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newly diagnosed   Message List  
Reply | Forward Message #1458 of 1869 |
Re: [Cyclic Vomiting Syndrome] Re: newly diagnosed

Mady's in the hospital for the weekend--still can't stop puking. My husband and
switched spots for tonight--I'm home with a martini (is it ok to say that?!). I
think they're going to give her Atavin (sp?) tonight to knock her out. Is that
what they use for Kathleen or anyone else? She wants to eat so badly and tried
several times, no luck or course. Even the bubble gum she was chewing made her
yack. The weekend is a rotten time to get any help in the hospital, but the GI
doc on the floor has been in contact with our doc. They did an ultrasound of her
kidney, etc and belly xrays to rule out blockages. I think they're going to give
her an enema, too, since it's been at least a week since she's done anything.
But, jeez, she's been throwing up for the better part of 4 weeks and lost 10
lbs--what could she possibly still have in her intestine??? If I tell you I'm
beside myself, I'm guessing you all know what I mean. How can she just keep
throwing up? Rhetorical... Milwaukee is 2 hours from our house. Could be a lot
worse. Fortunately we live in a small, tight-knit suburb and my mom is close by
to be there for our 14 year old daughter who gets the short end of everything
when we have to drop it all to get to the er or dr appts. One thing the doc
mentioned today was something about sympathetic and parasympathetic nervous
systems having something to do with CVS ??? Anyone have a clue about this? This
guy was kind but had about zero personality so it was tough to relate to him.
I'm sure I'll have more info when I get back with the "regular" team on Monday.
I'll keep you posted but in the meantime you have no idea how much it means to
know all of you unknown friends are out there in cyberspace sending prayers and
hugs to a kid and her family who you don't even know. Thank you. Christine

[Non-text portions of this message have been removed]




Sun Jan 20, 2008 2:02 am

cjmadysmom
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Message #1458 of 1869 |
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Our 12 year old daughter was diagnosed Friday with CVS. We are seeing the group at Milwaukee (Dr. Rudolph). It's been 2.5 years since this started in earnest,...
Christine Marks
cjmadysmom
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Jan 15, 2008
1:16 pm

My daughter is only 8, but the size of an average 4-year-old, so the 8mg of Zofran can only be 4-6 for us...We're trying Amytriptilline right now, after our...
KIM MIDDLETON
kimmaymiddleton
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Jan 15, 2008
5:40 pm

My son (11) used amitriptyline as a migraine and headache preventative. I have not heard it being used for CVS. Since being on a low dose of amitriptyline...
ohgr8nowwhat
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Jan 18, 2008
8:13 pm

I hope they didn't take him off the amitriptyline cold turkey, they are supposed to gradually reduce the dose. Our daughter had problems with it too and we...
mcdolemom728
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Jan 20, 2008
12:15 am

Mary - ... They took him off of it cold turkey. I asked the Neuro. and he said it was fine to stop it immediately and go to the Depakote. I did this on ...
ohgr8nowwhat
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Jan 20, 2008
6:03 am

There are side affects to going off without gradually reducing the dosage, especially if they've been on it for a while. I would suggest looking it up online...
mcdolemom728
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Jan 20, 2008
6:44 am

I found this info online. I would definitely call the doctor, something doesn't sound right. Other drug names: A B C D E F G H I J K L M N O...
mcdolemom728
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Jan 20, 2008
6:54 am

Thank you so much for caring about my son and helping me with this! Terry...
ohgr8nowwhat
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Jan 20, 2008
7:16 am

just wanted to share my understanding is that the dose of amitriptyline for cvs is way lower than it would be prescribed for depression. Mimi ... From:...
mpizey@...
pizenstein
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Jan 20, 2008
12:42 pm

My daughter is 17 now and we've been where you are. The good news is that she is so much better now. She hasn't been hospitalized or had a really bad episode...
mcdolemom728
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Jan 16, 2008
3:54 pm

Hi, I'm Kathleen, the 17 year old my mom was talking about. If your daughter would like, I would love to talk to her some time. I know it can be really hard...
mcdolemom728
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Jan 16, 2008
5:06 pm

Kathleen: She will LOVE to talk to you...I'm getting ready to take her into the er for fluids, but you can be sure she'll get back to you as soon as we're home...
Christine and Steve M...
cjmadysmom
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Jan 16, 2008
5:44 pm

How is your daughter today? I hope she is feeling much better. Are they doing more than giving her IV fluids when she goes to the ER? Our doctor always...
mcdolemom728
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Jan 17, 2008
4:26 pm

i also have a 10 yr old girl that has had it since she was a baby ....she would be happy to talk to your daughter about it..... I really want to try the...
Vicki
mothROtwins
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Jan 16, 2008
6:48 pm

... of ... age ... commiserate ... Our 9 year old has had CVS since age 4 and I am so blessed to have found this site and you who understand. We finally got...
LilaThom
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Jan 17, 2008
8:36 pm

Thanks to everyone who has resonded. We were in the ER for 8 hours yesterday...seemed like we'd shut the cycle down. Came home and had the pizza Mady had been...
Christine and Steve M...
cjmadysmom
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Jan 18, 2008
2:13 am

I'm so sorry to hear that you had to make another trip back to the hospital. They should have admitted her the first time and made sure she was ok before...
mcdolemom728
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Jan 20, 2008
12:36 am

Mady's in the hospital for the weekend--still can't stop puking. My husband and switched spots for tonight--I'm home with a martini (is it ok to say that?!). I...
Christine and Steve M...
cjmadysmom
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Jan 20, 2008
2:02 am

I'm glad they decided to keep her. I agree, the care isn't always the greatest on the week-end. Giving her something to knock her out is the best thing right...
mcdolemom728
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Jan 20, 2008
6:34 am

Christine - ... I am so sorry. ... GOOD! You need a rest. ... out. My son has taken oral ativan and it did not work for us. I hope the IV will work. ... and...
ohgr8nowwhat
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Jan 20, 2008
6:40 am

Amitriptyline did nothing for Sarah's cvs...we tried everything ....nothing has worked....need to try the supplements.... ohgr8nowwhat...
Vicki
mothROtwins
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Jan 20, 2008
4:26 pm

Try Zofran at elevated dosage. This is a safe drug, and has been prescribed at levels exceeding 250 mg in extreme instances of chemotherepy. My daughter...
doc_234
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Mar 12, 2008
1:40 am

Are we allowed to talk doses here re: the CoQ10 and L-Carnitine? Thanks, Mimi ... From: "mcdolemom728" <mcdolemom@...> I'm so sorry to hear that you...
mpizey@...
pizenstein
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Jan 20, 2008
12:42 am

Mimi - ... I have asked about this in the past and I believe the info. should be in the archives. Put each one in the search and it will come up with past...
ohgr8nowwhat
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Jan 20, 2008
6:35 am

Again the amitrptyline dose is supposedly very small for cvs--- i do know my neuro did not want to try depakote (or topamax) due to the side effects...so could...
mpizey@...
pizenstein
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Jan 20, 2008
12:56 pm
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