We've had another week. It can be summed up in a direct Izzy
quote: "STUPID MEDICINE!" Mind you, saying "stupid" is cursing for
Izzy, so her yelling this phrase at the top of her lungs should
give you a feel for what we are dealing with.
Let me back up a little though.
Izzy did make it to school two days in a row last week--Wednesday as I last wrote about and Thursday. Thursday night, however, was the beginning of new horrific saga in the tummy wars.
The abdominal migraines do seem to be controlled with the new medicine--cyproheptadine. But as of Thursday night, they have brought a side effect or at least set into motion a new problem--esophageal spasms. Basically, Izzy's esophagus is clinching up, like a charlie horse. This pain is lasting hours and hours. Of course, Dale and I didn't figure it out Thursday night and Izzy didn't sleep at all. Neither did Dale or I. So, Friday Izzy stayed home to rest. But she was really fine during the day.
Friday night, same thing happened, but I figured it out. So, at 1:00 a.m., we gave Izzy a hot bath to help calm the spasm and she was able to sleep long enough and well enough to go to the Parade Company with her girl scout troop.
Saturday night she again needed a bath in the middle of sleep to calm the spasm. I began researching other methods to calm the spasm to make it through to Monday when we could call the doctors' offices. We ended up raising the head of Izzy's bed Sunday night. That night and the next she did not appear to have spasms or at least not as bad. She did scream out in the middle of each night, but not enough to tell us what was going on (just enough to get Dale and I out of bed and freaking out).
Izzy was rested enough to go to school on Monday and Tuesday and was well enough to celebrate her Daddy's birthday and decorate for Halloween. She took an hour nap at school both days.
Last night, even with the head of Izzy's bed elevated, the spasm came back in full force. Izzy needed a hot bath around 11:00 p.m. (several hours after going to sleep). Needless to say, Izzy took another long, long nap at school today.
Let me back up a little though.
Izzy did make it to school two days in a row last week--Wednesday as I last wrote about and Thursday. Thursday night, however, was the beginning of new horrific saga in the tummy wars.
The abdominal migraines do seem to be controlled with the new medicine--cyproheptadine. But as of Thursday night, they have brought a side effect or at least set into motion a new problem--esophageal spasms. Basically, Izzy's esophagus is clinching up, like a charlie horse. This pain is lasting hours and hours. Of course, Dale and I didn't figure it out Thursday night and Izzy didn't sleep at all. Neither did Dale or I. So, Friday Izzy stayed home to rest. But she was really fine during the day.
Friday night, same thing happened, but I figured it out. So, at 1:00 a.m., we gave Izzy a hot bath to help calm the spasm and she was able to sleep long enough and well enough to go to the Parade Company with her girl scout troop.
Saturday night she again needed a bath in the middle of sleep to calm the spasm. I began researching other methods to calm the spasm to make it through to Monday when we could call the doctors' offices. We ended up raising the head of Izzy's bed Sunday night. That night and the next she did not appear to have spasms or at least not as bad. She did scream out in the middle of each night, but not enough to tell us what was going on (just enough to get Dale and I out of bed and freaking out).
Izzy was rested enough to go to school on Monday and Tuesday and was well enough to celebrate her Daddy's birthday and decorate for Halloween. She took an hour nap at school both days.
Last night, even with the head of Izzy's bed elevated, the spasm came back in full force. Izzy needed a hot bath around 11:00 p.m. (several hours after going to sleep). Needless to say, Izzy took another long, long nap at school today.
Finally, her GI doc got back to us. He has prescribed oral
budesonide, a steroid. Izzy already takes budesonide twice a day in
a nebulized fashion (pulmicort). The idea behind the oral
budesonide is to coat Izzy's esophagus and prevent the spasms.
Unfortunately, this puts a huge kink in Izzy's bedtime routine that
has been in place for almost her entire life. In order to coat
Izzy's esophagus, she must take the budesonide and not drink
anything for several hours after. Izzy always takes a drink of
water after her medicines AND she always, always has a glass of
water at her bedside in the night because she takes lasix (a
diuretic) at bed time. When we had to tell her she could not have
water by bed for the first three hours of the night, she cried.
Izzy never cries over medicines, but she cried over this. She did
agree to logic and knew she'd rather give up water for three hours
than have the pain, but she was still upset at the whole
situation.
What's worse is the medicine tastes horrible! Izzy cried and cried after I gave it to her. She even licked her arm to try and get the taste out of her mouth. She screamed "STUPID MEDICINE!!!" over and over and punched one of her stuffed animals to try and get the anger out. When she had moved onto sadness, she looked at me and asked if this was a medicine she was going to be able to stop. Of course, I couldn't tell her yes. And she even more sad.
We will be trying to add flavoring to make the budesonide taste better, but I'm not holding out much hope. On top of all of that, this medicine increases the likelihood of yeast infections and Izzy is constantly battling those already. It seems like a no win situation, but will hopefully, end her excruciating pain.
I hate medicine! I hate that my sweet girl needs to regularly take 19 medicines. I hate it all!
I love this beautiful pink princess though.
Mel
What's worse is the medicine tastes horrible! Izzy cried and cried after I gave it to her. She even licked her arm to try and get the taste out of her mouth. She screamed "STUPID MEDICINE!!!" over and over and punched one of her stuffed animals to try and get the anger out. When she had moved onto sadness, she looked at me and asked if this was a medicine she was going to be able to stop. Of course, I couldn't tell her yes. And she even more sad.
We will be trying to add flavoring to make the budesonide taste better, but I'm not holding out much hope. On top of all of that, this medicine increases the likelihood of yeast infections and Izzy is constantly battling those already. It seems like a no win situation, but will hopefully, end her excruciating pain.
I hate medicine! I hate that my sweet girl needs to regularly take 19 medicines. I hate it all!
I love this beautiful pink princess though.
Mel
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