We've switched Yusef's meds now. We're weaning off the Zonegram and have switched to valproic acid. The plan is to do another round of ACTH if the valproic acid doesn't reduce his seizures.
I have no problem with doing another round of ACTH. Yes there are side effects which include one cranky baby for six weeks. The ACTH helped Yusef so much the first time but now the seizure have slowly creeped into daily life again. The hope is the second time they will stop them completely. Obliterate them. Buh Bye.
So far the valproic acid has reduced them, but they're still around. Unless there's some miraculous turn of events in the next week and a half (I'm supposed to check in with the PA after this time), we'll see just a reduction of the seizures. They'll still be there. Lurking around in my little guy's brain. I want them gone and plan on being extremely firm about doing the ACTH again when we check back in.
If we do go with the ACTH and that doesn't work the second time, then we'll start the ketogenic diet. I've like the idea of this diet for quite some time, but it does require a 5 day hospital stay in it's start, and is not nutritionally complete which means drawing labs regularly to check electrolytes. It also is usually tried for 2-3 months before it is deemed either a success or a failure. So in other words, if it doesn't work then we'll be looking at that time wasted when we could have been doing the ACTH which has helped in the past.
So I'll stick with what I know will work at this point.
We also have an appointment next week with another neurologist to get a second opinion. If I really like this guy, I might take our care there since I haven't been that happy with the way our care has progressed thus far. I know Dr.'s aren't generally keen on stepping on each other's feet and "stealing" away patients from one another, so we'll see what he says.
I have to do what's best for Yusef.
In other health care news, Zainah had a follow up chest xray for the "spots" on her lung. It looked clear, but to be safe we're doing another CT tomorrow. So throw up a prayer to Allah, God, Jesus, Krishna, or the diety of your choice, or just send some positive thoughts our way that tomorrow goes well.
Showing posts with label infantile spasms. Show all posts
Showing posts with label infantile spasms. Show all posts
Thursday, March 18, 2010
Thursday, March 4, 2010
He's One Now But I Don't Feel Like Celebrating
Yusef turned one this past week. It’s been an extremely emotional time for me and I admit I’ve been depressed to the point of tears at times. I sometimes feel that I only post negative things on this blog, a fact that I hate. I also want to be an advocate for individuals with Down syndrome and I never want anyone visiting this blog to get the wrong idea. I don’t want to propogate the stereotype of children with DS suffering or their families being paralyzed with grief and medical issues. At the same time, I can’t just write out a lie.
This year has been difficult. However, much of the difficulties have had nothing to do with Ds, but rather his debilitating form of epilepsy called infantile spasms that have wreaked havoc on my every waking hour for the last eight months.
Children with Down syndrome no more likely to suffer from seizures than their typical peers. However, for those children that do have a seizure disorder, the likelihood of infantile spams being the type of epilepic disorder is much higher in children with DS than in the general population. Indeed, one of the risk factors for infantile spasms is chromosomal abnormalities.
The information out there on the internet regarding infantile spasms is incredibly scary and depressing. They are very difficult seizures to control and many of the articles will say that the prognosis is poor with this type of epilepsy. This means that most cases are intractable to current medicines and treatments and most children will have permanent developmental and cognitive delays. Of course, then I have to factor in Down syndrome, and well, I just feel bleak about my child's future and level of functioning he will be able to obtain.
While we have seen a reduction in seizure activity after our course of ACTH, and an increase in development, my Yusef has not had anywhere close to a total halt to these seizures. It’s very common to see him have at least a couple “spasms” i.e. seizures every day. Usually with no warning. If he happens to be sitting up in his excersaucer, he’ll have what is called a head drop meaning he loses all control of the muscles in his head and trunk and he’ll literally do a face plant on top of his tray and any toys that might be sitting there. This is, to say the least, traumatic to everyone involved.
My son is extremely delayed at this point. At one year old I see other babies with DS sitting, creeping, some even crawling, starting to talk or sign. Yusef is nowhere near sitting. He still doesn’t seem to socialize and smile as much as I would like to see. He’s only recently started rolling around consistently. I know people will say he’ll reach his milestones in his own time, but this is ridiculous. And so now I’m angry.
I’m angry at the neurologist for not being nearly aggressive enough with this. He just seems to blow everything off and want to continue the current treatment plan that we’re on which is not working! He is taking a wait and see approach and this is my child’s life, his future we’re talking about.
So my husband and I have talked about taking him to somewhere out of community to get another opinion, perhaps to Kansas City. As it turns out there is a second, brand new, pediatric neurologist in our community now! Our primary care pedi is in the process of setting up an appointment with him now and I should hear from them tomorrow.
There is still some hope. There are a couple different options that are promising. One is a med called Vigabatrin and the other is the ketogenic diet. Neither of which has our neurologist even mentioned. Not once. It took 5 months for him to even be on board with the ACTH which is a first line treatment, the gold standard really. I am done with this guy.
I’m pissed at myself for letting things go on for this long. I just kept thinking it would get better. The Zonegram helped which gave me hope. The ACTH helped quite a bit more which gave me more hope. But neither are enough. I want these seizures gone. Completely. And if I can’t have that, then at least I want the peace of mind in knowing that I did absolutely everything possible and that it is simply out of my hands.
This year has been difficult. However, much of the difficulties have had nothing to do with Ds, but rather his debilitating form of epilepsy called infantile spasms that have wreaked havoc on my every waking hour for the last eight months.
Children with Down syndrome no more likely to suffer from seizures than their typical peers. However, for those children that do have a seizure disorder, the likelihood of infantile spams being the type of epilepic disorder is much higher in children with DS than in the general population. Indeed, one of the risk factors for infantile spasms is chromosomal abnormalities.
The information out there on the internet regarding infantile spasms is incredibly scary and depressing. They are very difficult seizures to control and many of the articles will say that the prognosis is poor with this type of epilepsy. This means that most cases are intractable to current medicines and treatments and most children will have permanent developmental and cognitive delays. Of course, then I have to factor in Down syndrome, and well, I just feel bleak about my child's future and level of functioning he will be able to obtain.
While we have seen a reduction in seizure activity after our course of ACTH, and an increase in development, my Yusef has not had anywhere close to a total halt to these seizures. It’s very common to see him have at least a couple “spasms” i.e. seizures every day. Usually with no warning. If he happens to be sitting up in his excersaucer, he’ll have what is called a head drop meaning he loses all control of the muscles in his head and trunk and he’ll literally do a face plant on top of his tray and any toys that might be sitting there. This is, to say the least, traumatic to everyone involved.
My son is extremely delayed at this point. At one year old I see other babies with DS sitting, creeping, some even crawling, starting to talk or sign. Yusef is nowhere near sitting. He still doesn’t seem to socialize and smile as much as I would like to see. He’s only recently started rolling around consistently. I know people will say he’ll reach his milestones in his own time, but this is ridiculous. And so now I’m angry.
I’m angry at the neurologist for not being nearly aggressive enough with this. He just seems to blow everything off and want to continue the current treatment plan that we’re on which is not working! He is taking a wait and see approach and this is my child’s life, his future we’re talking about.
So my husband and I have talked about taking him to somewhere out of community to get another opinion, perhaps to Kansas City. As it turns out there is a second, brand new, pediatric neurologist in our community now! Our primary care pedi is in the process of setting up an appointment with him now and I should hear from them tomorrow.
There is still some hope. There are a couple different options that are promising. One is a med called Vigabatrin and the other is the ketogenic diet. Neither of which has our neurologist even mentioned. Not once. It took 5 months for him to even be on board with the ACTH which is a first line treatment, the gold standard really. I am done with this guy.
I’m pissed at myself for letting things go on for this long. I just kept thinking it would get better. The Zonegram helped which gave me hope. The ACTH helped quite a bit more which gave me more hope. But neither are enough. I want these seizures gone. Completely. And if I can’t have that, then at least I want the peace of mind in knowing that I did absolutely everything possible and that it is simply out of my hands.
Monday, February 1, 2010
Back to ourselves
Just a quick note and update. We've had our follow up EEG and it is still showing some seizure activity, but it looks "a hundred times better". We've not been able to actually see any of the seizures since the ACTH. While things still aren't perfect (whatever that is), I'm thrilled that I've got my little man back. He seems to have awoken from a daze and is interacting with all of us. We're having so much fun!
Back to the neurologist in 2 months for a follow up.
I'll post some more pictures in the near future, I promise. I've been a horribly lazy blogger lately.
Back to the neurologist in 2 months for a follow up.
I'll post some more pictures in the near future, I promise. I've been a horribly lazy blogger lately.
Tuesday, December 29, 2009
Finishing up the ACTH
We're winding down on the ACTH treatments now. I'm giving the injections every other day this week and Thursday is his last shot!
For much of the course, we've seen really no improvement. In fact, for much of the last 6 weeks, Yusef's seizures and symptoms have actually been worse.
However, this week he's suddenly come out of his fog again and is smiling, cooiing and laughing! Yes, for the first time in his life I've heard his laugh! I can't tell you how happy that makes me; How my heart soars with pride, my own face reflecting his joy.
Right now, I'm cautiously optimistic...
For much of the course, we've seen really no improvement. In fact, for much of the last 6 weeks, Yusef's seizures and symptoms have actually been worse.
However, this week he's suddenly come out of his fog again and is smiling, cooiing and laughing! Yes, for the first time in his life I've heard his laugh! I can't tell you how happy that makes me; How my heart soars with pride, my own face reflecting his joy.
Right now, I'm cautiously optimistic...
Sunday, December 6, 2009
Starting ACTH
It's been a while since I've updated this blog and alot has happened.
The meds that Yusef was on for the infantile spasms just simply aren't working. His last two EEG's continued to show frequent seizure activity. Developmentally we are at a total standstill which is the most frustrating thing that has gone on. I'd say my 10 month old is still at a 3 month level, even regressing since this all began 6 months ago.
So two and a half weeks ago, we started the ACTH treatments. ACTH or adrenocorticotropic hormone is a treatment which is sometimes effectivce with IS for reasons not understood by medical science. The cost of the six week treatment is well over 100,000 dollars. No that is not a typo. It's craaazy. Apparently, Questor is the only drug company that manufactures it, and since it used to treat a rare condition, they can charge whatever they want! Well yay, for them, and thank God, thank God, we have decent prescription coverage.
These two vials costs $93,000, and there's more to come
ACTH is still considered the gold standard in treating IS, but there are still some treatment options that I'm quite interested in, namely the ketogenic diet which has shown to be as effective in some studies. There is also a drug called vigabatrin. I'm also seriously thinking about taking him to Children's Mercy in KC to get a second opinion as I fell like this Dr. has been dragging his feet with this. This has gone on now for 5 months! Why did we drag our feet so long before starting the ACTH and why did he never mention this ketogenic diet? I'm still learning about this, but I know that it will be the next step if this treatment doesn't work. I feel in my heart, it's not going to. And now I feel trapped since we're right in the middle of the ACTH and I feel guilty because I should have taken him for another opinion sooner when we weren't seeing results earlier in this journey. Then again, this could all be the angry rantings of a desperate mother.
The meds that Yusef was on for the infantile spasms just simply aren't working. His last two EEG's continued to show frequent seizure activity. Developmentally we are at a total standstill which is the most frustrating thing that has gone on. I'd say my 10 month old is still at a 3 month level, even regressing since this all began 6 months ago.
So two and a half weeks ago, we started the ACTH treatments. ACTH or adrenocorticotropic hormone is a treatment which is sometimes effectivce with IS for reasons not understood by medical science. The cost of the six week treatment is well over 100,000 dollars. No that is not a typo. It's craaazy. Apparently, Questor is the only drug company that manufactures it, and since it used to treat a rare condition, they can charge whatever they want! Well yay, for them, and thank God, thank God, we have decent prescription coverage.
These two vials costs $93,000, and there's more to come
It's quite stressfull to even have these vials in my house. I'm deathly afraid there's going to be a fire or something. Of course, even more stressfull is jabbing my sweet boy in the leg with a needle every morning.
The treatment is a six week course. We started at the highest dose 3 weeks ago, and are tapering down each week. The first week Yusef did great. He immediately became more alert and began cooing and gooing like never before. He had a light in his eye. He looked us in the face and truly studied us for what seemed like the first time. Then last week the insidious seizures started again, and he again became like a zombie, spaced out, seemingly oblivious to the world. Since then, the seizures have come and gone. One day, I'll see seizures, and the next he'll be back again, alert. He still hasn't smiled for what has seems like months. He's still never laughed.
ACTH is still considered the gold standard in treating IS, but there are still some treatment options that I'm quite interested in, namely the ketogenic diet which has shown to be as effective in some studies. There is also a drug called vigabatrin. I'm also seriously thinking about taking him to Children's Mercy in KC to get a second opinion as I fell like this Dr. has been dragging his feet with this. This has gone on now for 5 months! Why did we drag our feet so long before starting the ACTH and why did he never mention this ketogenic diet? I'm still learning about this, but I know that it will be the next step if this treatment doesn't work. I feel in my heart, it's not going to. And now I feel trapped since we're right in the middle of the ACTH and I feel guilty because I should have taken him for another opinion sooner when we weren't seeing results earlier in this journey. Then again, this could all be the angry rantings of a desperate mother.
This has been a heartwrenching experience and it isn't over yet. In some ways it feels like getting the diagnosis all over again, the same fears and grief, and in between glimmers of hope.
Friday, October 9, 2009
First the Good News
The Good News:
Somaya is doing much better. We spent 6 hours in the ER Friday night getting IV antibiotics. They also gave her some morphine because she was in so much pain and Tylenol for the fever. The doctor said she could be admitted to give her another dose of antibiotics in 24 hours or we could go home with our current oral antibiotics and some Lortab. I didn't want to spend any more time in the hospital so I opted for going home and thankfully she's doing fine now--back to her old feisty self.
The Bad News:
Yusef's EEG still shows frequent seizure activity. We saw the neurologist on Monday and he thinks it's definitely a good sign that we're not seeing clinical seizures so he wants to give it 6 more weeks and redo the EEG. If at this time, Yusef is still showing seizure activity, we'll go ahead with the ACTH treatments. This also explains why we're not seeing any progression in his milestones and the limited interaction.
ACTH (adrenocorticotropic hormone) is generally a very effective treatment for infantile spasms. However, it comes with a whole host of scary side effects. Everything from irritability, to gastrointestinal bleeding, to sepsis.
The Dr. said these would be given weekly, and that I could do these at home. He knows I'm a nurse and I have worked with him before in the professional setting. I'm assuming Yusef will need a PICC line, which again, I've cared for many, many times.
Kudos to all you Mom's out there who've had to care for your little ones at home with NO medical training. I remember when Zainah had her Hickman and later a PICC line, how stressful it was caring for them, even with lots and lots of experience. I can't even imagine how intimidating it would be for someone learning everything for the first time.
Part of me just wants to get this over with and go ahead with the treatments. I want to see my my boy advancing and working on all his milestones again. Sigh. Patience is a virtue I guess. . .
Oh yeah, and now Zainah is sick with stomach cramps, vomiting, and fevers. Blah. I mean, can we catch a break with these kids. Sometimes, you just gotta laugh so you don't cry.
Somaya is doing much better. We spent 6 hours in the ER Friday night getting IV antibiotics. They also gave her some morphine because she was in so much pain and Tylenol for the fever. The doctor said she could be admitted to give her another dose of antibiotics in 24 hours or we could go home with our current oral antibiotics and some Lortab. I didn't want to spend any more time in the hospital so I opted for going home and thankfully she's doing fine now--back to her old feisty self.
The Bad News:
Yusef's EEG still shows frequent seizure activity. We saw the neurologist on Monday and he thinks it's definitely a good sign that we're not seeing clinical seizures so he wants to give it 6 more weeks and redo the EEG. If at this time, Yusef is still showing seizure activity, we'll go ahead with the ACTH treatments. This also explains why we're not seeing any progression in his milestones and the limited interaction.
ACTH (adrenocorticotropic hormone) is generally a very effective treatment for infantile spasms. However, it comes with a whole host of scary side effects. Everything from irritability, to gastrointestinal bleeding, to sepsis.
The Dr. said these would be given weekly, and that I could do these at home. He knows I'm a nurse and I have worked with him before in the professional setting. I'm assuming Yusef will need a PICC line, which again, I've cared for many, many times.
Kudos to all you Mom's out there who've had to care for your little ones at home with NO medical training. I remember when Zainah had her Hickman and later a PICC line, how stressful it was caring for them, even with lots and lots of experience. I can't even imagine how intimidating it would be for someone learning everything for the first time.
Part of me just wants to get this over with and go ahead with the treatments. I want to see my my boy advancing and working on all his milestones again. Sigh. Patience is a virtue I guess. . .
Oh yeah, and now Zainah is sick with stomach cramps, vomiting, and fevers. Blah. I mean, can we catch a break with these kids. Sometimes, you just gotta laugh so you don't cry.
Friday, October 2, 2009
Update on Yusef's Infantile Spasms
It occured to me that I never really gave an update on Yusef's progress on his meds. I'm happy to say that the second med we started seems to have done the trick and he's been seizure free for the last several weeks. He's on Kepra 3 times a day and Zonegram twice a day.
I have noticed that he seems to be a tad more sleepy since this all started and he hasn't progressed at all developmentally. From what I've learned from other mom's this is to be expected and often happens with the IS. In fact, I think it's safe to say, he's even regressed on a lot of his gross motor milestones. He won't roll over like he was before, and rarely ever smiles. He seems to avoid social contact and sometimes refuses to even look at us and interacts rarely. Our therapist seems to think it's a sensory thing caused from the seizures and meds. However, just the other night I was thrilled when I got several sweet smiles out of him!
We've got an appointment Monday with the neurologist and a follow-up EEG--I'll definitely bounce it off of him and see what he says.
Hopefully we'll be actually be able to make it to the appointment since big sis Somaya is fairly ill and might have to be admitted into the hospital for IV anitbiotics. She's suffering from a UTI that doesn't seem to be responding to the meds. Her pedi thinks there is a good possibility it's turned into a kidney infection in which case she'll have to be admitted. We do have vesicoureteral reflux in the females in our family. It's essentially what happens when the urine backs back up from the bladder up the ureter and into the kidney. It can cause chronic infections. Zainah and I both had it. Somaya has never been screened for it since she's never had a UTI before. Right now we're just waiting to see if her fever returns tonight and if it does we're to take her to the ER. Her last dose of ibuprofen was at 2:00 and it's now 6:30 so we'll see what happens here in the next few hours.
Oh yeah, our buddy walk is tomorrow and unless Somaya makes some type of miraculous recovery, I doubt we'll be able to go. I'm really bummed about this. I was so excited. It seems as if every time our local DS chapter has some big event, one of the kids is sick or there's something else going on. Sigh. I dunno, maybe Somaya will be okay. That's what I'm praying for right now--and my sanity--it's been a rough couple of days...
I have noticed that he seems to be a tad more sleepy since this all started and he hasn't progressed at all developmentally. From what I've learned from other mom's this is to be expected and often happens with the IS. In fact, I think it's safe to say, he's even regressed on a lot of his gross motor milestones. He won't roll over like he was before, and rarely ever smiles. He seems to avoid social contact and sometimes refuses to even look at us and interacts rarely. Our therapist seems to think it's a sensory thing caused from the seizures and meds. However, just the other night I was thrilled when I got several sweet smiles out of him!
We've got an appointment Monday with the neurologist and a follow-up EEG--I'll definitely bounce it off of him and see what he says.
Hopefully we'll be actually be able to make it to the appointment since big sis Somaya is fairly ill and might have to be admitted into the hospital for IV anitbiotics. She's suffering from a UTI that doesn't seem to be responding to the meds. Her pedi thinks there is a good possibility it's turned into a kidney infection in which case she'll have to be admitted. We do have vesicoureteral reflux in the females in our family. It's essentially what happens when the urine backs back up from the bladder up the ureter and into the kidney. It can cause chronic infections. Zainah and I both had it. Somaya has never been screened for it since she's never had a UTI before. Right now we're just waiting to see if her fever returns tonight and if it does we're to take her to the ER. Her last dose of ibuprofen was at 2:00 and it's now 6:30 so we'll see what happens here in the next few hours.
Oh yeah, our buddy walk is tomorrow and unless Somaya makes some type of miraculous recovery, I doubt we'll be able to go. I'm really bummed about this. I was so excited. It seems as if every time our local DS chapter has some big event, one of the kids is sick or there's something else going on. Sigh. I dunno, maybe Somaya will be okay. That's what I'm praying for right now--and my sanity--it's been a rough couple of days...
Friday, August 28, 2009
Well the Meds Aren't Exactly Working
Well we're now on the maximum dose of Keppra and Yusef is still having 0-2 seizures a day. I've been in constant communication with the Dr.'s office and he wants us to come in sooner than was originally planned. So Tuesday we'll go in and discuss what he wants us to do.
I'm a little ticked off at the Dr., frankly. When I was there last week, we dicussed the treatment plan and what steps we would take if this med didn't work. He said we could add in another med, I think it was Zonegram. I fully expected him to call out a script for this, but instead he didn't want to make changes in the medication, and just wants to see us in his office. I guess I'll find out more on Tuesday.
I'm nervous because I don't know what he's going to say that's any different than what we discussed previously.
I've posted a video of a baby having infantile spasms if anyone's interested. It's not my Yusef, sorry I can't figure out how to post my video. I can't get my video to save on my pc so I can publish it. If anyone has any ideas or advice, please post.
Sometimes infantile spasms are misdiagnosed or overlooked, so if you have any suspicions about your little one you should call your pediatrician right away. It's also a good idea to video tape any unusual symptoms of behavior if you can, so your pediatrician will know exactly what's going on.
I'm a little ticked off at the Dr., frankly. When I was there last week, we dicussed the treatment plan and what steps we would take if this med didn't work. He said we could add in another med, I think it was Zonegram. I fully expected him to call out a script for this, but instead he didn't want to make changes in the medication, and just wants to see us in his office. I guess I'll find out more on Tuesday.
I'm nervous because I don't know what he's going to say that's any different than what we discussed previously.
I've posted a video of a baby having infantile spasms if anyone's interested. It's not my Yusef, sorry I can't figure out how to post my video. I can't get my video to save on my pc so I can publish it. If anyone has any ideas or advice, please post.
Sometimes infantile spasms are misdiagnosed or overlooked, so if you have any suspicions about your little one you should call your pediatrician right away. It's also a good idea to video tape any unusual symptoms of behavior if you can, so your pediatrician will know exactly what's going on.
Sunday, August 16, 2009
Neurologists appointment and increasing meds
We had our first visit with the neurologist Thursday. He seemed extremely knowledgable albeit a little quirky. I've actually worked with him before at the hospital, so I was prepared for his eccentricities. Little Yusef gave him a big ol grin when he was examining him, so looks like Yusef doesn't mind his personalilty one bit.
Unfortunately, Yusef is still having seizures, although fewer. We've gone up on the meds twice now, and he's still having about two episodes a day. We went up to 2 ml's yesterday, which is double his original dose. Yesterday he had two seizures, so far today, none. We'll see how today goes and if he has any seizures, I'm to call the doc tomorrow. If need be we will add another med to the regiment, and if that doesn't work we will start ACTH treatments. ACTH is a hormone and Yusef would have to be admitted to the hospital for these. It is a hormone naturally produced by the body and has alot of side effects. I'm praying that these other meds will do the trick and we won't have to go that route.
The good news is that Yusef will outgrow these types of seizures (infantile spasms). The Dr. thinks that we're looking at 6-12 months of treatments. In the meantime, it is imperative that we get control over them because they can be damaging to the brain.
I've also noticed that Yusef is so much more fussy since this has all began. After he has a seizure he literally screams bloody murder. It's absolutely heart wrenching and I feel so out of control and powerless.
Unfortunately, Yusef is still having seizures, although fewer. We've gone up on the meds twice now, and he's still having about two episodes a day. We went up to 2 ml's yesterday, which is double his original dose. Yesterday he had two seizures, so far today, none. We'll see how today goes and if he has any seizures, I'm to call the doc tomorrow. If need be we will add another med to the regiment, and if that doesn't work we will start ACTH treatments. ACTH is a hormone and Yusef would have to be admitted to the hospital for these. It is a hormone naturally produced by the body and has alot of side effects. I'm praying that these other meds will do the trick and we won't have to go that route.
The good news is that Yusef will outgrow these types of seizures (infantile spasms). The Dr. thinks that we're looking at 6-12 months of treatments. In the meantime, it is imperative that we get control over them because they can be damaging to the brain.
I've also noticed that Yusef is so much more fussy since this has all began. After he has a seizure he literally screams bloody murder. It's absolutely heart wrenching and I feel so out of control and powerless.
Monday, August 10, 2009
EEG Results and Starting on Meds
Thank to everyone for your kind comments and prayers! It really means alot to me.
And yes, to no surprise, the EEG showed seizure activity. To tell you truth, I'm mildly relieved, because I know sometimes EEG's will come up negative if the patient doesn't have a seizure at that time, even if they really do have an underlying seizure disorder. I was able to get the EEG done late Friday afternoon and the neurologists office called later that evening to call in a script. It was also nice to know the doc (we haven't actually met him yet, our actual consultation is Thursday) is on the ball and didn't blow us off until Monday.
So we're starting off with Kepra. I'm keeping my fingers crossed it does the trick and we're not having to constantly play with the meds to stop the seizures. I know this is a possibility though.
After I filled the script as I was driving home, I felt some tears come to my eyes. I just love my baby so so much and naturally I'm feeling quite a bit of apprehension.
He's been on the Kepra for 3 days now. It seems to be working! He had two seizures the first day we started it, but none since then. A couple of moms on the DS board at BabyCenter.com mentioned that the meds may make Yusef drowsy or not as active as usual and thereby slowing his development. I can say I've seen some very minute changes. He doesn't seem to smile and engage with me quite as much, although i can still manage to lure out a smile here and there. Apparently this is a common side effect of the meds and not much can be done about it. It's better than the flip side which is continued seizures which would inevitably lead to brain damage.
We're meeting with the neurologist on Thursday so I should know more about the plan and where we go from here. I'm assuming and have been told that he'll most likely want to do an MRI as well to see if there's been any scarring or any other anatomical issues going on.
I'll post more after our appointment on Thursday God willing.
And yes, to no surprise, the EEG showed seizure activity. To tell you truth, I'm mildly relieved, because I know sometimes EEG's will come up negative if the patient doesn't have a seizure at that time, even if they really do have an underlying seizure disorder. I was able to get the EEG done late Friday afternoon and the neurologists office called later that evening to call in a script. It was also nice to know the doc (we haven't actually met him yet, our actual consultation is Thursday) is on the ball and didn't blow us off until Monday.
So we're starting off with Kepra. I'm keeping my fingers crossed it does the trick and we're not having to constantly play with the meds to stop the seizures. I know this is a possibility though.
After I filled the script as I was driving home, I felt some tears come to my eyes. I just love my baby so so much and naturally I'm feeling quite a bit of apprehension.
He's been on the Kepra for 3 days now. It seems to be working! He had two seizures the first day we started it, but none since then. A couple of moms on the DS board at BabyCenter.com mentioned that the meds may make Yusef drowsy or not as active as usual and thereby slowing his development. I can say I've seen some very minute changes. He doesn't seem to smile and engage with me quite as much, although i can still manage to lure out a smile here and there. Apparently this is a common side effect of the meds and not much can be done about it. It's better than the flip side which is continued seizures which would inevitably lead to brain damage.
We're meeting with the neurologist on Thursday so I should know more about the plan and where we go from here. I'm assuming and have been told that he'll most likely want to do an MRI as well to see if there's been any scarring or any other anatomical issues going on.
I'll post more after our appointment on Thursday God willing.
Thursday, August 6, 2009
Infantile Spasms and EI update
First, the good news:
It looks like we'll continue to get our EI services. The organization that provides it now is filing Chapter 11, but will continue all homebased services, all praises to God.
Now, the bad news:
Last night I noticed my little one would tense up and throw his arms up very similar to a startle reflex. This happened in a very repetitive manner for a time lasting approx. 4 minutes. I knew right away this had to be some type of seizure activity. It happened again later in the night and I actually had the presence of mind to videotape part of the episode.
In the mean time I got out my handy dandy "Babies with DS" book and looked up the chapter on epilepsy. It said the most common type of seizure in babies with DS is called an infanile spasm. My husband and I felt our hearts sink as we looked at some videos out there on the internet of kids having infantile spasms and it looked exactly like those our baby had.
Obviously this morning I called my pedi first thing and after seeing the video and examaning him she also felt that was probably what is going on. We'll be getting an EEG, possibly an MRI and an appointment with a neurologist either tomorrow or Monday (prob. Monday).
He's had 3 more episodes over the course of the day (my pedi also knows about those). I feel like I'm on pens and needles waiting for another one to happen. He gets really grumpy and fussy afterwards also. Apparently this type of epilepsy can be quite damaging and sometimes hard to control. Fortunately, at least from what I've read, our kids tend to respond well to the treatments.
From what I was told the treatment for thses types of seizures are ACTH. I don't know much about this. I also think I read that they have to be admitted to the hospital for these treatments but I'm not sure.
Please keep us in your thoughts and prayers.
It looks like we'll continue to get our EI services. The organization that provides it now is filing Chapter 11, but will continue all homebased services, all praises to God.
Now, the bad news:
Last night I noticed my little one would tense up and throw his arms up very similar to a startle reflex. This happened in a very repetitive manner for a time lasting approx. 4 minutes. I knew right away this had to be some type of seizure activity. It happened again later in the night and I actually had the presence of mind to videotape part of the episode.
In the mean time I got out my handy dandy "Babies with DS" book and looked up the chapter on epilepsy. It said the most common type of seizure in babies with DS is called an infanile spasm. My husband and I felt our hearts sink as we looked at some videos out there on the internet of kids having infantile spasms and it looked exactly like those our baby had.
Obviously this morning I called my pedi first thing and after seeing the video and examaning him she also felt that was probably what is going on. We'll be getting an EEG, possibly an MRI and an appointment with a neurologist either tomorrow or Monday (prob. Monday).
He's had 3 more episodes over the course of the day (my pedi also knows about those). I feel like I'm on pens and needles waiting for another one to happen. He gets really grumpy and fussy afterwards also. Apparently this type of epilepsy can be quite damaging and sometimes hard to control. Fortunately, at least from what I've read, our kids tend to respond well to the treatments.
From what I was told the treatment for thses types of seizures are ACTH. I don't know much about this. I also think I read that they have to be admitted to the hospital for these treatments but I'm not sure.
Please keep us in your thoughts and prayers.
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