Post by lespring on Nov 22, 2009 23:31:37 GMT -5
Ok, I feel horrible! I haven't been here in ages!!!
Angela turned 13 in June, which is unbelievable to me! I could write a whole book of an update here, but I'll just hit the most important topics.
First and most important: Angela will be headed to Boston on December 13th. She'll be admitted to Boston Children's to meet with Dr. Sam Nurko. We'll be spending the week doing esophageal testing. Angela has Cricopharyngeal Achalasia. It's an EXTREMELY rare disorder of the esophagus, and even Mayo isn't equipped to deal with it. There are only a couple options for treatment, and the testing next month will tell us what, if anything we can do for Angela. She is in excruciating pain right now with EVERY single bite solid food she eats. It is horrible. Achalasia itself is pretty rare, for it to be bad enough to need surgery is more rare, but to have Angela's EXACT type (the Cricopharyngeal portion of the name) is EXTREMELY rare. In fact, I can find studies, and articles, but I can't find a single person who has it. I've gotten on list serves, etc. but it's so very rare in kids. I'm hoping the Dr. in Boston can hook us up with someone. Our biggest goal right now is to avoid having Angela back on a gtube...which would be for life, and not having to have her esophagus removed.
So, we'll be in Boston and hoping to meet up with some people on 12/13. I'm hoping we have a hotel with a pool so we can just have pool party there. Then she'll be discharged the afternoon of the 17th so we'll have that night as well. We'll be (hopefully) flying home on the 18th.
Last spring Angela was diagnosed with complex partial seizures. She started meds, and they're 99% under control. She's had a couple break-through seizures, but mostly things are good. This type of seizure is hard to diagnose, because they don't LOOK like a seizure. They look like extremely aggressive behavior that comes unprovoked. The only way you can really tell the difference is her eyes are glassy and she can't respond to you verbally. And, afterward she wants to sleep for about 1/2 hr. So she's on seizure meds, and between those and her behavioral meds there is a constant dance to find the right balance. We're in the middle of changing her from Depakote to Topamax right now, hoping she looses some weight with the switch!
Those are the biggest things going on right now. She just finished the bowling season, and is gearing up for floor hockey. I'm a little worried about putting a weapon in her head, but her coach assures me she'll be fine. She may be, but what about the other players?
LOL She's still swimming several days per week, and her strokes are looking great...when she wants them too! Sometimes she's pretty lazy and only swims 1/2 heartedly until her coach gets on her a bit.
Here's some pictures that were taken back in September. I thought maybe you'd enjoy them.
Angela turned 13 in June, which is unbelievable to me! I could write a whole book of an update here, but I'll just hit the most important topics.
First and most important: Angela will be headed to Boston on December 13th. She'll be admitted to Boston Children's to meet with Dr. Sam Nurko. We'll be spending the week doing esophageal testing. Angela has Cricopharyngeal Achalasia. It's an EXTREMELY rare disorder of the esophagus, and even Mayo isn't equipped to deal with it. There are only a couple options for treatment, and the testing next month will tell us what, if anything we can do for Angela. She is in excruciating pain right now with EVERY single bite solid food she eats. It is horrible. Achalasia itself is pretty rare, for it to be bad enough to need surgery is more rare, but to have Angela's EXACT type (the Cricopharyngeal portion of the name) is EXTREMELY rare. In fact, I can find studies, and articles, but I can't find a single person who has it. I've gotten on list serves, etc. but it's so very rare in kids. I'm hoping the Dr. in Boston can hook us up with someone. Our biggest goal right now is to avoid having Angela back on a gtube...which would be for life, and not having to have her esophagus removed.
So, we'll be in Boston and hoping to meet up with some people on 12/13. I'm hoping we have a hotel with a pool so we can just have pool party there. Then she'll be discharged the afternoon of the 17th so we'll have that night as well. We'll be (hopefully) flying home on the 18th.
Last spring Angela was diagnosed with complex partial seizures. She started meds, and they're 99% under control. She's had a couple break-through seizures, but mostly things are good. This type of seizure is hard to diagnose, because they don't LOOK like a seizure. They look like extremely aggressive behavior that comes unprovoked. The only way you can really tell the difference is her eyes are glassy and she can't respond to you verbally. And, afterward she wants to sleep for about 1/2 hr. So she's on seizure meds, and between those and her behavioral meds there is a constant dance to find the right balance. We're in the middle of changing her from Depakote to Topamax right now, hoping she looses some weight with the switch!
Those are the biggest things going on right now. She just finished the bowling season, and is gearing up for floor hockey. I'm a little worried about putting a weapon in her head, but her coach assures me she'll be fine. She may be, but what about the other players?
LOL She's still swimming several days per week, and her strokes are looking great...when she wants them too! Sometimes she's pretty lazy and only swims 1/2 heartedly until her coach gets on her a bit. Here's some pictures that were taken back in September. I thought maybe you'd enjoy them.
