Letter from the health clinic

I've got a letter today about B's review at the health clinic. The results of the investigations show CF phenotype no mutation identified. Anaemia with low haematocrit and low ferritin. Renal function, liver function, bone profile and TSH all normal. Immunology including auto-antibody screen and Elat screen - pending.

She reports that B is pale and bright-eyed and interested in his surroundings, his siblings, and her. He is well perfused with warm peripheries. His feet were not purple and she did not feel they were particularly swollen. Lying prone he would rest on his elbows with his neck to one side but not pushing up. He did reach out for a toy outside of his reach and kick his legs a little but gave up. He showed good resistance to her hand held against his feet. Place in supine he just lay contentedly. He sat well unsupported and had sideways and backwards saving reflexes. He has normal forward and downward parachute reflexes and normal tone posture and movement. His calves were a normal size.

In summary B does have some gross motor delay. He weight has significantly dropped through the centiles and he has iron deficiency anaemia.

So the plan for action is get B referred to a dietician. I agree to this so that we can be sure he is getting enough calories and appropriate food types. Check his stools for fat globules and alpha 1 antitriptazones to look for evidence of fat or protein mal-absorption. I get advice for helping his gross motor development. I've got to get B weighed in two months. And review him in the health clinic in 3 month's time. He is prescribed iron Sytron (sodium feredetate). And I have to get a change of prescription from prophylactic dose to treatment dose.

Physio home assessment

B has his first assessment today for physio at home. The physiotherapist is amazing and B takes to her straight away.