finished at CDC, to get a loading dose of fosphenytoin to stop the seizures since the Ativan isn't keeping them away. The Ativan has been stopping her seizures, but they come right back as soon as the Ativan wears off. Once she's had the loading dose in the ER, we'll start Annie on oral phenytoin (Dilantin) for just a couple weeks until her Sabril can catch back up in her system and start working again. The phenytoin has a lot of really nasty side effects, so we don't want her on it long. We'll wean her off of it in a couple weeks and hope the Sabril is working by then. We also talked about doing smaller doses of Ativan more frequently if we are still seeing seizures on the phenytoin. If Annie's seizures are still not under control once she's off the phenytoin, we'll discuss getting another drug on board, probably Onfi. But we're really praying that the Sabril kicks in here soon and we can get off the phenytoin without having to add anything else back in the mix. We still have an MRI of her brain scheduled in a couple weeks, so that will be interesting to check, since she hasn't had a brain MRI in several years.
So once the neurologist had seen Annie's display of seizures, we gave her more Ativan. Then our PT came in to visit with us. We didn't have any PT concerns, so it was just a simple visit and we mostly just chatted about other stuff. We love our PT and how personable she is. We make good friends with a lot of these doctors and therapists after seeing them regularly for so many years. That's why it's going to be so hard to leave them when Annie turns 21 and has to transition to adult providers.
Next was a good visit with our social worker. She talked to us some more about Annie's transition to adulthood and reminded us of how we'll need to apply for SSI for Annie soon when she turns 18. Between now and the age of 21 is a big transition time. Annie will have to move from her Medicaid waiver being managed by DHHS, to the League of Human Dignity. We learned that the waiver will pay me to be Annie's caregiver when she turns 19, and we can get our attorney fees covered by the hospital's legal aid department when we have to apply for guardianship of Annie. There's still lots more to learn about this transition, particularly whether to stay with waiver services or move to DD services when she turns 21. Both programs are great but offer very different things, so we still have a lot to learn before then. Our social worker is so great to point us to different organizations in the community that are excellent resources for parents like us.
We passed on seeing our pulmonologist today because we really don't have any concerns there. Annie's breathing is suppressed while on these sedating meds, so we've just started using her CPAP when she needs it, even though she hasn't needed it for several years now. We're comfortable with using it but hope its not a long-term thing.
From the CDC clinic we went down to the ER for Annie to get her loading dose of fosphenytoin. They had a difficult time starting the IV because Annie has had so many IVs lately that all her veins are pretty much shot. This fosphenytoin has to be given in the ER because there are risks with getting this large loading dose. So Annie had to be on monitors to watch her heart rate, respirations, oxygen sats, and blood pressure. This medication can cause low blood pressure and arrhythmia. Her blood pressure is pretty low even when healthy. She started at 89/60 and it dropped to 71/48, but once it got back up to 79/55, they let us go home. All her other vitals looked good, but her breathing has become very suppressed and she's easily obstructing.
Between this fosphenytoin and the Ativan from this morning, she quickly zonked out. We stayed in the ER for a few hours to monitor her and then headed home. Wednesday evening now, she's still passed out from these meds, but she hasn't had a seizure since about 12:45!! That's amazing! But I'd like to see her a bit more alert and awake and breathing easier.
While she had her IV in, they drew her labs to get a CBC. The ER doctor came to give us the results and thought we were a little crazy with how thrilled we were that her white blood count is down to 10k!! It hasn't been in normal range for the last 4-5 weeks! So that is some of the best news we've gotten all day! Annie's hemoglobin is 10 with a hematocrit of 33. So while that's still pretty low, it's not terrible. We suspect she just needs some more time to recover in that regard.
So it's been a super long day at the hospital and we are all rather exhausted. We have some mixed feelings about today... We're so relieved that Annie isn't having seizures, but we know there's still a chance they start coming back. And it's rather unsettling to see Annie so sedated with such suppressed breathing and hear her obstructing. We were hoping that she could soon sleep alone in her room without one of us in there throughout the night, but she'll require one of us monitoring her more closely again tonight. We'll see how her regular oral doses of phenytoin affect her, and hopefully her seizures will get controlled, without any breathing suppression, so both Justin and I can start getting more sleep each night. We mostly just want our alert and happy Annie back!
First at CDC, we met with our orthopedist. It was quick and simple. Annie's spinal x-rays look great and he's not worried about her back. He said the chances of her back getting infected again this far out from surgery would be extremely rare.
Next, we met with our urologist, but since we've been in such close contact with him this week about Annie's new UTI, we didn't really discuss anything new. We still plan to have her back in clinic in a couple weeks to do regular bladder scans after every wet diaper over a full day. So far, with Annie hydrated again, she seems to be voiding just fine. But it will be good to see how efficiently she's emptying her bladder so we can then make informed decisions about regularly cathing her.
We then met with the developmental pediatrician who also doubled as our metabolics doctor today too. We got Annie's dexa bone density scan results which are pretty good, so no changes there. We asked about a lot of little random things, like all the injection sites on Annie's thighs that have left drops of blood under her skin. Every injection site is still clearly visible, leaving her thighs looking like a pin cushion from her twice daily shots she needs for the next 3-6 months.
Our dietician did her regular consultation with us to make sure Annie's getting the right amount of nutrients, minerals, and vitamins from her formula and her additional supplements. We always talk about calorie needs and assess her weight, and make sure her diet includes enough fluid for her needs. She's been a little low, so we'll be increasing her fluid intake a bit, but not adding more calories.
Our OT assessed Annie and actually told us about a clinic at UNMC that can help us transition Annie from her pediatric providers to new adult providers once she turns 21. Although that's a few years away still, it's a big deal to us since we love her pediatric providers so much and they have such a long history with her. It will be really hard to transition to new providers who don't know who she is or understand her unique history, or have ever even heard of Aicardi Syndrome. It will be a bit overwhelming, so we're grateful to know of this resource at UNMC.
The hospital pharmacist then visited us to make sure they have everything accurately in their system with all the meds Annie is on. That's always a quick visit.
Next was our neurologist, who we've been in close touch with the last several days with Annie's seizures being out of control. We talked at length, and Annie's last Ativan dose wore off, so our neurologist got to see her seizures first hand and how they recur every 10 minutes or so. She decided to have us go to the ER once we finished at CDC, to get a loading dose of fosphenytoin to stop the seizures since the Ativan isn't keeping them away. The Ativan has been stopping her seizures, but they come right back as soon as the Ativan wears off. Once she's had the loading dose in the ER, we'll start Annie on oral phenytoin (Dilantin) for just a couple weeks until her Sabril can catch back up in her system and start working again. The phenytoin has a lot of really nasty side effects, so we don't want her on it long. We'll wean her off of it in a couple weeks and hope the Sabril is working by then. We also talked about doing smaller doses of Ativan more frequently if we are still seeing seizures on the phenytoin. If Annie's seizures are still not under control once she's off the phenytoin, we'll discuss getting another drug on board, probably Onfi. But we're really praying that the Sabril kicks in here soon and we can get off the phenytoin without having to add anything else back in the mix. We still have an MRI of her brain scheduled in a couple weeks, so that will be interesting to check, since she hasn't had a brain MRI in several years.
So once the neurologist had seen Annie's display of seizures, we gave her more Ativan. Then our PT came in to visit with us. We didn't have any PT concerns, so it was just a simple visit and we mostly just chatted about other stuff. We love our PT and how personable she is. We make good friends with a lot of these doctors and therapists after seeing them regularly for so many years. That's why it's going to be so hard to leave them when Annie turns 21 and has to transition to adult providers.
Next was a good visit with our social worker. She talked to us some more about Annie's transition to adulthood and reminded us of how we'll need to apply for SSI for Annie soon when she turns 18. Between now and the age of 21 is a big transition time. Annie will have to move from her Medicaid waiver being managed by DHHS, to the League of Human Dignity. We learned that the waiver will pay me to be Annie's caregiver when she turns 19, and we can get our attorney fees covered by the hospital's legal aid department when we have to apply for guardianship of Annie. There's still lots more to learn about this transition, particularly whether to stay with waiver services or move to DD services when she turns 21. Both programs are great but offer very different things, so we still have a lot to learn before then. Our social worker is so great to point us to different organizations in the community that are excellent resources for parents like us.
We passed on seeing our pulmonologist today because we really don't have any concerns there. Annie's breathing is suppressed while on these sedating meds, so we've just started using her CPAP when she needs it, even though she hasn't needed it for several years now. We're comfortable with using it but hope its not a long-term thing.
From the CDC clinic we went down to the ER for Annie to get her loading dose of fosphenytoin. They had a difficult time starting the IV because Annie has had so many IVs lately that all her veins are pretty much shot. This fosphenytoin has to be given in the ER because there are risks with getting this large loading dose. So Annie had to be on monitors to watch her heart rate, respirations, oxygen sats, and blood pressure. This medication can cause low blood pressure and arrhythmia. Her blood pressure is pretty low even when healthy. She started at 89/60 and it dropped to 71/48, but once it got back up to 79/55, they let us go home. All her other vitals looked good, but her breathing has become very suppressed and she's easily obstructing.
Between this fosphenytoin and the Ativan from this morning, she quickly zonked out. We stayed in the ER for a few hours to monitor her and then headed home. Wednesday evening now, she's still passed out from these meds, but she hasn't had a seizure since about 12:45!! That's amazing! But I'd like to see her a bit more alert and awake and breathing easier.
While she had her IV in, they drew her labs to get a CBC. The ER doctor came to give us the results and thought we were a little crazy with how thrilled we were that her white blood count is down to 10k!! It hasn't been in normal range for the last 4-5 weeks! So that is some of the best news we've gotten all day! Annie's hemoglobin is 10 with a hematocrit of 33. So while that's still pretty low, it's not terrible. We suspect she just needs some more time to recover in that regard.
So it's been a super long day at the hospital and we are all rather exhausted. We have some mixed feelings about today... We're so relieved that Annie isn't having seizures, but we know there's still a chance they start coming back. And it's rather unsettling to see Annie so sedated with such suppressed breathing and hear her obstructing. We were hoping that she could soon sleep alone in her room without one of us in there throughout the night, but she'll require one of us monitoring her more closely again tonight. We'll see how her regular oral doses of phenytoin affect her, and hopefully her seizures will get controlled, without any breathing suppression, so both Justin and I can start getting more sleep each night. We mostly just want our alert and happy Annie back!
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