Support Group for Moms, Dads, Grandparents and other caregivers of Babies with Infant Reflux and GERD  - InfantRefluxDisease.com

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Old 12-16-2009, 07:43 AM   #1
Mary
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Andrea made me think of something that might help several of us
Andrea's update about her own health got me to thinking that a suggestion we made to her might actually be a good idea for many of us.

Google offers a free printable download that includes your medical history, current medications and anything else that would be important for a first responder/hospital personnel to have in the event you're incapacitated and unable to relate this information. It's a good idea to have if you have any medical issues OR for those of us with tubers/allergic kids/any other medical issues. If you're, God forbid, in an accident and unable to tell someone about yourself or your kiddo, having that sheet on your person (in your purse/wallet, for instance), it could help out a lot.

We all have our kids' medical histories engraved in our brains...but if we're unable to talk, it's useless, KWIM? It's also a nice idea to give this for a caregiver to have on hand (esp. during the holidays when many of us will be visiting family).

www.google.com/health
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Silent refluxer, MSPI, DGE/GI dysmotility, Constant bouts of constipation, low muscle tone, hx Mallory-Weiss tear, IgA deficiency
Non-eater ---> G-tube fed 24/7---> G-tube fed 12 hours/day---> Now EATING and only tubing occasionally!!



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Old 12-16-2009, 08:23 AM   #2
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Re: Andrea made me think of something that might help several of us
That's a great idea, Mary.

Here's another one...I can't believe I haven't thought of posting it here before, actually. My employer offers a website which is an electronic clearinghouse for your medical records. Enter data for yourself and all family members, and the site generates printable wallet cards for each family member with your name, allergies, the website, and a password to your information. You also have a second password which gives you edit control. If something should happen (accident, etc) or if you're just in a strange ER, physician's office, etc, the staff goes to the website, enters the password from the card, and voila...your medical history.

This is a free site, and really handy. I printed two sets of wallet cards for all of us. That way, George and I both have one in our wallets at all times. I have also printed one of Brenna's cards for each of my parents, since she spends a good deal of time with them.

www.myhealthfolders.com
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Brenna Claire, my little love
Former MSPI
Reflux diagnosed at 12 weeks of age. Prevacid 15-30mg/day from 3-13 months.
Off all meds from age 1 to 2 1/2. Zegerid from 2 1/2 to 3 1/2 then back to Prevacid.
Singulair, Allegra, Nasonex, Albuterol
Off Prevacid for the time being, fingers are crossed!



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Old 12-16-2009, 09:02 AM   #3
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Re: Andrea made me think of something that might help several of us
GREAT ideas, ladies!!!! I have a "Strap Wrap" for Ava's carseat. I got it from ThriveRx at the mito walk in Sept. They are great!

It has all her info, history, and consent to treat signed by me. With that and her Medic Alert, I feel pretty safe.
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Mommy to Ava Bella, 5.4.05
Mitochondrial Disease, Complex III OXPHOS,
with a laundry list of symptoms spanning GI, neuromuscular, cardiac, autonomic, and pulmonary systems
Surgeries:
Nissen fundoplication x 2, giant paraesophageal hernia repair, G/J tube, muscle biospy x 2,
pacemaker, adenoidectomy

Our pharmacy:
Nexium, Zantac, Reglan, Miralax, Carnitor, CoQ10, Creatine, Alpha Lipoic Acid, Riboflavin, Albuterol, Flovent, Zyrtec, Neurontin


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:elephant: Ava + Miki = BFFL :elephant:
"Kids don't remember what you try to teach them. They remember what you are."
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Old 12-16-2009, 09:05 AM   #4
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Re: Andrea made me think of something that might help several of us
wow, thanks ladies. I need to get on the ball. If something happened to me, Allie would be SOL.
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Mom to my two GERDlings, Allie 9-2-05 and Jackson 5-3-2008.

Allie has GERD, is tube fed, and is on Prilosec, 20 mg per day and 50 mg of zantac efferdose. Check out our "homemade blended formula" diet sticky in the tube feedings forum. Recently diagnosed with extremely rare chromosome deletion, called 9q21.13q21.31.




Jackson is on a very low dose of Prilosec and was weaned successfully off of Zantac Efferdose. After over one year of significant eating struggles, he is so much better, and is actually starting to enjoy eating. Hope to be med free very soon.

*Forever keeping Sam and Luke in our hearts*
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Old 12-16-2009, 09:14 AM   #5
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Re: Andrea made me think of something that might help several of us
Christyn, that's totally how I felt! I created a Word document "Brief Medical History for Ava", with her DOB, pregnancy info and synopsis of development, surgeries and procedures, tube info, pacer info, formula and rate, and current issues and diagnoses. I keep that in a 1/2" binder called "The Ava Files", along w/ a physician list (addresses and phone/fax numbers), detailed med list w/ doses, a sheet called "Ava's Attachments" (tube info, pacer info/serial number/manufacturer, pump info), our important contact info, etc. I try to make sure anyone that has Ava has the Ava Files.
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Mommy to Ava Bella, 5.4.05
Mitochondrial Disease, Complex III OXPHOS,
with a laundry list of symptoms spanning GI, neuromuscular, cardiac, autonomic, and pulmonary systems
Surgeries:
Nissen fundoplication x 2, giant paraesophageal hernia repair, G/J tube, muscle biospy x 2,
pacemaker, adenoidectomy

Our pharmacy:
Nexium, Zantac, Reglan, Miralax, Carnitor, CoQ10, Creatine, Alpha Lipoic Acid, Riboflavin, Albuterol, Flovent, Zyrtec, Neurontin


:heart: http://www.caringbridge.org/visit/avaknops :heart:
:elephant: Ava + Miki = BFFL :elephant:
"Kids don't remember what you try to teach them. They remember what you are."
— Jim Henson

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Old 12-16-2009, 09:38 AM   #6
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Re: Andrea made me think of something that might help several of us
This is GREAT stuff!

There are also conflicting opinions about putting "ICE" (In Case of Emergency) contacts in your cell phone, but I found this site:

http://www.icesticker.com/media.html

I asked DH (a firefighter/paramedic) if he had ever heard of looking in patients' cell phones for ICE numbers and he hadn't, but apparently the concept is spreading. I certainly see no harm in it (especially since it's been confirmed that you can't get a phone virus through your "ICE" contacts as some hoaxers were reporting)...
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Old 12-16-2009, 09:40 AM   #7
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Re: Andrea made me think of something that might help several of us
We have medic alert for Emily, but dh doesn't carry anyting for his stuff (Type 1 diabetic and seizure disorder). He doesn't want to wear a bracelet or anything, but maybe I can get something into his wallet. I assume emergency personnel are trained to look through wallets?

I also like the idea of having something on her car seat. We had a seat that came with a tag attached with a fold out form in it for medical info, but we no longer have that seat and I meant to figure something out to attach to her seat now.

Can you get a strap wrap anywhere else?
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Old 12-16-2009, 09:52 AM   #8
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Re: Andrea made me think of something that might help several of us
Melissa, ask your local hospital/EMS dept or fire department about CHAD (Children Have An iD) stickers. They are 3x5" stickers that you place on the carseat with contact info, etc. We used to have spares at dh's station. I'll check to see if we have any and get back with you.

Aim, we always check cell phones for ICE. We started a couple of years ago. I have 3 ICE contacts on my phone, and there are several ICE apps for the iPhone, too.
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Brenna Claire, my little love
Former MSPI
Reflux diagnosed at 12 weeks of age. Prevacid 15-30mg/day from 3-13 months.
Off all meds from age 1 to 2 1/2. Zegerid from 2 1/2 to 3 1/2 then back to Prevacid.
Singulair, Allegra, Nasonex, Albuterol
Off Prevacid for the time being, fingers are crossed!



At the behest of my employer, please remember that opinions expressed here are mine and mine alone.
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Old 12-16-2009, 10:13 AM   #9
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Re: Andrea made me think of something that might help several of us
Good to know, Lori...thanks!
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Old 12-19-2009, 12:21 PM   #10
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Re: Andrea made me think of something that might help several of us
a tip when you do ICE contacts is to put them in your phonebook as *ICE instead of just ICE. if they're in as ICE, the rescue workers will have to scroll through your phone book to the I section, and if it's a real bad emergency, they might not have time to do that. putting the astrick in front of it makes it go to the top of your phone book, so all they would have to do it go to contacts and they see it right away. i got that tip from one of the guys my dad works with at the firehouse... he's a volunteer firefighter/EMT
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