New Diagnosis: Raynaud's

3/19/11

So this week is the start of an all new rollercoaster ride for our family. 

Eli has had problems with his hands this winter, which we wonder if it has something to do with his sensory deficit problems.  We would walk Ella to the bus stop every morning, but when it got cold out we wouldn’t be out there long and Eli would start crying.  His hands would be bright red, and at times purple tipped and we weren’t outside very long.  We would come inside and he’d be holding his hands out in front of him crying and unable to comfort himself because he sucks on his fingers but he couldn’t because they hurt.  Once his hands warmed back up he was fine again, but this happened multiple times and even with gloves on  (which he doesn’t like to keep on).

We went to see the pediatrician to see what she thought and she said it sounded like Raynaud’s Phenomenon, but she hasn’t had someone this young (1 ½) have it before so she wanted to do some research first.  Last week we got a call with information on how to protect him if it is Raynauds and to come in to get blood tests to rule out other things that may cause this problem.  The blood tests all came back fine, which is good.  That means something isn’t wrong causing this, but it also means he has Raynauds and it’s something we will have to live with.

Raynauds is: (cut and pasted from the Mayo clinic website http://www.mayoclinic.com/health/raynauds-disease/DS00433 ) Raynaud's disease is a condition that causes some areas of your body — such as your fingers, toes, tip of your nose and your ears — to feel numb and cool in response to cold temperatures or stress. In Raynaud's disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas.  Treatment of Raynaud's disease depends on its severity and the presence of associated conditions. For most people, Raynaud's disease is more a nuisance than a disability. Raynaud's disease is more than simply having cold hands and cold feet, and it's not the same as frostbite. Signs and symptoms of Raynaud's depend on the frequency, duration and severity of the blood vessel spasms that underlie the disorder. Raynaud's disease symptoms include:

§  Cold fingers and toes

§  Sequence of color changes in your skin in response to cold or stress

§  Numb, prickly feeling or stinging pain upon warming or relief of stress

During an attack of Raynaud's, affected areas of your skin usually turn white at first. Then, the affected areas often turn blue, feel cold and numb, and your sensory perception is dulled. As circulation improves, the affected areas may turn red, throb, tingle or swell. The order of the changes of color isn't the same for all people, and not everyone experiences all three colors.

For more information on Raynaud’s check out the website or do an internet search.

Our instructions are to: keep his hands and feet warm and not exposed to cold, don’t put tight things on his hands or feet, keep him away from smokers (cigarette smoke causes more dilation in the arteries), and no caffeine.

So now we are most likely going to move to warmer climate after my graduate studies are done in 2014, and until then protect those little fingers as much as possible.  Florida is a good bet, being as we’ve always loved it down there and since we vacation there every year we will probably start spending some time while we’re down there driving around finding towns we may want to move to and get a feel for options there.  We still won’t be forever away from cold, since we definitely will be spending parts of December back in Indiana to be near family for the holidays, but worrying about it a few weeks a year instead of 6 months of the year sounds like a good deal to me.