My question regards my 12 year old cerebral palsy child. Josh is a moderate to severe spastic quad & weighs approx 65 lbs. He is non-verbal & non-ambulatory, however, we feel he is somewhat "in there" (Responds to jokes, follows some simple directions). Obviously, his cardio is very limited. His nutritional intake is good, he eats a normal diet and drinks Ensure or Boost daily just to be sure. Josh sleeps in a full size bed with a quality 1.5 inch memory foam mattress topper. He typically sleeps on his back without a pillow (his preference) and his legs supported by a pillow under the knees (contracture issues).
Lately, I have been finding his left hand, and 1/2 of his arm freezing cold in the mornings. His hand is very cold and progressively warmer up the arm. I have tried to research it and am leaning towards a heart or blood circulation issue. I don't know if it's numb / pinched peripheral nerve since he can't tell me, however this arm is his most affected (disabled) limb. I have NOT noticed discoloration, and it does warm once I begin moving him about while dressing.
Additionally, his feet and legs are cold daily when sitting. The longer he sits in one place the colder they are. We move him about frequently, positioning him from laying, sitting, reclined; but there are times traveling, visiting the zoo, shopping etc that limit options.
Is this a sign of a heart or circulatory issue? Will Ginko help? Should I consider consulting a specialist?
I have two girls with "CP" and my oldest is the same way her feet gets cold too. Her doctor told me that this happens to most kids with "CP". When that happens just move his position and hopefully that would do the trick and to me I don't think that its anything to worry about.
My son's cardiologist told me it is a common occurrence in CP and nothing to worry about. It is however a circulation issue and therefore it helps to rub the affected limb with some oil or lotion until it is warm again. Moving him into a different position also helps. Usually, what I do is, after a hot bath, I rub his furthest limbs (hands and feet) and then put thick socks on, summer or winter. I found that it helps to keep the limb warm for longer.
I must say that you deserve an applaude for taking such interest in your sons well being and care, if only more parents did that. I noticed that you posted this back in Jan 2008. I have some information that you may find useful for your sons circulation issues. All of the info I am writing is based on my own personal experiences and I hope that it will come in handy for you and your son. I'm 32 years old and have mild spastic CP. I get this problem with cold limbs quite often, more so the older I get.
I've noticed when I am immobile for long periods of time (such as when I'm on the computer or watching tv) I get cold limbs more often. It usually starts in the toes and then the feet, then the fingers and hands, up to the legs and arms. Once it reaches my core (stomach, chest, back), it becomes even more critical. Regardless of the stage, It is very uncomfortable and causes my muscles to spasm more often at harder and longer intervals than usual and is normally quite painful. It increases my pain and discomfort 10,000 fold compared to what I consider to be normal amounts of pain/discomfort. I imagine that this is what it feels like for your son, only amplified due to his CP being severe as opposed to mild.
As for the causes: Part of it is that the muscles are not moving which doesn't allow effective blood flow, the other part is that staying in the same position places constant force on that particular muscle area which prevents proper blood flow (i.e. sitting places force on the butt, the upper/lower hamstrings and back which makes it more difficult for blood to circulate through those areas). It also causes nerve issues because it can cause pressure points that activates those nerve endings in that area which does cause more spasms. The more sensitive the nerve ending, the more likely it is to have an increase in spasms.
Even when it's warm in the house I get cold, I like the house to be 74-76+ (bare minumum and even that's a tad too low). My folks like it at around 70 or so (which is pure hell on my body) and complain that the house is too warm when I adjust the heat higher. It's a constant battle but the colder I feel, the more my muscles tighten, the less I try to (or am able to) move, the more pain I am in. Ignore what Mo25 said above about it's nothing to worry about, it's a huge thing to worry about. I understand she/he is speaking from a providers point of view but she has it all wrong. From a personal point of view, it can make a huge difference as far as quality of life is concerned. There is the fact that it makes the heart work harder to pump in blood while it's being suffocated of it at the same time. That can lead to possible heart issues in the future. Cold, stiff muscles cause a great deal of pain and/or discomfort. The more pain/discomfort I'm in, the more miserable I am. I'm certain that it is the same for your son even though he has a difficult time to articulate it. His eyes and facial expressions can tell you a lot if you know or learn how to read them, if he's in greater pain or discomfort you'll see it in his eyes and face.
A few things that I find helps me that may help your son:
1. Thermal long john pants and shirt, Wool Socks, Regular warm clothing over the thermals
* Remember: Tight Clothing increases risks of tight muscles, increased pain, and increased circulation issues. Loose, warm clothing is always better.
2. Bearpaw house boots (again, must be somewhat loose)
3. Try to avoid being sedentary and move more often. Even a few minutes without movement can feel like a lifetime in hell.
4. Stretch, stretch, stretch, as often as possible (tight muscles = blood circulation issues and painful spasms as well as possible joint dislocations or joint looseness)
5. Keep the house as warm as possible at all times
6. Heating pads
7. Long hot shower (or bath if he can take one) plus stretching while in the shower or tub after a few minutes in the heat, to increase circulation and to re-activate paralyzed muscles or to loosen and break up stiff and tight muscles
8. Fleece blankets or electric blankets (If he has any type of bladder issues, avoid electric blankets to avoid possible electrical fire).
9. Turn off all fans, even at low it causes increased problems for me.
10. Make sure his bed is away from the window where cold air can seep through the glass.
11. Re-seal leaky windows
12. Place thick curtains around entire window to prevent drafts from the glass.
13. Small oscillating, plug-in, room heater (preferably with auto turn off and temperature adjustments).
14. stocking cap (beanie) and/or gloves for cold ears/hands.
15. Layers, add more when he's cold, remove some when he's hot.
"Useful Tip": When I start to feel pain and my body starts to exhibit symptons from being cold, my nose, ears, fingers and toes are the first to feel it. They show the most severe drop in temperature first. Using your hand/fingers to check for warm/cool spots on this areas often through out the day is a good course of action to follow. They tend to be a precurser to what is to come. They are extremely good hotspots that will tell you whether he is beginning a cold spell or hot spell and how severe it is and will inform you of what action to take in order to keep him warmer or cooler as needed.
Eagle for President!
This guys advice is dead on and I don't think I've ever heard any of it from my doctors and therapists of the past. He's learned like a lot of us, the hard way and now we can benefit from his experiences.
I completely agree with eagle 51! I figured this out with just common sense. I thought well when my hands, feet & whole body is cold I tighten up trying to get warm & cold is painful...so I can only imagine what it feels like to just sit in the same position while your body is cold without movement. I call my daughter an incubator baby because she too has CP & likes warmth. She always likes to wear warm socks & at night fleece pants & blankets. When she's warm under the blankets I will stick my hands underneath & massage her legs before bedtime. She absolutely LOVES this!!!! The expression on her face is priceless!!! It's a sense of relief from her spasticity!! Those are the only times I can actually say the tightness in her legs are gone!!!
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