I’ve ducked in looking for advice regarding taking some medication to Florida (changing in Texas en route). My 10 yo has fairly severe CF, and as there’s no community on here just for that, I figured you lovely people on the BLF might be the best people to ask. Although I used to be a seasoned traveller, I’ve never taken small person abroad before, so I’ve done a lot of research and checking (with our airline and the TSA) and as a result know that prescribed medication and nebs etc. can all be carried in hand luggage, but that raises an issue all of its own:
My original plan was to put everything bar what she would need travelling in the hold luggage, purely because of the sheer volume of meds and equipment required for our 2 week trip. Then I suddenly considered the total nightmare that would occur if her bag was misplaced en route. I had a look to see if you can get any additional hand luggage allowance for medication, but couldn’t find anything to suggest you can, and it would need to be a full bag just for her medical supplies. So my revised plan is to carry 5 days worth of meds in my hand luggage to cover the eventuality, but do they have to be in original prescription boxes? By which I mean, I can’t just carry original foil strips (tabs and capsules) and foil packaging sleeves (some of her nebs) can I? She’ll be on nebbed aztreonam (antibiotic) when we go, but that comes as dry powder in tiny glass vials with a separate diluent in plastic nebules - would they accept 15 of those not in any other original packaging? The original packaging houses a full month’s worth, so the box will be used to transport the other 30 vials needed for the rest of the trip in the hold and is absolutely massive. The same applies to her hypertonic saline nebs, and a couple of other oral medications she takes. I’ll be carrying a copy of her repeat slip and a letter from her consultant in with our travel documents.
What do people think? Any advice, tips or experiences would be gratefully received regarding carrying meds into the US and travelling abroad with meds and nebs in general.
Had a look at some cf sites. Obviously, as you have found out already not as staight forward as travelling with a normally fit and well child, but it can be done.
I haven’t travelled in the States but last year I was going to go to Milan from UK twice re bronchiectasis cause. I couldn’t go in the end due to other health issues but I did a bit of research, albeit to Europe.
I telephoned the airline and they were very helpful and I think that is absolutely necessary as they all have different policies on baggage in the cabin, medication, 02, nebulisers and wheelchair access.
I was going to order a wheelchair because sometimes you have to walk a long way and if your daughter is having a ‘difficult’ day, it might prove helpful. You can have one to the plane or assistance to the seat. The benefit would be you will be boarded first and will have time if you wish to clean down the area where your daughter will be sitting. Make sure this service will be available when you change flights.
I planned in good time to get a letter with regard to condition and medication from GP or consultant, along with my repeat presscription.
The airline I was going with allowed hand luggage and you were allowed extra space for a nebuliser in the cabin (pre arranged).
I totally understand your problem with the huge boxes which do have to have labels on. Hopefully you will be able to take your daughters bits of toiletries etc in your hand luggage and have all her medication in her hand luggage. I was concerned about the huge boxes and was going to talk to the pharmacist and airline to see if they would accept a smaller amount of medication put into smaller boxes if they had the pharmacist label on. You would need to check.
One of my main concerns was hypertonic saline and bronchodilator for nebulisation, as they are quite hot on liquid. I would check with the airline as they might allow them out of the box as they are fully labelled. I was going to put all my medication in plastic see through bags, along with any medical letters and prescriptions.
I note you have glass vials for your daughter’s abs and therefore expect you will have to take a travel sharps box with you also. You will have to check again with the airline for everything you have to take. On e you have gone through security, you can then put them into your daughter’s bag. I would take extras in the case too (you wouldn’t think I only lasted 2 weeks in the girl guides would you)
You don’t mention 02 and I am hoping that is because your ‘small person’ doesn’t need it.
Found a few links - apologies if you have read them in any event.
CF has many similarities to bronchiectasis in terms of treatment, hence why I thought here would be a safe bet. The UK cf trust forums died a death years ago and I don’t tend to use them as a result. Thanks for taking the time to reply and putting so much effort in
I hadn’t considered speaking to the pharmacy and asking for smaller boxes that are labelled up to solve the problem - we’ve used the same chemist for 9 years with her and they know us really well (unfortunately!) so I imagine they’d be willing to help if that’s a possibility. I think carrying a few days worth in my bag is the best option, as she’s also got other issues including autism that mean she has to have certain things in her bag to keep her chilled: we genuinely would need an extra bag to take all her meds on as hand luggage because my bag wouldn’t hold both our non-medical bits and bobs. Sharps are thankfully not a problem with aztreonam - the vials are designed so that you can completely remove the bung and reconstitute without a needle. I know other dry abs are too, but unlike all the others we’ve used over the years, these ones actually work. I’m hoping that, like you say, as the nebs are individually labelled they’ll be willing to accept them not in boxes, but I have got ziplock bags that meet the rules on my shopping list to cover the liquid carrying regs. Her neb is an eflow, so no issues with carrying it on the plane and I don’t need to notify the airline, but I have been told to declare it at security prior to inspection and I fully expect TSA to show some interest/inspect her hold bag at least once due to the quantities of meds even 2 weeks requires.
I’m going to give the TSA Cares helpline a ring prior to going to double check I’ve got everything covered, but you can only do that from 72 hours prior to departure. My main issue was how to plan for the (hopefully unlikely) possibility of delayed/lost luggage, and I think you may have given me the possible solution, so thanks again!
You’re welcome Charlie, although you seem to have it pretty much covered. It’s like a military operation with so many medications.
I’m surprised there doesn’t seem to be many forums now for people with cf since it is not advisable for them to mix with one another, I would have thought there would be lots of social media groups, especially on facebook. I learn something every day!
Good luck with your travels and I hope you will let us know how it goes and look forward to hearing what a brilliant trip you all had.
I have just spent 3 months in Florida Nov. - Jan with a layover in Atlanta.
I took all my COPD medication with me...in my carry on luggage no problem at all. And a copy of my prescription.
You would need special clearance with and controlled drugs.
If you daughter needs any assistance then you can contact the special assistance dept of the airline you are flying with. They are very helpful...they may also ask for a fit to fly certificate for your daughter.
The medications must be in their original containers with the prescription information on it. If I still understand correctly, removing prescription drugs from their original containers in the US is a crime. Some states have some minor exemptions, but if the drug is a "schedule drug" the crime is a felony. Given our current opioid problems, I wouldn't so much as carry an aspirin out of it's original container.
Thanks for the replies, both. I’m deliberately not taking the single controlled drug she takes (for relatively mild ADHD, nothing to do with her chest) with her consultant’s approval. Her respiratory consultants are all happy that she’s fit to fly based on full spirometry, and that will be repeated 10 days before we go just to make sure. I’m going to sort out an emergency pred and secondary abs script before we go too and order extra ventolin to be safe.
MsLeonard: would you feel carrying medication out of its box would still be an issue even if in clearly labelled foil strips (by the manufacturer)? I’m just thinking ahead to park visits where I’ll likely need to take only one or two of certain tablets for the day.
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