Petit mal seizures and Neurontin

[poohntigger]

Our son has recently been diagnosed with petit mal seizures and the doctor has upped his Neurontin to three times a day since he is still having them. He has been prescribed the liquid and it has to be refrigerated. How do other people handle this. Take it with you, take breaks in the afternoon and evening at the same time everyday or what. Thanks for your input and ideas. We leave for Disney in 37 days and just beginning to think about our daily schedule concerning meds.

 

[Cheshire Figment]

Hi and to disABILITIES!

As far as the liquid medication which needs refrigeration there are three things to consider.

1. If you are in a Moderate or higher the room will automatically come with a refrigerator. If in a Value you can ask for one for medical reasons and will not get charged for it.

2. Each Park (including the water parks) has a RN-staffed First Aid station. They will store medication for you in a refrigerator, as well as storing equipment you may need while in the park. If the medicine needs to be injected they will provide a private area, as well as sharps disposal.

3. I would suggest going to www.coolerconcept.com and looking at the Frio Cold Packs. There are several people in this forum, myself included, who use them.

These are gel packs that are water activated. They will keep the internal temperature at insulin-safe levels for over 40 hours. As the water evaporates you can just soak it in water for a few minutes to reactivate it. They come in various sizes.

For example, I have a "double wallet". Depending on what I am doing it will hold my Byetta pen as well as either a syringe with insulin in it or two insulin vials. And I tend to do at least five air round trips a year and have never had any problems with TSA over it.

 

[SueM in MN]

i was going to post the same things that Cheshire Figment did - but he beat me to it while I was getting DD ready for bed.

The things I would add would be to check with your Pharmacist to see exactly what the storage requirements are as far as refrigeration. For some medications, it can be at a higher temperature for a short time, but should be stored in the refrigerator for longer times. The Pharmacist will be able to find that out for you.
Usually refrigerator temperature is about 35-45 degrees F. The Frio cold packs may work for short periods like between your room and the park, but may not get cold enough to store the medication all day. If that is the situation, I would use a case like that to transport the medication between the refrigerator in your room and First Aid in the parks. They will securely store the medication for you, as Cheshire Figment mentioned.

For timing, I would try to stay as close as possible to the times for doses aat home. We set a timer on our phone or iPod for DD’s medication. It’s very easy to lose track of time and miss doses of medication without using something like a timer to remind you.

 

[poohntigger]

Thank you for the great advice. I had not thought of using the first aid station that way or having something to transport between the hotel and parks.