Poor Circulation in Rett Girls

Many of our Rett Girls have very cold hands and feet due to poor circulation.  Sometimes they can also look blue or purple.  The easy remedy for poor circulation is typically to get up and move around to get the blood flowing.  This can be difficult for our non-ambulatory and non-weight bearing girls but even if our girls are able to get up and move around many times it doesn't help because their poor circulation is usually due to a vasomotor disturbance that is difficult to treat.  

Google dictionary explains vasomotor this way:  "Denoting a region in the medulla of the brain (the vasomotor center) that regulates blood pressure by controlling reflex alterations in the heart rate and the diameter of the blood vessels, in response to stimuli from receptors in the circulatory system or from other parts of the brain".  


So what can we do as parents and caregivers to help our Rett Girls circulation and the pain that can sometimes come with it?

Keep them warm:  Poor circulation means cold feet, even in hotter weather, so keep them warm with socks and loose fitting shoes, boots (like UGG's) or slippers.  A heated blanket works well too but be sure to check her often so the blanket doesn't get too hot.

Circulation socks:  There are lots of circulation socks on the market for adults so if you have an older Rett Girl you can easily pick up circulation socks at your medical supply store.  As for our younger, smaller girls we have found these Nike compression socks typically used for sports.


Keep her feet elevated:  When your Rett Girl's feet are elevated it's much easier for the blood to get down to her feet and circulate back up.  In the car you can keep feet up with this great foot rest.  We have also heard that it works great when used with a booster seat attached to a chair.

Don't let her feet dangle:  When feet are dangling not only is it harder for the body to pump blood but typically the back of the leg is stressed and can further hinder circulation.  One of the places where feet dangle a lot is the bathroom.  If you don't have a potty seat with a foot rest check out this one (for very young girls - this one is small).  Or you can find a foot stool at a height that would keep your Rett Girl's knees at a 90 degree angle. 

Massage:  Massage works to speed circulation, you can even try this cream by Burts Bee's to stimulate the circulation even more.

We hope that these suggestions help in your Rett Girl's circulation.  If you have found any additional resources please share them with us.

Some "Tips" for the Holidays

With December upon us, and holiday decorations sprouting up all over, we are all gearing up for a special season. Yet, the biggest thing to overcome during the holidays is just pure stress. Everyone out there feels it, but when you have a disabled child thrown into the mix, stress can rise to a whole new level. Stress of disappointment over your daughter’s condition, stress of your daughter’s anxiety as the routine and activity level changes, stress of how family and friends act towards her, stress of travel, stress of food choices. Mix this in with some certain lack of sleep and it is a recipe for disaster.

So, think about changing things around, being more open to doing things differently, and being more open with those around you about what they can do to help make this holiday a more positive experience. Do not try to fit your daughter into your traditional routine. It is time to make some new traditions, keeping her needs in mind.

Handling anxiety and sensory overload – two key issues for Rett girls.

Anxiety often comes from not knowing what to expect. Talk to your daughter about events coming up several times before they happen. Explain to her where you are going, who will be there, what will happen, and what is expected of her.

TIP: Consider bringing along a portable DVD player with her favorite videos as a fallback. Although it is heartbreaking to feel she is not included, sometimes it is just better for her to be engaged with something familiar.

Sensory overload can strike us all. If your daughter can’t tolerate being amidst all the festivities – gift opening, big dinner, singing, etc – be sure to have a plan for her and talk with her about it.

TIP: Tell your daughter, “Today is a very special day. We have people coming to visit. If you are feeling anxious, you can stay in your room with your music or television. And then this afternoon we will have a special time where each person will come to you and spend a little time with you and give you a gift. I will help you give them their gift, too. Maybe we can even have pictures of each person and you can pick you who would like to see and give your gift to next!”

Creating a more relaxing environment:

Rett girls usually love twinkly lights. Consider having them in more places than around the tree and outside. How about in her room?

Opening presents: Traditional paper gift wrap can be a nightmare. Rett girls will get paper cuts and even try to stuff the paper in their mouths, so maybe someone else handles opening for them. But imagine the combination of loud ripping paper and someone else opening your gift? I think I would cry too.

TIP: Wrap her gifts in fabric. Even if it is just one of your colorful T-Shirts with a big bow! It will look pretty, feel soft, and it will be quiet – and she can actively help open her own present!

Help from visiting family members and friends:

This is a great opportunity to be a really big help! Even just 5 or 10 minutes here and there with your special Rett girl will be very welcomed. Consider these things:

Read her a book.
Brush her hair and put pretty bows in for her.
Help feed her.
Take her for a walk.
Give her a foot massage.
Listen to some music together.
Sing her a song.
Tell her a story from your past holidays.

Make this holiday a real team effort. Start talking with you family now about ways to help.

And be sure to check out our Holiday Gift Idea List! Happy Holidays everyone!!! I hope you each find that magical moment that makes your heart skip a beat and brings a smile to your face.

- Ingrid