Since Eddison`s diagnosis we have been faced with many new challenges and we have had to find ways of being creative to overcome these. We have done this by our experiences, endless searching of the net, connecting with other XP patients and families, continued dialogue with our excellent health care professionals, suggestions from friends, family and just plain old simple trial and test, test, test.
Here we have collated a few handy hints that we have found work for us and we hope that they will be helpful to others out there, who are faced with some of the same challenges.
Of course we aren’t endorsing any particular solution as every XP patient is unique as is their story, these are just a few things that have made our life easier!
In Case of Emergency…
When out and about we were concerned about communicating Eddison`s needs in the event of an accident, whereby we were not able to speak for him. We found this great site that stock a very extensive range of medic alert accessories. They have some nice fun ones for kids too. http://www.theidbandco.com
We got a Velcro band style which allows us to insert critical medical information and the XP clinics details. We also purchased the seat belt sleeve which allows you to attach vital information to the seat belt, or car seat harness; increasing the chances of being seen if he were to be removed from the car by a third party.
We have also created a small sign to affix to the rear window. This reads:
IN CASE OF EMERGENCY
A child in this car has XP and CANNOT be exposed to daylight. On removal from vehicle please do all you can to protect him from harmful daylight and UV (ultraviolet) emitting artificial light sources.
Protective hat and gloves are within this vehicle.
We have had several instances where people have tried to get our attention, or tried to open a car door before we have had a chance to ensure Eddison is fully protected. In order to avoid just appearing rude or to illuminate confusion, we created a sign which we can hold up to people outside of the vehicle. This reads:
A PASSENGER IN THIS CAR CANNOT
BE EXPOSED TO DAYLIGHT.
PLEASE BE PATIENT WHILE HIS PROTECTIVE CLOTHING
IS APPLIED BEFORE WE OPEN THE VEHICLE
Finding safe toilet facilities is always a gamble when out of the home, it seems obvious, but we always travel with a potty in the back of the car. Less than ideal but at least we never get caught short and it eliminates unnecessary stress for Eddison when out.
Being little we found the Vitamin D supplements in a drink form to be a bit hit and miss. The flavours were quite strong and not very appealing to small ones, especially when they need circa 200 ml to get the full does. Following a recent visit to clinic it was suggested we try a new spray version. We tried this and it was a big hit. It has a peppermint taste and one quick spray on the tongue administers a full does. (also very easy to give the rest of the family a quick squoosh at the same time).
D LUX (Better You) Daily Vitamin D Oral Spray.
15 ml provides 100 sprays.
We found that this is available from Amazon, and you can set up a repeat dispatch mechanism with them to ensure you never run out. (Just be sure to only order from a known source or dispatched by Amazon only). The sprays come in various dose levels so check with your healthcare provider about dosage and suitability.
We have found, finding a safe shoe shop to be very tricky; either lots of glass or unsafe lights, which makes taking shoes off a hazard and very stressful event for us, not to mention no fun for little on.
Simple solution… Clarks sell home measuring guages for toddlers and children for £6.00 and £8.00 respectively which means you an measure from the comfort and safety of home and simply order shoes in the right size online. http://www.clarks.co.uk/measure-and-fit/home
We were recently passed some unwanted black out curtain lining fabric by a family friend. This is ideal to have in the cupboard so you can pull it out when visiting others, as it can be quickly affixed to windows, and if you have some over sized sections all the better as they can suit various opening sizes.
Also, source some loose roll of Dermaguard film. It rolls up small and can be used to affix to windows as a temporary measure. We recently used this to enable us to have a family day out on a Steam train for a Thomas the Tank Engine day, which allowed us to do something that would otherwise have been impossible; plus we still had a view out!!!
The search for suitable clothing seems like a constant quest, but so far this is what works best for us.
http://www.my-hyphen.com/ Hyphen supply a wonderful range of clothing for children and adults which is technical UV blocking fabric. The site is in German so it takes a bit of interpretation but its well worth the hassle as the clothes are great, very lightweight and breathable so very comfortable in the warm weather. When tested with out UV meter the clothing rates ZERO (however you should do your own checks).
We have found that over repeated washing it does in time loose some of its UV protection so regular checking is required. We get around this by using a wash in UV protector called RIT SUN, SUN GUARD LAUNDRY TREATMENT (UV). Available from Amazon and other online sources.
Being only little, and with the risk of the visor being knocked during play, and because we worry about UV reflecting off the ground and traveling the short distance under the visor to his face, we double up with a balaclava under the visor. See following:
Balaclava – In the winter we use a Merino wool balaclava for extra protection. Its very soft and comfortable under the visor. http://www.childrensalon.com/baby-ivory-balaclava.html
Buff – In the summer we use a UV buff. When tested with the light meter this doesn`t quite achieve ZERO but with a wash of the wash it SUN GUARD, it brings it up to ZERO. This is really lightweight, breathable and has no seams so comfortable under the visor. The added bonus is they come in fun designs, so great for children. http://www.buffwear.co.uk/new-ss13-headwear/ss13-high-uv-pro-baby-buff
If you use two buffs this can be fashioned in such a way that when worn with UV goggles the visor is not required, and full protection is retained. This is ideal for more action or sporting activities.
Gloves – Urgh…gloves, don`t get me started. We have not yet to find a lightweight, safe mit for small toddler hands. Socks doubled up can be ok, but they aren’t ideal as there is no thumb. For improved dexterity a thumb is ideal. So the best we have come up with is to make out own. Sourcing UV fabric is tricky as suppliers seem very reluctant to give away their manufacturer/supplier details. My best advice is to buy items of clothing over sized, like an adult UV top, or wrap and then cut down to make your mit.
Last but by no means least, the subject of FUN; when faced with cold, dark nights to make your entertainment we all need a little help to make this possible, as its amazing how many balls and toys you can loose in an evening in the garden. Here are a few links to some sites we have used and there are hundreds more out there that sell similar things. Just make sure to read the full description to ensure the items doesn`t have any UV light source.
HAPPY DARK NIGHTS!!!
http://www.glow-mania.co.uk/ Lots of fun glow sticks, balls, animals etc for endless after dark fun etc
http://www.glow.co.uk Lots of fun glow toys and magical solar powered lights, ideal for any night garden
I hope some of this helps. We will keep it updated as and when we have new tips to share, and we would love to hear more from others out there, so please comment and share with us any of your gems!
Thanks for Reading
Lots of Love
Eddison`s (AKA Ted`s) Mummy