Keeping Seizure meds cool

[moe10378]

I have twins with epilepsy. They both have diastat (rectal seizure med to stop a seizure) that must not get hot. Am I permitted to take a small cooler bag into the parks to keep it cool? Thanks!

 

[mickmomolly]

Of course! A small soft sided cooler bag is no problem, with whatever you use to keep it cool...are the medicines in plastic or glass containers? You will have no problem with plastic, if they are glass you may have an issue, depending on how checks the bag, they may let you go if they are clearly labeled prescriptions, or may have to send you to the baby care center for storage.

 

[SueM in MN]

Hmmm!
My post disappeared

You can bring in a cooler without any issue. They are worried about glass bottles, not medication.

You can also store medications that need to be kept refrigerated in First Aid. There is a First Aid station in each park and they also have private rooms with cots where you can administer the medication or rest after a seizure.

 

[jmartinez1895]

We have kept diastat with us at all time for 10 years and have never had to go out of our way to keep it cool. I keep them inside of an insulated baby bottle bag when we are out and about on hot days. we live in Alabama so it gets hot. If we will be out for long periods and when we do Disney i will put the bag into the fridge over night ( with out the meds) and then it keeps them cool all day long.

 

[ladyjubilee]

my son has a distant too. We basically keep his in his backpack. Which always stays with him, and we have to keep him cool.

We are hoping our distant and seizure med days are over. He had the laser surgery last month and has not had a seizure since ��.

 

[acebatonfan]

Hi!

I'm reading some of the information for diastat, and it says that you can store it in environments around 77 degrees Fahrenheit. Have you considered using a Frio wallet (http://www.frioinsulincoolingcase.com/)? Though they're designed for keeping insulin cool, they regulate its temperature at around 78 for about two days without ice (only need to soak the wallet in cold water for about five minutes).

I used the large wallet to carry down insulin vials, and it ended up working pretty well. With the large one, I was able to put in at least three 10mL insulin vials and two 3mL insulin pens without overstuffing it. Though I did not take it with me to the parks, it was small enough to throw into my backpack without taking up a ton of space.

As for your main question, you are allowed to carry small cooler bags into the parks. I did carry a glass insulin vial with me into the parks for a few days, and I did not have any CM's prohibit me from entering the parks with them.

 

[moe10378]

We have kept diastat with us at all time for 10 years and have never had to go out of our way to keep it cool. I keep them inside of an insulated baby bottle bag when we are out and about on hot days. we live in Alabama so it gets hot. If we will be out for long periods and when we do Disney i will put the bag into the fridge over night ( with out the meds) and then it keeps them cool all day long.

It just worries me because last yr my son went I to a bad seizure, I went to administer the diastat and it was leaked out from heat!! My son ended up in icu for three days :-( Neither of them come out of it w/out meds

 

[ladyjubilee]

We never had that problem.... but think the differences in our experiences may be our kids heat tolerance range. Since we have to keep me son cool the items in his pack stay cool too. To that end we shade hop, cut through air condition building, until this year had a sun shade on my son's stroller, used umbrellas.... and went during late spring. During times it got too hot, we had off times meals in the air condition.

 

[jmartinez1895]

It just worries me because last yr my son went I to a bad seizure, I went to administer the diastat and it was leaked out from heat!! My son ended up in icu for three days :-( Neither of them come out of it w/out meds

In the 10 years we have used it I have only had one leak. The pharmacy told me that e very now and then a defective unit will leak. After that I check ours before we leave and after we get home, but have never had another problem.
I left one int the car for about 10 hours and it was 105 outside. It did not leak ans looked perfect, but I was afraid the heat may have affected the medication so we replaced it.

 

[ttintagel]

I don't know if it's comparable to insulin, but Frio wallets work great for that. I got mine especially for a Disney trip.

FRIO Insulin Cooling Case

 

[ladyjubilee]

It just worries me because last yr my son went I to a bad seizure, I went to administer the diastat and it was leaked out from heat!! My son ended up in icu for three days :-( Neither of them come out of it w/out meds

I can totally relate to the worry... Intellectually I know it is unlikely my son will have a seizure at WDW, but I still have bad dreams about not being able to get E.M.S. in the Parks again.

Could you talk to your pharmacist? The pharmacist should be able to tell you if you need cold storage, and have the appropriate storage device..... and if they don't the neurologist office should be able to check with their therapeutic pharmacology contact. Then you'll have real answers instead of just lay person recommendation..... and if it were me I'd concerned about getting the distat too cold if I didn't have professional guidance. Temperature ranges are an issue for my son. Unlike insulin, the distat is rectal. I would think that having it too cool might shock the system and well at a minimum cause cramping.... not in any way a medical opinion, just worrier mommy concern.

 

[ttintagel]

Could you talk to your pharmacist? The pharmacist should be able to tell you if you need cold storage, and have the appropriate storage device..... and if they don't the neurologist office should be able to check with their therapeutic pharmacology contact. Then you'll have real answers instead of just lay person recommendation.....

YES; this is always a good idea.

 

[SueM in MN]

It just worries me because last yr my son went I to a bad seizure, I went to administer the diastat and it was leaked out from heat!! My son ended up in icu for three days :-( Neither of them come out of it w/out meds

The leaking is a known defect that was a problem with some syringes.

http://diastat.com/hcps/about/cracked-tip

Everything I have read about Diastat says store at room temperature.
You should get a package insert with it that talks about storage; if not, the Pharmacist can check storage conditions for you.

 

[ladyjubilee]

I asked our local pharmacist and she said we didn't need to go to any extra measures to keep the Diastat cool.