Ataxic CP and exhaustion...

[JellyCurls]

Do a diagnosis of ataxic CP and complete exhaustion go hand in hand? Is there anything we can do to help energy levels?

DD is 6 and lives in a state of permanent exhaustion, got sent home from school today as was so ill. She does no after school activities and too tired up play most weekends. Blood tests show not lacking anything. Not sure what to do to help, getting upset that her little brother at 2 can out last her.

Pead and GP just say its related to her condition

So wish I could help. Bumping you to the top in the hope you get better advice. Have you been in touch with Contact A Family. They may be able to put you in touch with other parents going through this for advice and support. Best wishes.

It is generally accepted that all children with cp use far more energy than nt children. They need a greater intake of calories to make up for this....not sure if its around 20%... But something like that. Fighting for balance must be so tiring for her. I don't have any solutions but DGS gets home from nursery shattered. He sleeps pretty badly which makes things worse.

Have you tried tweaking her diet? DS1 has hms, dcd, low muscle tone and because of it he burns calories so much quicker and constantly stays really skinny. He has poor balance, and just has to use so much more energy to keep his joints stable when moving around. Sometimes he does get totally exhausted to the point he can't stand and I do give him a day off school if he looks to be heading that way.

It's helped him by making sure he does get the exercise to build strength and stamina, and feeding him lots! Stuff like porridge for breakfast, high fibre food and good carbs. Nuts if she likes them. ds1 likes almonds.

Hopefully it will pass soon, she may be going through a growth spurt too, ds1 is worse with growth spurts.

Thanks ladies, she never stops eating (we call her the walking stomach) and has been on a high calorie diet since 6 weeks old. Will see if I can increase her calorie intake some more.

She also has hyper mobility in joints and low tone so it's maybe not surprising she is exhausted

I will add that at last measure her BMI was only 12 so she is burning off what she eats

Does she wear piedro stability shoes? The high ankle support takes some of the balance problems away by stabilising the joint. Support clothing, like a lycra vest can help with proprioception and stabilises the trunk. Lycra clothing is a bit warm this time of year but not so much as the DMO type clothing, which is also good for balance and posture but very warm to wear. Can your physio recommend anything?

She has orthotic insoles but doesn't get piedro boots anymore so she wears kickers boots for support.

Physio has discharged her again as says she holding body and joints well. Things improved with posture since she started SN gymnastics once a week. Never had specialised clothing and nobody has ever mentioned it to us

ds2 is 10 & has CP, he is always tired & any activity leaves him shattered. He is very hard to get moving & is a bit on the lazy side.
Its hard, we know he tires very easily but we need him to increase his exercise levels to help improve his muscle tone etc.

We've been told, little & often is the way to go!

Would agree with max. The more dd2 does, the more stamina she builds up.