We're stumped. We've been battling Oliver's screaming/crying/miserable fits for too long now and we are just clueless on how to solve them. Despite all of our best efforts he still cries and screams for hours every day. We have a list of items that might be causing this distress and we're slowing trying to address them one by one in order to get him to a better place. In the meantime he is just an irritable, irrational and miserable little baby who looks absolutely adorable with his lower lip hanging out and a tear rolling out of his eye.
Teeth: Oliver only has 8 teeth and is a bit behind on teething for his age. Likely because he can't hold objects and put them in his mouth and doesn't spend much time chewing. I've started taking a rubber fingertip toothbrush and letting him gnaw on my finger after meals.
Gas: As always, Oliver suffers from intense/extreme gas pain. He was like this from birth to about 4-5 months of age but then did wonderfully until we started the diet. GI doc thinks it's motility issues and wants to put him on a motility med. We want to wait until Oliver is off the seizure drugs to see if he improves. He will also be starting a carnitine supplement as his carnitine levels are low. This helps the body process fats and we hope it will help his tummy feel better.
Reflux: Since starting the high fat diet, Oliver seems to have developed reflux. We don't see any outward signs of it other than his irritability and he's now started this squirming thing whenever we put him in his high chair and start feeding him. He is on Zantac but we're going to try Prevacid to see if it helps. In the meantime I'm setting up a 2nd opinion as our GI doc first told us Oliver had lots of room to increase the Zantac dose and is now saying he doesn't. Either way, he's miserable and we don't see why trying other reflux meds wouldn't be a good option since he's on a reflux med anyway...before introducing the motility med.
Drug Withdrawals: Oliver finished his last daily dose of Clonazepam about 2 weeks ago. It's a tough drug to wean and he's had increasing irritability since we dropped that last little dose. We hope he will be better in a few weeks but we also just started weaning Vigabatrin this past weekend and I'm sure the withdrawal from that is not easy either. If things go well, we will be off the Vigabatrin in 3 months. It's going to be a long 3 months if the wean is hard on him, but we hope once he's off all the seizure meds and just on the diet/supplements that we'll get to see Oliver's true personality. It's been such a long time since he started the meds I am both nervous and excited to see him off the meds.
Please think good thoughts for us as we really want to take him off the Vigabatrin but will not be able to do so if he has a ton of seizures crop up during the wean.
Oliver's ear tube surgery is scheduled for Monday, we have to call on Friday to confirm he has been cleared by neurology and hematology and get our surgery time. We are nervous and excited for this as well. No parent likes to see their child put to sleep and we hope there will be no complications during the surgery but it's supposed to be a simple/easy task and he's been under anesthesia before so we don't anticipate a problem there. Hopefully Oliver will be more comfortable , on antibiotics less often and maybe will be able to hear better.
We had an amazing feeding evaluation with a feeding therapist on Saturday. She and I spoke for about 45 minutes coming up with items on the keto diet that Oliver can try eating that will expand his ability to chew, swallow and strengthen his jaw and tongue. She said the motor planning part is there (yay!) but he's just weak (since he has extreme low tone, we knew that). At the end of the meeting Oliver woke up in a happy mood and hungry (rare for him on both counts) and we practiced chewing. He ate little bits of avocado, some cheese, and some cheerios. Then I quickly followed it up with a keto bottle to get his ratio right. The therapist was so pleased with how well he did and Oliver was pleased with himself too...at the next meal he refused the puree but when I put little bites of food in his mouth he happily chewed and swallowed. We just have to work on his endurance as he can only do a few small bites at a time and then often forgets to swallow it. The therapist has offered to take Oliver on rather than referring to someone else and we're very excited because she was great (and she will go to daycare to work with Oliver's teachers!).
We had a developmental evaluation, and ENT and a neuro appt last week so we're very sick of doctor visits for the moment!
Tuesday, February 15, 2011
Monday, February 14, 2011
A blog in photos: My Sundays on the Ketogenic Diet
Macademia Nut Pancakes: 100 calories each!
Keto Eggnog: Eggs, cream, applesauce and coconut oil
Keto Countertop: the site of many keto recipe concoctions
Keto Cabinet: we store all of Oliver's meds, foods and stuff here
Wednesday, February 9, 2011
Monday, February 7, 2011
The Seizure Monster
I know now why people call it the "seizure monster". After I became more familiar with IS and Epilepsy I joined some email groups and started reading blogs of other parents whose kids are similarly affected. They all referred to the "seizure monster". The idea of something taking over our children for periods of time and not allowing them to be themselves is terrifying. To look at Oliver's face while he is having seizures lately I know he is absolutely being attacked by a monster. His whole face distorts. These past few seizures this weekend are so much more intense that he's biting his own tongue each time, leaving bloody spots all over. His legs shake, his arms stiffen, he screeches and his eyes get wide. He looks like a monster. I know it's not him but the seizure that's causing the change but it is the scariest thing I've had to witness in my life. I think this means his seizures are changing and I'm not quite sure what that means for us....are the new seizure types going to be easier to control or more difficult?
We missed our neuro appt last Wednesday due to the blizzard (we were ready to shovel out and go but the hospital cancelled all appts for the day). So now we are waiting to hear a new date/time to go. The plan was to take videos in for the doctor to look at so he could see some of the new seizures we are witnessing. We are just hoping we can get in soon so we can form a new plan and get some guidance.
Oliver finished his clonazepam on Thursday night, and I'm hoping these seizures are withdrawal seizures and will settle down once the drug is out of his system...but of course we use the same drug as our rescue med for prolonged seizures and I've had to give him a full pill twice in the past 3 days. Also, if the seizures are changing then there may not be any reason to keep him on the Sabril since that's an IS drug.
I am getting closer to being at peace with having a child with such severe needs that he'll never feed himself, dress himself, hold his head up or crawl or communicate. As sad as that is, it's something I've been getting better at handling recently. But these seizures....I can't handle them. I just can't. They are so hard to watch. They are violent and painful and I cannot even begin to imagine how Oliver feels when they attack him. When Tobin gets scared at night and starts talking about monsters, I always reassure him that monster aren't real. They are only pretend and something people made up for movies and tv shows. But lately...I'm not so sure. There is a monster living inside of my baby and I want him to go away.
We missed our neuro appt last Wednesday due to the blizzard (we were ready to shovel out and go but the hospital cancelled all appts for the day). So now we are waiting to hear a new date/time to go. The plan was to take videos in for the doctor to look at so he could see some of the new seizures we are witnessing. We are just hoping we can get in soon so we can form a new plan and get some guidance.
Oliver finished his clonazepam on Thursday night, and I'm hoping these seizures are withdrawal seizures and will settle down once the drug is out of his system...but of course we use the same drug as our rescue med for prolonged seizures and I've had to give him a full pill twice in the past 3 days. Also, if the seizures are changing then there may not be any reason to keep him on the Sabril since that's an IS drug.
I am getting closer to being at peace with having a child with such severe needs that he'll never feed himself, dress himself, hold his head up or crawl or communicate. As sad as that is, it's something I've been getting better at handling recently. But these seizures....I can't handle them. I just can't. They are so hard to watch. They are violent and painful and I cannot even begin to imagine how Oliver feels when they attack him. When Tobin gets scared at night and starts talking about monsters, I always reassure him that monster aren't real. They are only pretend and something people made up for movies and tv shows. But lately...I'm not so sure. There is a monster living inside of my baby and I want him to go away.
Thursday, February 3, 2011
RSV, a blizzard and a pancake
So we've had some eventful weeks lately. After spiking a fever last Tuesday, Oliver was seen at the pediatrician the following day and tested positive for the respiratory virus, RSV. After 2 breathing treatments at the doc's office, his oxygen levels were still low so they sent him to the ER. Tobin and I arrived to meet up with Oliver and Jason just as Oliver was getting an iv put in. Of course, our super deep veined baby was unable to have an iv placed, so all that trauma for nothing. After a couple hours of hanging out at the hospital they decided to admit Oliver because he's so incredibly medically fragile that nobody wanted to dismiss him without giving him lots of treatments to help him fight the virus.
After 5 days in the hospital filled with Respiratory therapy every 4 hours, Oliver was deemed healthy enough to return home...much to the dismay of Tobin who thoroughly enjoyed sleeping in the big bed with mom or dad , riding the bus to and from the hospital, taking the train to school and getting happy meals at the McDonald's in the hospital basement every night.
We are surely glad that Oliver fought and won his RSV battle last week because this week we had Chicago's 3rd largest snowstorm in history. In a mere 24 hours we received 20 inches of snow and experienced thunder/lightning, 70 mph winds and pieces of people's homes blowing down the street. We all weathered the storm (oh how I love puns) very well and had plenty of food and entertainment to keep us content.
While we were hanging around the house I decided to try a new food texture for Oliver. Being on the keto diet is a challenge because I like all in one, pureed meals for Oliver so that I am sure he gets every bite on the right ratio. But I want to expand his horizons and try new foods as well to teach him to chew. I decided pancakes might be a good idea.... but how do you make pancakes without carbs? grind up macademia nuts (high in fat and perfect for the keto diet), mix with a bit of egg, some oil , and a couple drops of unsweetened applesauce...and you have a keto pancake!
Oliver did great! He chewed and swallowed and didn't choke once. Because he is getting over being sick he has not been in the mood for food lately so he only ate a little bit of the pancake (but it was just a snack sized portion so it was ok to not finish it). I am excited to come up with some more new food ideas for the little guy.
Oliver had his neuro checkup yesterday but it was cancelled due to the blizzard. we are hoping to reschedule soon so that we can show the neuro some videos of Oliver's latest new suspected seizure type , talk about weaning the Sabril now that we're almost off Clonazepam (last crumb of a pill to be administered tomorrow night!), and figure out plans for going forward. We are wondering if we should have an EEG and then decide if we want to continue the diet or move on to a steroid based on results.
He has a developmental pediatrician appointment tomorrow morning. It's part of the early intervention program and we're hoping it will help us secure more services and equipment for him. It will be hard to hear the blunt truth about how delayed Oliver is. While we see it and live it every day, it's still hard to have discussions about it...even with each other.
Last night I was rubbing Oliver's back and he was just cuddled in bed next to me. These are my favorite moments..when he is calm and comfortable and soothed by my touch. I had a moment of being simultaneously so angry and upset for all he doesn't have while being grateful and feeling so blessed for how lucky we are. I hope this means I am moving past the stage of angry and bitter about all of this and will start to become more upbeat and optimistic about just loving Oliver for who he is and what he can do, rather than who he could be, should be and for all the things he'll never do. It's my ultimate goal in life to be more accepting and courageous and I am working very hard to see only the beauty in our lives.
Today Oliver is 16 months old. He has lived 16 wonderful months, and has been fairly healthy during most of them. His hospital time is limited compared to many kids with CDG, his seizures are far fewer compared to many kids with epilepsy. Despite some GI discomfort and trouble, he is overall healthy and content and a very easy baby. He sleeps wonderfully (perhaps because of his medications, but we count it as a blessing anyway), he enjoys being on his playmat, he lights up at the sound of his brother's voice and at the scratchy feel of his father's scruffy face, he laughs when you clap his hands for him, he will fiercely hold a spoon even if he's only drinking a bottle for dinner, he tries SO hard to roll over and wonders why his leg won't follow his upper body and then looks so proud of himself when you give his leg the final push it needs, he is the best cuddler of any other kid his age and he coos , sings, hums and babbles when he wakes up from naps.
At the time Oliver was diagnosed with CDG, a month after the infantile spasms diagnosis...I was the only one in the hospital room to hear it. I had to tell my husband that our baby had CDG and tell him all of the issues he would face because of it, that the seizures would be hard to control, that Oliver might not develop past the stage of a newborn and that he could have other complications and organ trouble down the road. He looked at Oliver and back at me and he said " But he's still ours". And that he is.
After 5 days in the hospital filled with Respiratory therapy every 4 hours, Oliver was deemed healthy enough to return home...much to the dismay of Tobin who thoroughly enjoyed sleeping in the big bed with mom or dad , riding the bus to and from the hospital, taking the train to school and getting happy meals at the McDonald's in the hospital basement every night.
We are surely glad that Oliver fought and won his RSV battle last week because this week we had Chicago's 3rd largest snowstorm in history. In a mere 24 hours we received 20 inches of snow and experienced thunder/lightning, 70 mph winds and pieces of people's homes blowing down the street. We all weathered the storm (oh how I love puns) very well and had plenty of food and entertainment to keep us content.
While we were hanging around the house I decided to try a new food texture for Oliver. Being on the keto diet is a challenge because I like all in one, pureed meals for Oliver so that I am sure he gets every bite on the right ratio. But I want to expand his horizons and try new foods as well to teach him to chew. I decided pancakes might be a good idea.... but how do you make pancakes without carbs? grind up macademia nuts (high in fat and perfect for the keto diet), mix with a bit of egg, some oil , and a couple drops of unsweetened applesauce...and you have a keto pancake!
Oliver did great! He chewed and swallowed and didn't choke once. Because he is getting over being sick he has not been in the mood for food lately so he only ate a little bit of the pancake (but it was just a snack sized portion so it was ok to not finish it). I am excited to come up with some more new food ideas for the little guy.
Oliver had his neuro checkup yesterday but it was cancelled due to the blizzard. we are hoping to reschedule soon so that we can show the neuro some videos of Oliver's latest new suspected seizure type , talk about weaning the Sabril now that we're almost off Clonazepam (last crumb of a pill to be administered tomorrow night!), and figure out plans for going forward. We are wondering if we should have an EEG and then decide if we want to continue the diet or move on to a steroid based on results.
He has a developmental pediatrician appointment tomorrow morning. It's part of the early intervention program and we're hoping it will help us secure more services and equipment for him. It will be hard to hear the blunt truth about how delayed Oliver is. While we see it and live it every day, it's still hard to have discussions about it...even with each other.
Last night I was rubbing Oliver's back and he was just cuddled in bed next to me. These are my favorite moments..when he is calm and comfortable and soothed by my touch. I had a moment of being simultaneously so angry and upset for all he doesn't have while being grateful and feeling so blessed for how lucky we are. I hope this means I am moving past the stage of angry and bitter about all of this and will start to become more upbeat and optimistic about just loving Oliver for who he is and what he can do, rather than who he could be, should be and for all the things he'll never do. It's my ultimate goal in life to be more accepting and courageous and I am working very hard to see only the beauty in our lives.
Today Oliver is 16 months old. He has lived 16 wonderful months, and has been fairly healthy during most of them. His hospital time is limited compared to many kids with CDG, his seizures are far fewer compared to many kids with epilepsy. Despite some GI discomfort and trouble, he is overall healthy and content and a very easy baby. He sleeps wonderfully (perhaps because of his medications, but we count it as a blessing anyway), he enjoys being on his playmat, he lights up at the sound of his brother's voice and at the scratchy feel of his father's scruffy face, he laughs when you clap his hands for him, he will fiercely hold a spoon even if he's only drinking a bottle for dinner, he tries SO hard to roll over and wonders why his leg won't follow his upper body and then looks so proud of himself when you give his leg the final push it needs, he is the best cuddler of any other kid his age and he coos , sings, hums and babbles when he wakes up from naps.
At the time Oliver was diagnosed with CDG, a month after the infantile spasms diagnosis...I was the only one in the hospital room to hear it. I had to tell my husband that our baby had CDG and tell him all of the issues he would face because of it, that the seizures would be hard to control, that Oliver might not develop past the stage of a newborn and that he could have other complications and organ trouble down the road. He looked at Oliver and back at me and he said " But he's still ours". And that he is.
Tuesday, January 18, 2011
Going Tubing
Oliver will be the lucky recipient of a lovely pair of tubes for his ears in the near future. After his 15 month checkup with our pediatrician we all agreed that 5 ear infections in 4 months is just too many...and they'll keep coming if we don't take some action. We have the name of an ENT and will be trying to get Oliver in to see him as soon as possible so we can schedule the surgery. I have heard it's a minor thing and takes about 15 minutes to get the tubes in once he's out so it should just be a one day stop at the hospital.
The 15 month checkup went pretty well, we will return on Friday this week to get a shot for Oliver. We are going to try and get him caught up on some of his vaccinations. The doctor recommended prevnar or pentacel. The pentacel has pertussis vax in it and I'm scared of that one as it's contraindicated for seizures. Since Oliver's seizures are still uncontrolled I don't feel comfortable administering the one shot that might cause a seizure reaction. Oliver is growing well and is now 25 lbs and 31.5 inches tall. head circumference is up a bit from last time but not too much, or too little so we're feeling comfortable with that.
He continues to suffer from his GI issues and is very uncomfortable most days. We are at a loss with what to do about it but are going to try probiotics and then speak with his GI doctor again if that doesn't help.
Tobin had his 4 year checkup and is doing very well. He's now 43.5 inches tall and 45 lbs! He had a great birthday party this past weekend:
Tobin's Birthday Cake!
Oliver has also been having what we suspect to be tonic seizures and absence seizures. We're not sure of either but they look a lot like seizures to us. We'll bring them up with the neuro at our next meeting in February. After a tough week long fever and ear infection filled with seizures and miserable-ness, Oliver appears to be feeling better and we've resumed our Clonazepam wean. On Monday morning we dropped his 1/4 pill in the am and now he is only taking 1/4 pill at night. In a couple weeks we'll discuss his progress with the neuro and see if we're ready to drop the last bit of the pill. Then hopefully we'd be on the path to drop the Sabril/Vigab. I am so ready to see what he can do without this med. He has been on it for so long I want to know what he is like off of it. I just hope he's different, and in a good way.
In between screaming fits, Oliver found some time to play the piano:
Oliver's Concert Debut
We were very happy to have family visiting this past weekend. We spent a night out with friends and coworkers, slept in a hotel and spent the morning sleeping and eating room service and watching stupid movies on tv. Heaven!
The 15 month checkup went pretty well, we will return on Friday this week to get a shot for Oliver. We are going to try and get him caught up on some of his vaccinations. The doctor recommended prevnar or pentacel. The pentacel has pertussis vax in it and I'm scared of that one as it's contraindicated for seizures. Since Oliver's seizures are still uncontrolled I don't feel comfortable administering the one shot that might cause a seizure reaction. Oliver is growing well and is now 25 lbs and 31.5 inches tall. head circumference is up a bit from last time but not too much, or too little so we're feeling comfortable with that.
He continues to suffer from his GI issues and is very uncomfortable most days. We are at a loss with what to do about it but are going to try probiotics and then speak with his GI doctor again if that doesn't help.
Tobin had his 4 year checkup and is doing very well. He's now 43.5 inches tall and 45 lbs! He had a great birthday party this past weekend:
Tobin's Birthday Cake!
Oliver has also been having what we suspect to be tonic seizures and absence seizures. We're not sure of either but they look a lot like seizures to us. We'll bring them up with the neuro at our next meeting in February. After a tough week long fever and ear infection filled with seizures and miserable-ness, Oliver appears to be feeling better and we've resumed our Clonazepam wean. On Monday morning we dropped his 1/4 pill in the am and now he is only taking 1/4 pill at night. In a couple weeks we'll discuss his progress with the neuro and see if we're ready to drop the last bit of the pill. Then hopefully we'd be on the path to drop the Sabril/Vigab. I am so ready to see what he can do without this med. He has been on it for so long I want to know what he is like off of it. I just hope he's different, and in a good way.
In between screaming fits, Oliver found some time to play the piano:
Oliver's Concert Debut
We were very happy to have family visiting this past weekend. We spent a night out with friends and coworkers, slept in a hotel and spent the morning sleeping and eating room service and watching stupid movies on tv. Heaven!
Sunday, January 2, 2011
Happy New Year!
It's been awhile since we've posted, but not much to report. We had a lovely Christmas with family and everyone was fairly healthy and home so that was great for us. Tobin and Oliver both enjoyed the time with mom and dad and grandparents. Oliver is still very cranky most days. We are sort of at our wit's end and not really able to figure out what is causing him to be so miserable. We think most of the time it's gas pain and pain from his body trying to process all the fat in his diet. There might also be some reflux going on and we're going to investigate with the GI doc again to see if we should try a different reflux med or increase the dose of the one he's on. We are just trying very hard to get through each day without breaking down in complete exhaustion and frustration. When he's happy he talks and coos and laughs and it makes us feel so hopeful again.
Oliver's seizures have been getting worse. I've honestly just about given up hope on the diet. Despite a few 10 day stretches without seizures while he is sick we are still seeing 7-8 clusters of spasms per month and now we suspect he is having at least 2 other seizures types as we see a ton of staring episodes and some episodes of generalized shaking behavior. While the clusters used to be shorter (under 5 minutes 90% of the time since starting the diet), the last few he has had are back up to the hour long really awful ones. Since starting the diet he's been miserable on the GI front as he screams/arches/passes gas about 4 hours per day now. His body just cannot process the fat without lots of pain.We're not sure if he would have the same amount of seizures off the diet and if they are back to lasting an hour while on the diet, I just don't know what the diet is actually doing for him.
We tried to move to the next phase in our Clonazepam wean this weekend, by dropping his morning1/4 of a pill. He had two awful hour long seizures on Thursday and Friday and we decided to go back to the 1/4 pill in the morning and hold there for awhile before actually making the next drop. We will check in with his neuro on Monday to see what he advises but after seeing those nasty seizures we are just nervous to make that change. the 1/4 pill in the morning might not be doing anything and the seizures could be from something else like teething or an ear infection but we just don't feel comfortable dropping right now.
Thank you to everyone for all of the amazing holiday cards, they were so great to receive. We also really appreciate the generosity of our friends, family and readers of the blog who have taken the time to send us money for equipment for Oliver. We received an ipad from family for Christmas and we are looking forward to buying some educational apps for Oliver to use in his development.
Oliver's seizures have been getting worse. I've honestly just about given up hope on the diet. Despite a few 10 day stretches without seizures while he is sick we are still seeing 7-8 clusters of spasms per month and now we suspect he is having at least 2 other seizures types as we see a ton of staring episodes and some episodes of generalized shaking behavior. While the clusters used to be shorter (under 5 minutes 90% of the time since starting the diet), the last few he has had are back up to the hour long really awful ones. Since starting the diet he's been miserable on the GI front as he screams/arches/passes gas about 4 hours per day now. His body just cannot process the fat without lots of pain.We're not sure if he would have the same amount of seizures off the diet and if they are back to lasting an hour while on the diet, I just don't know what the diet is actually doing for him.
We tried to move to the next phase in our Clonazepam wean this weekend, by dropping his morning1/4 of a pill. He had two awful hour long seizures on Thursday and Friday and we decided to go back to the 1/4 pill in the morning and hold there for awhile before actually making the next drop. We will check in with his neuro on Monday to see what he advises but after seeing those nasty seizures we are just nervous to make that change. the 1/4 pill in the morning might not be doing anything and the seizures could be from something else like teething or an ear infection but we just don't feel comfortable dropping right now.
Thank you to everyone for all of the amazing holiday cards, they were so great to receive. We also really appreciate the generosity of our friends, family and readers of the blog who have taken the time to send us money for equipment for Oliver. We received an ipad from family for Christmas and we are looking forward to buying some educational apps for Oliver to use in his development.
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