Busy day around here! First was the EEG. She did great! Hardly made a peep as the woamn was putting the electrodes on. I think she's finally getting used to it. Emma tagged along this time (she was visiting with Nana last week) and did surprisingly well for a 2 year-old. We were able to get the test done and get out with only one major meltdown which in my book is pretty successful. Then we stopped home and had some lunch with Daddy...something we don't get to do too often. Then on the road again to the Neurologist!Emma was DONE by then. It was way past nap time and nothing was keeping her occupied. The good news: The EEG is looking better! She was bummed that she was having the seizures still since things looked so much better but the plan for now is keeping her on the once daily steroid shots and we see what next week's EEG says and then start the taper then. Originally we were going to start the taper tomorrow but since she's still have 2-3 seizures a day we're going to stick with the higher dose. She said we'll keep an eye on it and if it seems like the medication isn't doing the trick to control the seizures then we'll wean her off faster and try something else.
Oh and another great update....we have teeth! 2 in fact. They've just barely broken through the gums but they're there!
Caroline
Friday, July 29, 2011
Thursday, July 28, 2011
Boo!
Caroline hasn't had a seizure in almost a week or so I thought. Tuesday I thought I may have caught something that looked like a spasm. Tuesday night she slept horribly. Wednesday I caught 2 more and again a horrible nights sleep. I called the doctor today and I'm waiting to hear back on what to do. I think she may want to increase her dose again :o( Poor girl. I can't wait until these injections are over with!
New wheels!
This past monday ATG Rehab came out and measured Caroline for a specialized stroller. Yipee!! It'll have all hte padding and support she needs. We're both very excited about it. The down side is that it'll take about 3 months to get it. I'm hoping things will go more quickly though as she's only getting bigger and need way more support than most products out there can give her.
We also went to the pediatrician this past weekend to get her blood pressure check (a nasty side effect of the medication is increased blood pressure) and it was up. Still in the normal range but still up so we cut her dose in half. She hadn't had a seizure since Thursday (we cut the dose on Sunday) but we'll be keeping our eye out as they may (but hopefully won't) return.
We also went to the pediatrician this past weekend to get her blood pressure check (a nasty side effect of the medication is increased blood pressure) and it was up. Still in the normal range but still up so we cut her dose in half. She hadn't had a seizure since Thursday (we cut the dose on Sunday) but we'll be keeping our eye out as they may (but hopefully won't) return.
Infantile Spasms..what are they?
Here's some info on IS from the epilepsy.com website
"Infantile spasms (also called West syndrome because it was first described by Dr. William James West, in the 1840s) consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures"). Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series.
Infantile spasms are most common just after waking up and rarely occur during sleep.
Who gets it?
Infantile spasms begin between 3 and 12 months of age and usually stop by the age of 2 to 4 years. They are uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and have been developing normally. There is no evidence that family history, the baby's sex, or factors such as immunizations are related to infantile spasms.
Tell me more
When a baby with infantile spasms has an EEG, the doctor usually will see an unusual pattern called hypsarrhythmia (HIP-sa-RITH-me-ah) when the seizures are not occurring. This chaotic, high-voltage pattern is often helpful in confirming the diagnosis.
Babies with infantile spasms seem to stop developing and may lose skills that they had already mastered, such as sitting, rolling over, or babbling.
How is it treated?
Steroid therapy (adrenocorticotropic hormone [ACTH] or prednisone) is the primary treatment for infantile spasms. Some experts recommend trying a seizure medicine such as Sabril (vigabatrin, not available in the United States), Depakote (valproate), or Topamax (topiramate) before steroid therapy. In countries where it is available, Sabril is often used as the initial therapy because it is relatively safe (especially for short-term use) and effective. It is especially effective for children with tuberous sclerosis (a disorder associated with abnormalities involving the brain, skin, heart, and other parts of the body). Sabril is associated with damage to the retina of the eye and should be used with caution in children.
What's the outlook?
Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be.
When the spasms stop, many children later develop other kinds of epilepsy. About one-fifth of children who have had infantile spasms will have the Lennox-Gastaut syndrome."
Caroline is currently getting the ACTH steroid injections in her little leg given by me (oh lucky me!)
"Infantile spasms (also called West syndrome because it was first described by Dr. William James West, in the 1840s) consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures"). Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series.
Infantile spasms are most common just after waking up and rarely occur during sleep.
Who gets it?
Infantile spasms begin between 3 and 12 months of age and usually stop by the age of 2 to 4 years. They are uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and have been developing normally. There is no evidence that family history, the baby's sex, or factors such as immunizations are related to infantile spasms.
Tell me more
When a baby with infantile spasms has an EEG, the doctor usually will see an unusual pattern called hypsarrhythmia (HIP-sa-RITH-me-ah) when the seizures are not occurring. This chaotic, high-voltage pattern is often helpful in confirming the diagnosis.
Babies with infantile spasms seem to stop developing and may lose skills that they had already mastered, such as sitting, rolling over, or babbling.
How is it treated?
Steroid therapy (adrenocorticotropic hormone [ACTH] or prednisone) is the primary treatment for infantile spasms. Some experts recommend trying a seizure medicine such as Sabril (vigabatrin, not available in the United States), Depakote (valproate), or Topamax (topiramate) before steroid therapy. In countries where it is available, Sabril is often used as the initial therapy because it is relatively safe (especially for short-term use) and effective. It is especially effective for children with tuberous sclerosis (a disorder associated with abnormalities involving the brain, skin, heart, and other parts of the body). Sabril is associated with damage to the retina of the eye and should be used with caution in children.
What's the outlook?
Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be.
When the spasms stop, many children later develop other kinds of epilepsy. About one-fifth of children who have had infantile spasms will have the Lennox-Gastaut syndrome."
Caroline is currently getting the ACTH steroid injections in her little leg given by me (oh lucky me!)
Updates! Some good...some not so good.
We'll start with the good update. We went to the eye doctor and she said that Caroline's vision seemed to be improving! She did have some reaction to the black and white striped drum (she had ZERO reaction last time). She also seems to responding more to the color red so we're making progress.
Now for the not so good update. On Tuesday the 12th I had noticed Caroline was doing some repetitive arm movements. Hadn't though much of it...maybe she was finally figuring out how to move them?! It happened again on Wednesday and I had mentioned to Dan that she was doing that "thing" again. Then on Thursday I had noticed her doing it AGAIN. Something in the back of my mind said that this was not her just figuring out how to move. I had contemplated calling the neurologist but didn't want to go only to find out that it was nothing. BUT my mama friends had made a pretty good point...how terrible would I feel it there was something wrong and I had let it go. I called the neurologist right away and of course she wasn't in the office "but they'd leave a message for her". Great! Now what? Well, thankfully the doctor was only out of the office for the day and had come back that night, saw my message and called right away. The plan was to go into the office on Friday and Caroline would have an EEG done and the other doctor would be there to take a look at it. Friday morning I received a call from the other doctor that we wouldn't be going to the office but would instead be admitted to the hospital for a 24hr EEG and video monitoring. So we made the hike to Yale and checked in. Caroline got all hooked up.
Poor girl HATED getting all of those wires glued to her head. She was hooked up for about 18hrs and then neurologist came in a confirmed our suspicions. Miss Caroline was having Infantile spasms. We started the steroid shots that Saturday evening and have been giving them to her twice a day since. SHe was in the hospital for a total of 5 days and her and I were so ready to get out of there!!
Now for the not so good update. On Tuesday the 12th I had noticed Caroline was doing some repetitive arm movements. Hadn't though much of it...maybe she was finally figuring out how to move them?! It happened again on Wednesday and I had mentioned to Dan that she was doing that "thing" again. Then on Thursday I had noticed her doing it AGAIN. Something in the back of my mind said that this was not her just figuring out how to move. I had contemplated calling the neurologist but didn't want to go only to find out that it was nothing. BUT my mama friends had made a pretty good point...how terrible would I feel it there was something wrong and I had let it go. I called the neurologist right away and of course she wasn't in the office "but they'd leave a message for her". Great! Now what? Well, thankfully the doctor was only out of the office for the day and had come back that night, saw my message and called right away. The plan was to go into the office on Friday and Caroline would have an EEG done and the other doctor would be there to take a look at it. Friday morning I received a call from the other doctor that we wouldn't be going to the office but would instead be admitted to the hospital for a 24hr EEG and video monitoring. So we made the hike to Yale and checked in. Caroline got all hooked up.
Sunday, April 17, 2011
Who needs to see??
At the moment, not Caroline! She was diagnosed a couple of months ago with Delayed Eye Maturation. She can tell the difference between light and dark but can't see any objects. They're hoping that she's able to see by her first birthday but we'll have to wait and see. I'm amazed by how well she's been able to adapt. She hears something interesting and turns her little ear towards it. She can smell me the instant I walk into the room which makes it hard to sneak in and check on her at night. Whether or not she's able to see any more than a few months ago is up for debate. She seems to be looking at black and white things more and has even taken a swat or two at them. She still doesn't track anything though so I'm not sure if she's actually see more or it's just a coincidence. She also looks in the direction of what she's listening to, or at least mot of the time she does. If I'm talking to her her eyes will be looking at me but she clearly isn't looking at me which I think has been the hardest. It's as if the lights are on but no body's home. I want nothing more than to pick her up one day and having her look right at me and give me a smile. It will happen one day (I hope).
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