We've had a lot going on in the past several weeks, hoping to figure out some answers for Oliver with his GI issues. After lots of phone calls and appts we finally got Oliver in for a gastric emptying study and determined he does have delayed gastric emptying. Basically the food sits in his stomach much longer than it should, and that is why he's never really hungry and also explains a lot of the reflux and GI pain he suffers. The full report is being sent to our GI doctor and then we'll find out next steps when we meet with him again.
Oliver also had an overnight 24 hour VEEG (Video EEG) this week. He did a great job but didn't have many of his staring spells while hooked up so I don't know that we'll actually know if those are seizures or not. He did have several of his small little random jerks and startles so it will be nice to see what types of seizures they are. He didn't have a big cluster while hooked up, which was expected because he never does...and because he was having a really good streak. Prior to today, his last big cluster was May 26th. Unfortunately, today the daycare called and said he was having a bad/long cluster and they were giving him Clonazepam to stop it. But this was his longest streak between big clusters since before he started the diet so that's good.
Oliver has been consistently rolling over just with his upper torso and always to his left side but it's a bit of progress. He also has been smiling a ton lately, which we're very grateful for. his bath chair arrived last night, woohoo! So we're excited to see if that helps him enjoy baths more. it will certainly make bath time easier on all of us.
Friday, June 10, 2011
Monday, May 16, 2011
next steps...
Oliver's seizures are increasing. We are holding our breath waiting to see if they will settle back down or if we will have to make a change to his diet or med plan. We finished the Vigabatrin on 4/28 and since then he has had 5 clusters of spasms, numerous random spasms and jerks at night while sleeping, staring spells before going to bed and some convulsing/shaking for 30 seconds or so randomly throughout the day. Aside from the big clusters of spasms, we're not sure if any of the other things are seizures or not but we're assuming they are.
Oliver did so great during his med wean but that last dosage drop seems to have really thrown him for a loop. I don't know if it is his brain protesting the last bit of the drug that we took away or something else. We have our next neuro appt June 15th and will be doing an overnight EEG just before that on June 7th. We will then plan our next step in the fight against seizures.
I got to a comfortable place. I was ok with his 3 clusters per month, happy to be taking steps toward more therapy and feeling confident in everything we could do to make him as happy and comfortable as possible.
Today I feel angry, frustrated and defeated. I feel bitter that I spent the weekend photographing and listing all of the baby gear and toddler gear for sale. Items that Oliver should have used like his exersaucer, bumbo seat and baby carrier that couldn't be used because he lacks head control. Tobin's old push car with a handle that we used to take him out for walks with. Oliver was supposed to be riding around in that this summer. He was also supposed to get Tobin's tricycle now that Tobin has outgrown it. All of those items were sitting in storage, taunting me every time I passed by them. I know it's healthier for me to get them out of the house (and maybe make a few bucks towards Oliver's savings account) but I can't help but think of the life that we imagined we'd live. Instead, we received a parking placard for our rearview mirror, to allow us to park in the handicapped spots when Oliver is in the car with us. It's official, the State of Illinois has granted our son "disabled" status. While the placard will certainly make it easier for us to get him out of the car and into his stroller or wheelchair, it is a concrete reminder that Oliver really isn't developing at all on the physical side. He's over 19 months old now and still can't hold his head up, sit, or roll over. Increased seizures on top of that are just not what we need right now.
We have a few options at this point. We can give his brain more time off the drug to see if it will settle down in the coming weeks, we can go back up to the small nightly dose of Sabril we were on before we lost control or we can increase his diet ratio. There are drawbacks to all of these options and I'm not sure which choice will be the right choice.
Once again I find myself angry that no one has answers for us, not even the experts. Epilepsy is totally unlike any other disorder because the brain is such a mystery. There isn't one solution for every situation. there are dozens, maybe hundreds of options/med combos/diet tweaks etc. It is mentally draining spending your whole day going through every little thing your son has eaten, drank, the time he ate or drank, what time of day he had his supplements, etc etc etc. I am tired. I am over it. There is still a long road ahead of us and some days I just don't have the strength to keep going. It's a lot of pressure as a parent to try and be your child's doctor, nurse, therapist, cheerleader, chef, teacher...when all you want most is to just be his mom.
Oliver did so great during his med wean but that last dosage drop seems to have really thrown him for a loop. I don't know if it is his brain protesting the last bit of the drug that we took away or something else. We have our next neuro appt June 15th and will be doing an overnight EEG just before that on June 7th. We will then plan our next step in the fight against seizures.
I got to a comfortable place. I was ok with his 3 clusters per month, happy to be taking steps toward more therapy and feeling confident in everything we could do to make him as happy and comfortable as possible.
Today I feel angry, frustrated and defeated. I feel bitter that I spent the weekend photographing and listing all of the baby gear and toddler gear for sale. Items that Oliver should have used like his exersaucer, bumbo seat and baby carrier that couldn't be used because he lacks head control. Tobin's old push car with a handle that we used to take him out for walks with. Oliver was supposed to be riding around in that this summer. He was also supposed to get Tobin's tricycle now that Tobin has outgrown it. All of those items were sitting in storage, taunting me every time I passed by them. I know it's healthier for me to get them out of the house (and maybe make a few bucks towards Oliver's savings account) but I can't help but think of the life that we imagined we'd live. Instead, we received a parking placard for our rearview mirror, to allow us to park in the handicapped spots when Oliver is in the car with us. It's official, the State of Illinois has granted our son "disabled" status. While the placard will certainly make it easier for us to get him out of the car and into his stroller or wheelchair, it is a concrete reminder that Oliver really isn't developing at all on the physical side. He's over 19 months old now and still can't hold his head up, sit, or roll over. Increased seizures on top of that are just not what we need right now.
We have a few options at this point. We can give his brain more time off the drug to see if it will settle down in the coming weeks, we can go back up to the small nightly dose of Sabril we were on before we lost control or we can increase his diet ratio. There are drawbacks to all of these options and I'm not sure which choice will be the right choice.
Once again I find myself angry that no one has answers for us, not even the experts. Epilepsy is totally unlike any other disorder because the brain is such a mystery. There isn't one solution for every situation. there are dozens, maybe hundreds of options/med combos/diet tweaks etc. It is mentally draining spending your whole day going through every little thing your son has eaten, drank, the time he ate or drank, what time of day he had his supplements, etc etc etc. I am tired. I am over it. There is still a long road ahead of us and some days I just don't have the strength to keep going. It's a lot of pressure as a parent to try and be your child's doctor, nurse, therapist, cheerleader, chef, teacher...when all you want most is to just be his mom.
Friday, May 6, 2011
Keto Appt
We had our 3 month keto appt yesterday. No changes to the diet for right now. Oliver had blood taken (he was not a fan of the process) and we'll know in about a week if he has any levels that are too high or low or of concern. He also received another vaccination and we've been told after his chicken pox vaccine in a month he'll be caught up on all the big stuff (pheww!). He slept through that shot, how nice!
Not much else going on, knock on wood but we're fairly stable with the same level of seizure activity, development, etc. Just trying to live life and enjoy some of the increased sunshine of late. It's wonderful!
Not much else going on, knock on wood but we're fairly stable with the same level of seizure activity, development, etc. Just trying to live life and enjoy some of the increased sunshine of late. It's wonderful!
Monday, May 2, 2011
May!
We made it through the month of April with only 3 clusters of seizures to record...but we were very nervous we wouldn't be able to do so. Oliver's last cluster was the 19th of April and we thought his clusters were getting closer together again. On 4/25 we saw single spasms throughout the morning so I gave him his first bit of Clonazepam in over 3 months. Just a 1/4 of a pill to see if I could head off any impending cluster. It seemed to work because Oliver did not have any clusters that day or during the rest of April!
He has , however, started May out with a bang. I woke up last night at 1am and I could hear Oliver yelling during intervals up in his bedroom. I finally came out of my sleepy fog enough to realize he was having spasms and woke Jason up to see if he though it sounded like a seizure. I don't know how long he'd been seizing and I feel awful that I may have left him up there seizing for more than a few minutes. The spasms were mild and not as close together when we brought him downstairs so I can only assume he had already been seizing for a good 5-10 minutes. We were nervous it had been going on for awhile so we gave him half a Clonazepam to settle him down and he eventually did , and was able to go right back to sleep immediately. He slept in our bed all night, because we were both so nervous about not hearing him. Luckily, Tobin didn't make his usual trip down to our bed!
I keep hoping this current bit of seizure activity is related to the end of the Vigabatrin wean and that Oliver will settle down in time and continue to see great seizure control in the coming months.
He's had a very rough weekend, lots of fussiness and crying (hopefully wean related) so we are all a bit tired today. The diet continues to be going well and we're even getting a lot of his therapies in now that he's more awake during the day.
He has , however, started May out with a bang. I woke up last night at 1am and I could hear Oliver yelling during intervals up in his bedroom. I finally came out of my sleepy fog enough to realize he was having spasms and woke Jason up to see if he though it sounded like a seizure. I don't know how long he'd been seizing and I feel awful that I may have left him up there seizing for more than a few minutes. The spasms were mild and not as close together when we brought him downstairs so I can only assume he had already been seizing for a good 5-10 minutes. We were nervous it had been going on for awhile so we gave him half a Clonazepam to settle him down and he eventually did , and was able to go right back to sleep immediately. He slept in our bed all night, because we were both so nervous about not hearing him. Luckily, Tobin didn't make his usual trip down to our bed!
I keep hoping this current bit of seizure activity is related to the end of the Vigabatrin wean and that Oliver will settle down in time and continue to see great seizure control in the coming months.
He's had a very rough weekend, lots of fussiness and crying (hopefully wean related) so we are all a bit tired today. The diet continues to be going well and we're even getting a lot of his therapies in now that he's more awake during the day.
Thursday, April 21, 2011
Keto Tips
Someone on our keto diet group mailing list is assembling a list of tips for new parents starting the diet. She goes to Johns Hopkins and is acting as a parent advocate for other parents who are beginning their keto journey. I emailed her a list of my tips this morning to add to her handout for new parents but I thought I'd post them here as well for anyone about to embark on the wild roller coaster that is the keto diet:
My tips:
1. Supplies:
- masking tape and sharpies (for labeling pre-made meals quickly and easily).
- Gerber bowls: http://www.amazon.com/NUK-Gerber-Bunch---Bowls-Colors/dp/B000RFC3BM/ref=sr_1_1?ie=UTF8&qid=1298911571&sr=8-1
- good spoon shaped spatulas (I got mine at home goods)
- 2oz and 4 oz portion cups from costco or restaurant supply store
2. Foods:
- Don't make it a huge challenge for yourself the first weeks by trying tons of different recipes and experimenting. choose 2 simple dishes for each meal and alternate between them to first get your child into a good consistent level of ketosis and know that there are only a few ingredients that can be affecting the diet at first (keep it simple with whole foods, real fruits and veggies and only 4-5 ingredients per meal at most).
- Don't be afraid to give yourself a keto cooking break once in awhile and just use the ketocal formula or simple meals like eggnog. If you're rushing or going out to eat and you want to make it easier on yourself, these are great quick solutions.
- cook in bulk on the weekend. We make all our meals and elements of meals on the weekend so during the week we only spend about 10 minutes per day doing keto assembly (or weighing out fresh cream for the bottles,e tc).
3. General tips when starting the diet:
- Set a goal for yourself that is realistic. Don't expect "seizure freedom" from Day1 and don't be surprised if things get worse before they get better...treat the diet like a med in that sometimes you have to titrate up to the right "level" before you see good results.
- Don't make your goals related to just seizures...include things like increased awareness, development, attitude, etc and the ability to wean off of 1 or all of your seizure meds as a goal as well. This way you can still achieve something even if you don't get seizure freedom right away.
And my biggest tip of all: DON'T CARRY THE KETO WEIGHT ON YOUR SHOULDERS ALONE! Enlist a partner, husband, wife, mother, brother, sister, neighbor or cousin. Get 1-2 other people educated on the diet and have them ready to pitch in once in awhile with the cooking, meal prep, recipe invention etc. It's so helpful if you come down with the flu or have an off week or if you're just so sick and tired of weighing out cream and oil and butter to be able to take a break.
My tips:
1. Supplies:
- masking tape and sharpies (for labeling pre-made meals quickly and easily).
- Gerber bowls: http://www.amazon.com/NUK-
- good spoon shaped spatulas (I got mine at home goods)
- 2oz and 4 oz portion cups from costco or restaurant supply store
2. Foods:
- Don't make it a huge challenge for yourself the first weeks by trying tons of different recipes and experimenting. choose 2 simple dishes for each meal and alternate between them to first get your child into a good consistent level of ketosis and know that there are only a few ingredients that can be affecting the diet at first (keep it simple with whole foods, real fruits and veggies and only 4-5 ingredients per meal at most).
- Don't be afraid to give yourself a keto cooking break once in awhile and just use the ketocal formula or simple meals like eggnog. If you're rushing or going out to eat and you want to make it easier on yourself, these are great quick solutions.
- cook in bulk on the weekend. We make all our meals and elements of meals on the weekend so during the week we only spend about 10 minutes per day doing keto assembly (or weighing out fresh cream for the bottles,e tc).
3. General tips when starting the diet:
- Set a goal for yourself that is realistic. Don't expect "seizure freedom" from Day1 and don't be surprised if things get worse before they get better...treat the diet like a med in that sometimes you have to titrate up to the right "level" before you see good results.
- Don't make your goals related to just seizures...include things like increased awareness, development, attitude, etc and the ability to wean off of 1 or all of your seizure meds as a goal as well. This way you can still achieve something even if you don't get seizure freedom right away.
And my biggest tip of all: DON'T CARRY THE KETO WEIGHT ON YOUR SHOULDERS ALONE! Enlist a partner, husband, wife, mother, brother, sister, neighbor or cousin. Get 1-2 other people educated on the diet and have them ready to pitch in once in awhile with the cooking, meal prep, recipe invention etc. It's so helpful if you come down with the flu or have an off week or if you're just so sick and tired of weighing out cream and oil and butter to be able to take a break.
Sunday, April 17, 2011
Thursday, April 14, 2011
Pictures soon, I promise!
We have the ankle braces and the vest! Insurance won't cover the hip helpers so the rehab clinic gave us the measurements so we can order them ourselves out of pocket. They are essentially stitched up shiny bike shorts and only cost about $15 so it's no big deal for us to buy a couple pairs on our own...
I will get some pictures of Oliver in his new kicks as soon as we buy him some big boy shoes this weekend and then I will post...
Today we had our stander fitting at RIC. We're getting this stander: Prime Engineering Super Stand in bright shiny candy apple red! The diva in me wanted the violet purple...the mom in me thought blue was more appropriate for a boy...and the mother to a special needs child with vision issues decided that bright red is best since it's the first color babies can see beyond black and white. It will probably be a long time before we receive it but I'm very excited!
Oliver was very fussy and cranky due to some GI discomfort when they placed him in the stander, so I spent most of his first time standing trying to soothe and comfort him...it was probably a good distraction because it brought me to tears to see him standing. I was so happy to see him standing and so sad at the same time that he even needs a stander. Very bittersweet moment. Luckily Oliver's crying and distress served as a great distraction and didn't allow me to wallow in my own misery. Smart boy!
We also test drove some chairs and will be placing an order through EI for a feeding/therapy/general hanging out chair very soon.
Oliver's ear infection is clearing up and he has been having a pretty good week aside from a seizure on Tuesday.
I will get some pictures of Oliver in his new kicks as soon as we buy him some big boy shoes this weekend and then I will post...
Today we had our stander fitting at RIC. We're getting this stander: Prime Engineering Super Stand in bright shiny candy apple red! The diva in me wanted the violet purple...the mom in me thought blue was more appropriate for a boy...and the mother to a special needs child with vision issues decided that bright red is best since it's the first color babies can see beyond black and white. It will probably be a long time before we receive it but I'm very excited!
Oliver was very fussy and cranky due to some GI discomfort when they placed him in the stander, so I spent most of his first time standing trying to soothe and comfort him...it was probably a good distraction because it brought me to tears to see him standing. I was so happy to see him standing and so sad at the same time that he even needs a stander. Very bittersweet moment. Luckily Oliver's crying and distress served as a great distraction and didn't allow me to wallow in my own misery. Smart boy!
We also test drove some chairs and will be placing an order through EI for a feeding/therapy/general hanging out chair very soon.
Oliver's ear infection is clearing up and he has been having a pretty good week aside from a seizure on Tuesday.
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