We have somehow lost my son's medic alert bracelet and need to get another. I want to make sure I have the correct information on it. Could any of you share what you have on your sons? Also, I'd love to hear any recommendations of good places to get the bracelets. Thanks so much!

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On Joshua's bracelet it says "Duchenne Muscular Dystrophy" and "on steroids". Medic Alert should have a record of his though. Many times they will replace them for free when it comes to children. Good luck!

Naomi
If you are going to be speaking to medic alert, have a word about getting a bracelet for yourself. This may seem weird but we were advised to get a medic alert bracelet that reads: Carer of special needs child.

For the emergency contacts on the carers bracelet we have the school listed as one of the numbers. That way if anything ever happens during school hours, or on the way to do the pick-up, medicalert will contact the school and advise them of the situation so they can use their contact list to make alternative arrangements.

Outside of school hours it means that if you are ever ill or injured, the first responders know that contacting the people on your ICE list is a priority, as care arrangements for your child will have to be made.

We had never thought of this side of things - but when you actually think about it, it makes perfect sense.
Thanks so much for your replies...very helpful! Could anyone tell me too what the specific wording should be regarding the anesthesia and malignant hyperthermia?
Hi -

We got ours from n-style.

http://www.n-styleid.com/.

They have cool "kid type" jelly bracelets. Alex wears his 24/7. I order 10 at a time and replace with a new one every 3 or 4 months. They are inexpensive. The important "medical information portion" has never been lost. I also have Alex registered with Medic Alert, with all information and all medication.

Alex's says: Alex Maddux, Duchenne MD, ANES Alert and our phone #.

I like the idea of a parent having a bracelet too. Never thought of that.

Thanks.
As soon as they see "on steroids", they don't use the anesthesia, they use alternate medicines that won't interact with them.

Naomi
I went through Medic Alert for my son. The first year he was sponsor and yesterday we had to renew. On his it says Duchenne Muscular Dystrophy, steriod dependent and his ID #.
We got ours from www.idtags.biz. For the anesthesia ours reads: NO succinylcholine or inhalational anesthetics. Susceptible to Malignant Hyperthermia.
OMG, I never considered the need for a medic bracelet. Connor is not on any steroids yet, but should we still get one?
Yes, you should get one even if he's not on steroids yet. There are still precautions they have to take regarding him having DMD.

Naomi
Michael's says...

DMD
NO HALOTHANE OR
SUCCINYLCHOLINE
EMERGENCIES
(555) 555-5555
Hi Lisa, I think simply having DMD makes him susceptible to malignant hyperthermia....even if he's not on steroids, so it might be a good idea to have one. Here's an article about it....http://www.parentprojectmd.org/site/DocServer/ANAETHESIAINdmd.pdf?d....

Thanks everyone for all the helpful info on this!

Liisa Underwood said:
OMG, I never considered the need for a medic bracelet. Connor is not on any steroids yet, but should we still get one?
All, I don't mean to be so naive at times about this and I'm so happy to have these discussion boards to share information. FYI, there is an organization specifically dedicated to malignant hyperthermia: http://www.mhaus.org/ They have some great print outs to put in our children's records with their primary pediatrician, daycare providers and school nurses.

Thank you again for these recommendations!

Liisa

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