Post by Cbean on Feb 8, 2006 23:10:07 GMT -5
OK, this may be long, but hey, I haven't posted in a really long time!!! A lot of you are looking for updates on Emily so I'll subject you all!!!
Hey gang. I always have such aspirations of doing such wonderful things. I feel bad that my little girl's birthday kind of came and went. Tough when your big brother's birthday is the day before and you yourself at one don't seem to do much more than a 3 month old.
You know what? I think God wasn't done teaching me my lessons yet. At this point I think DS is a piece of cake. I think he can start teaching someone else now.
As you all know, Emily was diagnosed with infantile spasms back in July. To be frank, these things suck! (Or thingy as the filter will change it to I'm sure!) Three med's later and we still haven't licked them.
We started out on our journey with ACTH, a steroid that is a "pulse" drug. It basically works or doesn't. Sneaky thing showed an improvement while we were in the hospital (Children's Hospital of Philadelphia - CHOP), then fell short when we got it home. 8 + weeks of sticking needles in her chubby thighs for nothing! Nothing except pumping her up! Little low tone baby looked strong - like bull!!!
Then we moved onto Topemax. We chose this drug b/c it had the least amount of side effects. Didn't really do much. So we agreed to give it a full month before we called it a failure. So then we went to vigabatrin, a drug widely used in Europe and Canada. It's not FDA approved so we smuggled it into the country in pottery on a marijuana plane. He he he, no we didn't!!! Sorry, couldn't resist! You just have to work out the papers for customs! There was a lot of research on babies with DS and spasms that did well on vigabatrin, so our neurologist was inspired. Plus she was using the drug with some other babies and they were having success with the drug. Initially, it looked like we were to. After a couple of weeks we were seeing less seizures and low and behold there was a baby in that 24 lb sack! We began to see smiles...something we hadn't seen since she was about 4-5 months old. She was becoming tolerant to therapy and starting to do well with sitting. (OK, you're only like 11 months old!) Then one day we heard this strange sound coming out of our baby - laughter! Life was starting to look good. So there I was pumping 500 mg of vigabatrin into my little girl's mouth twice a day. Then she got a sinus infection and the seizures started to get crazy again. Doctor pushed us up to 750mg in the am and 1000 in the pm. After we fully titrated up to that number, I got my vegetable back. No change in the seizures. Then she got an ear infection. She started the classic way...vomited, but kind of uncontrollably, then turned gray and started to seizure. A lot. I was totally freaked and had visions of a helicopter lifting us off to CHOP. Ran to the ER and found my new drug of choice. TYLENOL!!! I think I remember CC as the one who said she used it all the time - for EVERYTHING. Fevers and teething induce seizures as well as decongestants. So teething can cause fevers which bring on seizures and Em has only two teeth so far. The ped. dentist said there's a whole lot of action going on in her mouth and she will probably get a whole bunch of teeth at once. Yippy freakin' doo da! He's a great guy and he works with a lot of kids with special needs. So I got the lecture on DS teeth, he told me not to be afraid to use the Tylenol and Em got a toothbrush. My son gets a whole goodie-bag when he goes. I like Tylenol a lot.
So at that high dose of toxic med's and no improvement with EEG's or seizures I contacted her neurologist. We agreed we should take her off the drug. (Oh the side effect of this one was potential loss of periferal vision.) I asked if we could giver her about a month without meds to clean her system out and to see WHO she is. Every time we would visit the dr. she would ask what Em was up to and what my impression was. I always said the same thing:
"I don't know who my daughter is or why she is the way she is. I don't know if it is Trysomy 21, Infantile Spasms or sedation of the drugs."
So we continued our journey by decreasing her meds. Boy did she start looking good as the dosage decreased! I started to see a spirit in my child that I hadn't seen for 9 months. She started showing me all types of emotion and I found joy when she cried. I loved seeing her sad, mad, happy and sometimes ecstatic. Since she's been off the meds she started rolling over from back to belly. I've been able to tickle her and she laughs hysterically. She's got a great laugh! She is sitting pretty well now. One night she was sitting up in front of a mirror and she picked up a toy pom pom and put it to her mouth. I cried. Then she picked up her Lamaze "My friend Emily" doll by the rings the doll has attached to her hand. I cried. She's been cooing (YEY)and growling (unfortunately). One night she started going rrrr-rrrr-rrrr-rrrr - could it be for Ryan? Plus we swear we hear her repeat hi when we say it.
But with all this, the seizures are still there and now she has started this crying thing. Like a baby with colic. Then I grab the Tylenol and pray for a nap. Definately better after the Tyleno and the nap, but I never know when this new trick is going to strike. (I don't deal well with this part of it.)
Our next steps are for us to travel to CHOP next Wed for an EEG and blood work and a quickie mtg with her neurologist. I'll be attending a meeting at CHOP on 2/20 to learn more about the ketogenic diet and to be put on the list for Em as a candidate. Candidates that qualify will start the program 3/7. Meanwhile we're going to give depakote a shot before we move on to the diet. The diet may be a total pain in the but and sometimes still needs to be assisted with drugs anyway. Depakote will require a weekly blood test.
Now kids can grow out of infantile spasms at or around the age of two. Emily is 13 and a half months old. Watching your child have seizures and become a vegetable again for the next 9 months...don't think I have the stomach for that. Not thrilled at the idea of the sedating effect of these drugs either as I'm not sure which delayed her more, the seizures or the drugs. See why I said they sucked!
So what have I learned so far...
A lot of things, yet I can't earn a single buck off of all this new knowledge. I'm so close to being an RN, a lab tech, eeg tech and maybe even a budding neurologist!
Our kids have veins like spaghetti...in the slippery sense I mean.
My daughter is beautiful and the world sees her that way too. I can't go anywhere w/o people stopping me and I am so proud I'm pathetic! I love going to Pathmark in the am with just her as all the women come out from behind the counters to oggle at her!
People touch babies hands to much. If you do that, knock it off, ok?
Life is tough, but you can always find someone who's got it tougher! Look at my earlier post!
Life is short, appreciate all you've got while you've got it!
The world with all it's faults is a cool, wonderful place and generally people are good.
Speaking of people, there are some amazing people out there! If it wasn't for Em I wouldn't have met friends, therapists and people on message boards (cheer guys - that's you!!!) that have changed my life forever.
Never underestimate a child. No matter what the syndrome, medical condition or any other challenge they may have. You give them the chance and they WILL wow you! Even if it's in the simplest, smallest way. Just remember to pay attention!
Next time your child smiles at you, take a moment to really appreciate it. I react to each of Emily's smiles as if they were the first.
God bless you Emily. He certainly has blessed me by giving me you, my little 24 lb teacher. The lessons you are teaching me are priceless. I love you.
Much love to you my friends!
Christine
Wow, look what happens when your husband gives you a break and let's you run wild on the computer!!!
Go Pittsburgh!!!!! Meet that is not the team the superbowl!
Hey gang. I always have such aspirations of doing such wonderful things. I feel bad that my little girl's birthday kind of came and went. Tough when your big brother's birthday is the day before and you yourself at one don't seem to do much more than a 3 month old.
You know what? I think God wasn't done teaching me my lessons yet. At this point I think DS is a piece of cake. I think he can start teaching someone else now.
As you all know, Emily was diagnosed with infantile spasms back in July. To be frank, these things suck! (Or thingy as the filter will change it to I'm sure!) Three med's later and we still haven't licked them.
We started out on our journey with ACTH, a steroid that is a "pulse" drug. It basically works or doesn't. Sneaky thing showed an improvement while we were in the hospital (Children's Hospital of Philadelphia - CHOP), then fell short when we got it home. 8 + weeks of sticking needles in her chubby thighs for nothing! Nothing except pumping her up! Little low tone baby looked strong - like bull!!!
Then we moved onto Topemax. We chose this drug b/c it had the least amount of side effects. Didn't really do much. So we agreed to give it a full month before we called it a failure. So then we went to vigabatrin, a drug widely used in Europe and Canada. It's not FDA approved so we smuggled it into the country in pottery on a marijuana plane. He he he, no we didn't!!! Sorry, couldn't resist! You just have to work out the papers for customs! There was a lot of research on babies with DS and spasms that did well on vigabatrin, so our neurologist was inspired. Plus she was using the drug with some other babies and they were having success with the drug. Initially, it looked like we were to. After a couple of weeks we were seeing less seizures and low and behold there was a baby in that 24 lb sack! We began to see smiles...something we hadn't seen since she was about 4-5 months old. She was becoming tolerant to therapy and starting to do well with sitting. (OK, you're only like 11 months old!) Then one day we heard this strange sound coming out of our baby - laughter! Life was starting to look good. So there I was pumping 500 mg of vigabatrin into my little girl's mouth twice a day. Then she got a sinus infection and the seizures started to get crazy again. Doctor pushed us up to 750mg in the am and 1000 in the pm. After we fully titrated up to that number, I got my vegetable back. No change in the seizures. Then she got an ear infection. She started the classic way...vomited, but kind of uncontrollably, then turned gray and started to seizure. A lot. I was totally freaked and had visions of a helicopter lifting us off to CHOP. Ran to the ER and found my new drug of choice. TYLENOL!!! I think I remember CC as the one who said she used it all the time - for EVERYTHING. Fevers and teething induce seizures as well as decongestants. So teething can cause fevers which bring on seizures and Em has only two teeth so far. The ped. dentist said there's a whole lot of action going on in her mouth and she will probably get a whole bunch of teeth at once. Yippy freakin' doo da! He's a great guy and he works with a lot of kids with special needs. So I got the lecture on DS teeth, he told me not to be afraid to use the Tylenol and Em got a toothbrush. My son gets a whole goodie-bag when he goes. I like Tylenol a lot.
So at that high dose of toxic med's and no improvement with EEG's or seizures I contacted her neurologist. We agreed we should take her off the drug. (Oh the side effect of this one was potential loss of periferal vision.) I asked if we could giver her about a month without meds to clean her system out and to see WHO she is. Every time we would visit the dr. she would ask what Em was up to and what my impression was. I always said the same thing:
"I don't know who my daughter is or why she is the way she is. I don't know if it is Trysomy 21, Infantile Spasms or sedation of the drugs."
So we continued our journey by decreasing her meds. Boy did she start looking good as the dosage decreased! I started to see a spirit in my child that I hadn't seen for 9 months. She started showing me all types of emotion and I found joy when she cried. I loved seeing her sad, mad, happy and sometimes ecstatic. Since she's been off the meds she started rolling over from back to belly. I've been able to tickle her and she laughs hysterically. She's got a great laugh! She is sitting pretty well now. One night she was sitting up in front of a mirror and she picked up a toy pom pom and put it to her mouth. I cried. Then she picked up her Lamaze "My friend Emily" doll by the rings the doll has attached to her hand. I cried. She's been cooing (YEY)and growling (unfortunately). One night she started going rrrr-rrrr-rrrr-rrrr - could it be for Ryan? Plus we swear we hear her repeat hi when we say it.
But with all this, the seizures are still there and now she has started this crying thing. Like a baby with colic. Then I grab the Tylenol and pray for a nap. Definately better after the Tyleno and the nap, but I never know when this new trick is going to strike. (I don't deal well with this part of it.)
Our next steps are for us to travel to CHOP next Wed for an EEG and blood work and a quickie mtg with her neurologist. I'll be attending a meeting at CHOP on 2/20 to learn more about the ketogenic diet and to be put on the list for Em as a candidate. Candidates that qualify will start the program 3/7. Meanwhile we're going to give depakote a shot before we move on to the diet. The diet may be a total pain in the but and sometimes still needs to be assisted with drugs anyway. Depakote will require a weekly blood test.
Now kids can grow out of infantile spasms at or around the age of two. Emily is 13 and a half months old. Watching your child have seizures and become a vegetable again for the next 9 months...don't think I have the stomach for that. Not thrilled at the idea of the sedating effect of these drugs either as I'm not sure which delayed her more, the seizures or the drugs. See why I said they sucked!
So what have I learned so far...
A lot of things, yet I can't earn a single buck off of all this new knowledge. I'm so close to being an RN, a lab tech, eeg tech and maybe even a budding neurologist!
Our kids have veins like spaghetti...in the slippery sense I mean.
My daughter is beautiful and the world sees her that way too. I can't go anywhere w/o people stopping me and I am so proud I'm pathetic! I love going to Pathmark in the am with just her as all the women come out from behind the counters to oggle at her!
People touch babies hands to much. If you do that, knock it off, ok?
Life is tough, but you can always find someone who's got it tougher! Look at my earlier post!
Life is short, appreciate all you've got while you've got it!
The world with all it's faults is a cool, wonderful place and generally people are good.
Speaking of people, there are some amazing people out there! If it wasn't for Em I wouldn't have met friends, therapists and people on message boards (cheer guys - that's you!!!) that have changed my life forever.
Never underestimate a child. No matter what the syndrome, medical condition or any other challenge they may have. You give them the chance and they WILL wow you! Even if it's in the simplest, smallest way. Just remember to pay attention!
Next time your child smiles at you, take a moment to really appreciate it. I react to each of Emily's smiles as if they were the first.
God bless you Emily. He certainly has blessed me by giving me you, my little 24 lb teacher. The lessons you are teaching me are priceless. I love you.
Much love to you my friends!
Christine
Wow, look what happens when your husband gives you a break and let's you run wild on the computer!!!
Go Pittsburgh!!!!! Meet that is not the team the superbowl!
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
]
HUGS my dear...
I pray that depakote works for Emily as well as it did for Jacob. Tylenol must become your best friend. If you see a hint of anything coming on, give Emily tylenol. Even a little hint of a fever will get those spasm going. Sometimes I think Jacob is hooked on tylenol and when he is doing fine and I don't give him any, he goes through withdrawals. ;D I will keep Emily in our prayers, and everything you said about life, our children, and our blessings is so very true. I know I am better because of Jacob.
Since we are both from Jersey it only makes sense we meet up in Pittsburgh right LOLOL