Musings of a Marfan Mom

2012 Marfan/RD Gift and Resource Guide, Part 1


It’s that time of year again! Last year’s Marfan & Related Disorder Gift/Resources Guide was such a hit that I wanted to do it again. Here you’ll find products that parents of kids of all ages love. Response with ideas of toys/products this year has been overwhelming (in a good way!). So, we’re going to have *two days* worth of guides! Look for toys and feeding products tomorrow! Some of these products are ones that I’ve used with Baby J. Others come by way of suggestions from my readers. If you have questions about the items here or have some you’d like to add, be sure to leave a comment!

Solo Bambini
Steph and Sam rave about these glasses! The company specializes in designing colorful and durable frames for children under the age of 10, but especially infants. They do have some glasses for adults now though. Sam writes, “ [My daughter’s classes have] been sat on, chewed on, run over with her stroller and walked on.”

Marfan mom April uses Miraflex glasses for her young son. These are unbreakable frames and come in a variety of colors, sizes, and styles. The company makes sunglasses, trial frames, and straps as well. Finally, you can replace the lenses if the prescription changes without having to purchase another frame, and the lenses pop out for easy cleaning.

This is a website that Nakia uses to buy her son’s glasses. Although they don’t carry the above brands, they do have frames for INCREDIBLY cheap. Just surfing around now, I’m seeing frames for $7-10! You can’t beat that deal, especially for older kids who aren’t in such a risk of breaking their frames (though for that price, it might not matter if they break!).

If you have a young child in glasses, you know a strap is a must to at least attempt to keep the glasses on your kid! Jess suggests going to a craft store like Hobby Lobby, Michaels, or Joanne’s and buying elastic to fit your child’s head. Her son’s glasses have a tiny hold at the end of the ear piece, so she just ties a knot in each end and that holds the elastic well. Jess said it works just as well as a store-made strap, but saves a ton of money!

Jess turned me on to Puma shoes and I agree with her: they are awesome for thin Marf feet! They’re a bit pricey but they fit so well! We actually found J’s on ebay, so I’d recommend checking there.

We all have favorite brands here. Sam recommends Gap’s skinny pants (pictured). Steph reports that Children’s Place has slim toddler pants on their website. We actually were given a pair of slim girl’s pants for J from Old Navy (they don’t look very girly, minus the bows on the pockets!) that fit him like a glove! I call them his hipster pants. We’ve also had luck with the Kohls brand and sometimes Carters, too. Loeys-Dietz mom Julie also told me Macys is carrying Levi’s 514 slim straight jean with adjustable waist for babies.

Sorry, but I have to plug my Marfan/RD store too! :-) It’s through CafePress and it has clothes for every member of the family, birth to adulthood! I offer non-clothing products too (mugs, teddy bears, necklaces, ipad covers, etc.). I love custom orders so feel free to message me with whatever you have in mind. I have some additional Loeys-Dietz items coming soon!

Pain Management:
Mattress pad
Larie’s son loves his mattress pad. It really helps with his aches and pains at night. She’s not sure of the brand, but this one from Costco (pictured) should give you an idea of what she’s talking about.

Massage Cushion
If I had a regular chair that I blogged in, as opposed to the living room couch, I would SO get one of these. They’re great for back pain if you get the right one (some brands are too hard, I think). Some even apply heat as well!

As with any medication, please first consult with your doctor! Leslie, a nurse who works with Marfan patients (and, she’d like me to add, is passionate about their care!), recommends Diclofenac gel, which you just rub into the skin for pain relief. Meaghan, who has Ehlers-Danlos, loves Boswellin (pictured), which works the same way and is herbal.

Are there must-have products or life-changing toys I’ve missed? Fill us in in the comments! Don’t forget to check back for our toy and feeding guide!

* I did not receive any compensation at all from any of these companies for reviewing or otherwise mentioning their products.

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  1. My go to brand of shoes is Asics. New Balance also are wonderful and come in narrow widths. I have actually never been able to find Pumas in my size that are as comfortable as Asics. But I’ll give them another shot.

    Any idea on whether or not the topical pain stuff is compatible with Coumadin? There are many OTC cremes which are contraindicated…

    I need a Marfan’s baseball hat… I’ll look in your store.


    marfmom Reply:

    I love New Balance! For J I prefer how Pumas are lower on his ankle, so they are easier to get on and off. I can see transitioning to him to NB as h gets older. Can’t believe I forgot them on the list! I’ve never used Asics before but I’ll check them out next time I’m looking at sneakers. I’m not sure about the topical gel is compatible with coumadin. I’ll ask the nurse if the one she suggested is, but I’d still suggest asking your own pharmacist or doctor just to be sure. :)


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