dharrison Registered: 08/10/09
Posts: 35
|
|
| |
Reply with quote | #1 | For those who have kept up with Lily's episodes, we have good news. She has made it three weeks now without a new episode! (Refresher... Lily is 4 years old, has had CVS for about 2 years, and with daily meds has settled into an every 2-4 week pattern, requiring ER or Hospital attention 80% of the time)
In addition we had a call last Wednesday at 9pm from Dr. Li's office. They finished with Lily's referral paperwork, and wanted to see her the following Wednesday. We are packing up the car tonight (Monday) and starting our drive that way. Probably spend the night in Des Moines tonight, and then drive in the rest of the way on Tuesday so that we are ready for the 10 AM on Wednesday.
We really hope that: 1) Dr. Li can come up with a more effective strategy for increaing time between episodes, and managing an active episode. and 2) The trip does not set off a new episode.
Thanks, Darrin. __________________ Darrin.
(Father of Lily, born in Mar 2005, Treated for CVA Since Oct 2007) |
| Loading... | | |
dharrison Registered: 08/10/09
Posts: 35
|
|
| |
Reply with quote | #2 | Lily had an appointment this morning with Dr. Li at the Children's Hospital of Wisconsin, in Milwaukee. Dr. Li runs their Cyclic Vomiting Syndrome program. It was a great visit.
The general outcome of the visit:
He had no real complaints with what we have been doing thus far. We have been progressing with her meds and interventions in an order that was appropriate. He did make a few changes. With her daily meds, he is dropping the atenolol, changing the quantity of the amitriptyline and is adding in a new drug, cyproheptadine. He has also changed some of the meds during an episode. The new IV meds are chlorpromazine, diphenhydrzmine, and ketorolac (toradol). We also switched her zomig from the oral to the nasal variety, to see if that is any more effective.
There was a switch to the timing of the intervention process as well. Instead of giving home intervention 3-4 hours, we give it 1 hour, and then head to the ER or Hospital and start IV intervention. Ideally IV would be started within 1 to 2 hours of the onset.
He also had some plans for the "next steps" if these changes don't help.
On the whole, we were very impressed. Really nice guy. Very friendly, knowledgeable, and great "bed side manner". Looking forward to any continued interactions with Dr. Li. Lily was nervous going into the visit, but seemed to settle down fairly quickly and left in a very good mood.
We were able to take a bit of time after the appointment for a yummy lunch at an old style A&W and then took a tour of the Jelly Belly distribution center just over the border of WI. Made for a nice relaxing stop and a good memory to help with any 'ill' effects of the day. We have enjoyed the hospitality of some friends in a north Chicago suburb, and Lily and her brother Kiel have had a wonderful time with their children Xander, Atticus, and Carter. And even better, from the parent perspective is that Kiel had a wonderful time entertaining Beck today while we were off to the doctor's.
All in all an amazing adventure, and one we look forward to seeing what the results may be. __________________ Darrin.
(Father of Lily, born in Mar 2005, Treated for CVA Since Oct 2007) |
| Loading... | | |
mahler1987 Lead Moderator
Registered: 04/16/05
Posts: 1,986
|
|
| |
Reply with quote | #3 | Darrin, That is awesome. I know that limiting the time you give home treatment before heading to the ER has proven very beneficial to me. I hope it helps Lily as well. I too am only supposed to give it 1 hr before I head out to our ER. Most times, my episodes can be stopped dead in their tracks. I will pass all this on to Kate when I talk to her, she's still in NC handing some family stuff. I am glad it was such a positive experience for all of you.. I wouldn't mind touring Jelly Belly myself lol. We have one of the drive in A & W's about 15 miles from my house. It's always the first place we go when the winter weather breaks, and we can put the top down and go... there is just something so right about that lol. Pattie __________________ I may have CVS but CVS is not me. |
| Loading... | | |
ginny Moderator
Registered: 03/18/05
Posts: 1,772
|
|
| |
Reply with quote | #4 | Such great news from the visit. Dr.Li is a very impressive guy. I hope the new treatment plan works very well for Lily.
__________________ ginny
CVSA volunteer |
| Loading... | | |
debbiespage Registered: 04/26/09
Posts: 43
|
|
| |
Reply with quote | #5 | I am so pleased for Lily and your family that your visit with Dr Li went so well - lets hope it is all successful and you remain episoide free for yet a while.
Take care and god bless Debbie mother of Katie, age 7 |
| Loading... | | |
klconner Moderator
Registered: 06/29/05
Posts: 2,265
|
|
| |
Reply with quote | #6 | Awesome News!! This post made my day!! kate __________________ "It may be one step forward and two steps back, ....I've learned that what is important is making that one step count." ~ Michael J. Fox |
| Loading... | | |