CF and exhaustion on distances greater than 250 meters

Question

Dear Expert Team,

My daughter is 6 years and 11 months old and has CF. She suffers from exhaustion on longer distances and I have to cart her in the buggy or carry her. A treadmill test that was not carried out at the CF clinic confirmed the exhaustion, but lung function was ok. The CF doctor thinks my daughter is too lazy to walk, but why does she vomit and cry when I force her to walk? I want to help my daughter, but since I suffer from CF myself and am not allowed to lift heavy weights, it is very difficult for me to manage that every day and not know what is the matter with her. My daughter says her knees keep buckling under her.

leomax75

Question from 7.1.09:
Dear Professor Wagner,

Thank you very much indeed for the quick answer. For four years now, my daughter (6 years 11 months, CF) has been doing intensive physical therapy twice a week for one hour, combined with muscle-building training (long distances by foot, treadmill, etc.). However, she still complains about knee pain. It has been 11 months now and there has not been any improvement despite the walking. My daughter’s belly is bulged out extremely, and she has skew and flat foot. Due to this, an expert immediately recommended a therapeutic buggy for the motoric function, but I am still fighting with the health insurance company about that because the doctor refused to write a statement of support. The X-ray of the pelvis was normal. My last question to you, which is very important to me, is: what kind of other tests could I have performed in order to make sure there is no muscular disease or diabetes at hand? At school as well as in kindergarten, the exhaustion shows as well. If I make her walk, she vomits heavily during the night.

Kind regards, and thank you very much for your effort,

leomax75

Answer

Hello,

let me first answer this question before I move on to the one about the sleep disorders.

Generally, of course, one cannot tell over the internet why a little girl does not want to or cannot walk, but there are probably good reasons for the CF doctor to think it has something to do with motivation (not feeling like it). How was it in kindergarten? What is it like in school? It is worthwhile asking the teachers whether your daughter is playing with others normally during break?

If the parents’ and children’s interests clash in a way that both sides want the exact opposite – your daughter to be carted around comfortably; you for her to keep herself fit through walking – then often some outside assistance will be helpful so that the usual indulgence does not turn into all too blatant consistency. Maybe this topic is also a good point for the question of a mother-child treatment program? In a situation like this, practicing daily situations together where the mother does not make all the rules will possibly be a good opportunity to get out of this dead end street.

I will also address this issue in the other answer.

Unfortunately, I cannot say anything to this question from the distance. In order to see whether this is really a problem of the muscles or rather of the knee, one can perhaps get ahead by determining the muscular enzymes after physical strain, but that has probably already been done long ago. Perhaps one should also consult a pediatric neurologist, since this could also be something not related to CF.

If the mentoring CF doctor is running out of ideas, he can get in touch with the experts in our team – perhaps we can advise him about making another attempt to better help your daughter (and yourself).

Kind regards,
Prof. Dr. T.O.F. Wagner.

24.02.2009