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Re: medical alert bracelet - Jan can you please advise ?

Serena,

I'm sure Jan will pick up your concerns in the previous note. If you go to one of Jans posts there is an email option at the bottom of it.

Kev

Country: England

Re: medical alert bracelet

In my experience, I've found that giving my elderly mother her own medical alert buttons at least gave me peace of mind in the moments that I was not able to be there for her. That way, she could get emergency help if she needed, just by pushing a button and nothing else. Anyways, I find every little bit helps. Best of luck to everyone in their search.

Type of Myotonia: Mother is Type 1

Medica Alert Jewelry Explained

Serena, sorry it took me a few days to answer. All the posts come through to my private email, but for some reason this one didn't!

What Kevin shared it what I'd recommend:

Myotonia Congenita
Malignant Hyperthermia
No Anectine
No Succinylcholine


Here it is broken down if any health professionals ask:

Myotonia Congenita is known to cause problems with anesthesia, primarily because of the shift in potassium from depolarizing agents (which block muscle contractions) like succinylcholine. But we also tend to have low levels of cholinesterase, an enzyme that breaks down a neurotransmitter called acetylcholine and sometimes inhalation anesthesia like halogen compounds can trigger a reaction.

Malignant Hyperthermia is a genetic disorder that makes a person very susceptible to inhalation anesthesia and depolarizing agents. Their temperature can rise so quickly that they can die. They can also have elevated potassium levels.

We DON'T have malignant hyperthermia. If your doctor ordered a DNA test for it or a muscle contracture test it would come back negative. However, because the triggering anesthesia is the same and because ALL anesthesiologists are familiar with MH and the protocol and emergency personnel like EMTs are moref familiar with MH, it is just easier to put that on the Medic Alert jewelry. You could lose valuable time in a crisis if someone had to look up myotonia congenita and try to figure out what was safe and what wasn't.

Anectine is one of the trade names for succinylcholine. There are several others in the same class of drugs, but it's the most recognizable to emergency personnel and I think it's wise to include it on the jewelry. If your son is in an accident and needs to be taken to the hospital in an ambulance, if there is difficulty with breathing the EMTs will often give anectine/succinylcholine so that they can insert a breathing tube easier. Unfortunately that can trigger cardiac arrest in someone with MC.

Before I had my necklace and bracelet engraved I spoke with anesthesiologists and EMTs to see what would be the best way to alert them to the potential for reactions and that's what we came up with. If your son needs surgery you'll have plenty of time to discuss it with the doctor and anesthesiologist...this is mainly for a crisis situation.

If you get the Medic Alert brand of jewelry there are several options including bracelet, necklace/medallion, watch and sports band. Because your son is so young, I'd probably go with the sport band or the necklace. I find the chain bracelet very uncomfortable and it often gets snagged. It's also hard to take on and off.

I've wondered if the watch really stood out enough for EMTs to notice. There's also a shoe tag, but again, they're just not used to looking for that.

You will also be able to give details about your son's condition for their file including doctor contacts, medications, allergies, etc. This is given when the emergency personnel call in to the toll-free number.

The sports bands are 2 for 1 right now. I think I may get a couple of colors! (MedicAlert.org)

Hope this helps -

Jan

Type of Myotonia: Thomsen's

Country: USA

Re: Medica Alert Jewelry Explained

jan thank you xxxxxxx

i have ordered a band already as i got panicky, i did put all the above apart from no succinylcholine do you think we will still be safe with the other information.

thanx for all your help so far its been invaluable xx

Type of Myotonia: unknown

Country: uk surrey

Re: Medica Alert Jewelry Explained

Serena,

I applaud your forward thinking but please don't panic. I'm 50 years old and I've suffered with severe myotonic symptoms most of my life. I've only ever had one accident that required me going to hospital in an ambulance.

My myotonia has made me much more aware of situations than most other people I know, it will probably prove to be the same with your son.

Of course there's always being in the wrong place at the wrong time, it happens, but you've already taken some pretty good measure to begin with.

Type of Myotonia: Becker's

Country: England