I still remember that dazed feeling of early diagnosis. My heart aches for those newly diagnosed families because it often seems as if life is falling apart. It is hard enough to first hear the news of an MPS or other rare disease diagnosis, much less to deal with the logistics of what that means in your everyday life. Like we were, many parents are all of a sudden thrust into a world of therapies, doctor appointments, IEPs and special education, infusions, and other time-consuming activities that leave little time for anything else. Add to that the emotional toll of processing the diagnosis, and it is no wonder that many of us are in a daze for at least the first year.
I sometimes reflect on those things I wish I had known. Some are emotional, some are medical, some are just those not-so-tiny logistics. In an effort to share anything worthwhile that we’ve learned in the last few years, I thought I would start with the little, “not-really-MPS” things that sometimes just make this life a little easier. Here are some of those items that range from a few dollars to hundreds of dollars. Also below is a discussion of possible ways to fund these items as well as where to find them.
Key clip: This may seem like a no-brainer to start off with, but holding onto an MPS child (much less if you have other children as well) can be a challenging task. I quite frequently misplaced my keys in the battle or threw them in my purse and then later, had to hunt for them with a wrestling child in one hand. These little clips may only be about 3 inches long and cost only a dollar or two at Home Depot or online, but they sure make a difference to me. I never have a hard time grabbing my keys or other important items, even when I am holding onto Case, because I can clip them to my purse, my pocket, a bag, or my beltloop. It may seem like a little thing, but in daily life, it can be a stress-saver.
Stroller hooks: You quickly start to learn that you need places to put all your stuff, especially when going to medical appointments and the like. Padded Mommy hooks available on Amazon are the most reliable and easiest to use that I’ve found. Target used to carry them as well, but have switched to a blue hook that we’ve tried and it easily breaks. With some strollers or wheelchairs, just be careful since too much weight can tilt them backwards, a dangerous event!
Forehead thermometer: Some of our kids (or any typical child even) have an incredibly difficult time with getting their temperature taken. Oral thermometers may be out of the question and underarm versions take some time, ear thermometers can be inaccurate if not held very carefully, so what are we to do? We began using a forehead thermometer – the same one is also used at the hospital we frequent. I carry one in my purse at all times and it comes in handy both at home, when we’re out, and at the hospital when I offer to use it instead of a nurse’s underarm thermometer when they realize that it will be quite difficult. At about $35-50, it is a good investment considering it uses normal batteries instead of the tiny, hard-to-find ones used by some other thermometers.
Binders: This may be an obvious one, but you will start to accumulate an incredible amount of paperwork. From medical records to IEPs, medical research to services applications, you will need somewhere to put them. Large, 4″ binders with D rings are the easiest to open, shut, and find needed information.
Handicapped placard: This may or may not apply to your situation, but I often see parents who wait a long time after their child would be eligible to get a placard out of an emotional reluctance or guilt over using a placard. First, I would urge you to visit your state’s website (just google handicapped placard and your state) to understand the criteria for being eligible for a handicapped placard and in most cases, print out the form to take to your child’s doctor. Second, although it can be an emotional issue, I suggest that you just GET OVER IT (sorry to be blunt!). Will the use of a placard be helpful and allow your child to participate more fully in their life? Your child’s physician will make the ultimate decision as to whether to fill out and sign the application, but as advocates for the best life for our children, we should consider whether this might help. We applied for a placard when several factors collided: (1) Case was too dangerous to be walking anything more than a short distance, even hand-held, into a business; (2) Case would sometimes tire or get so distracted and want to sit down multiple times on more than a short walk into a business; (3) Once it became much more needed to use a stroller/wheelchair, it was difficult to transfer Case from his seat into his stroller/wheelchair with a car next to ours – we needed the extra space; (4) Speaking of extra space, Case would often almost slam the doors into the cars next to ours because he would throw huge fits getting in and out of the car or simply because he could not understand to not do so.
Zicam: The last thing we need is our MPS child coming down with a cold, much less ourselves as caregivers. We have enough going on. I am not a doctor and I am certainly do not use useless medicine, much less some of the “home remedies” or other homeopathic choices on the market. BUT, I am a huge fan of Zicam. I discovered it before Case was diagnosed and I have used it myself and with all our boys to keep those nasty colds from going past the first stage. We have personally found that if it is begun as soon as you notice the cold starting (sore throat, a little drainage), and taken every 3-4 hours until symptoms stop, the cold never goes past that first stage of a little throat drainage into the runny nose, coughing, nasty cold. I personally use the Citrus Rapidmelts and I also use those for my older boys, but Case would chew them up (you let them melt in your mouth), so I use the Strawberry Chewables with him. They are kind of waxy, so it is sometimes difficult to convince him to chew the whole thing (we tell him it is candy, of course), but over time, he got used to it. I’ve learned not to travel anywhere without them because you really do have to catch the cold at the beginning. For kids who will not chew them, there is always the Oral Mist or a different chewable called Zavors but I’ve never tried them (they used to have nasal swabs that we always used, but they were voluntarily recalled).
Eating/playing tray: Isn’t it wonderful when you find an incredibly useful item at a reasonable price? It is usually because it is not marketed as a “special needs” item, or it might be three times the price! That is the case with this wonderfully helpful tray we found available by One Step Ahead. It is soft and easy to clean and has edges that prevent food and toys from sliding off. We have used it almost since Case was diagnosed and we use it with his carseat, stroller/wheelchair, and on airplanes. It has an adjustable strap that fits around him and whatever seat he is in, edges, and pockets along the sides and it is only about $20, can you believe it?
Glad Press’n Seal: If your child has a port-a-cath and you haven’t already heard of this practice, then you’re probably using a tegaderm to cover the EMLA or numbing cream to let it take effect. Similar to saran or plastic wrap, Glad Press’n Seal covers the EMLA, but can seal it in against the skin and does not hurt or pull on their skin to remove it, unlike a tegaderm. Three pieces of advice when using this product over EMLA instead of a tegaderm, (1) Tear or cut a piece around 5 inches wide/high to make sure to have enough room to seal it, (2) When you place it over the EMLA, immediately seal in a circle around the cream/port and then seal outward, (3) Watch your child’s movements carefully while the EMLA takes effect. Because it is not as secure like a tegaderm, movement or rubbing over the area or lots of activity can dislodge it and the EMLA won’t remain in the right location. Because our kids are very medically involved, reducing any pain or discomfort, especially immediately before unavoidable pain/discomfort (accessing, infusion, etc.) is a great thing.
Laminating machine: You have no idea how many things you can laminate that will be useful for your MPS child until you own a laminating machine! We started off with the (almost 300) cards for his communication book and picture schedule (which was gradually replaced with the iPad’s Proloquo2Go) and now we use it for sequencing charts, his daily schedule that he can check things off, writing and drawing practice sheets, etc. There is almost no end to the things you can do with a laminating machine!
Multifunction printer: From printing research, reports, IEPs, and pictures, to faxing applications, to copying relevant records, to scanning medical records when you run out of space, a multifunction (copy, scan, fax, print) printer has been such a helpful item to have with this MPS life. Not taking into account the printing function, I probably use the copy/scan/fax functions at least every few days. It just makes it so convenient when you can just do those things as soon as you think about needing a copy of this record (copy!), or getting rid of all the paper copies of medical records (scan!), or faxing a verification to a case manager (fax!).
iPhone/iPad: Do I need to write any more? Our kids, other children with special needs, as well as typical kids can learn in many different ways using these Apple products. If you are financially able (or if you are supported by fantastic friends and family who sponsor a fundraiser for you), this is a great choice early on in the process. As I’ve written before, it is helpful both for the apps your child can work on, as an entertainment device for long doctor/hospital visits, a storage device for medical records and other necessary documents, and helps for MPS research and contact in a pinch (but be SURE to protect it with an Otterbox or Gumdrop cover!).
Some of these things you may already have or can pick up on a whim today, but for the expensive ones, it may seem out of reach. This is one area where your friends and family can help.
Often after diagnosis, people are searching for tangible ways to help a family that they care for deeply. One idea is to either ask them to help you with a fundraiser, not only for new medical expenses, but also for those items that insurance will never pay for, but are so incredibly useful in the day-to-day MPS life like those above. Some friends or family may have the ability simply to pitch in and help you purchase some of these items.
If you have other suggestions for supplies that are helpful for newly diagnosed (or long diagnosed) families, please post a comment below! Also, if there are other topics for newly diagnosed families that you’d like to hear about in future posts, comment on those below as well.
Most are at your local hardware, office supply, technology or other store, but because taking Case and two other young children on errands is often difficult, I am a huge fan of Amazon.com. We participate in the Amazon Prime program that costs $79/year but results in free 2-day shipping and other perks. Here are some links to these products:
Disclosure: Some of the links on this website are affiliate links, which means that I may earn a commission if you click on a link or make a purchase. I am a fan of Amazon.com because of their great prices and honest customer reviews and I personally shop on Amazon.com. Because I purchase many of our items from Amazon and it provides an easy way to create a widget to show items, I am a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com. All of my opinions are genuine based on our own experience.