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.
tots100
Wednesday, 20 May 2009
Friday, 1 May 2009
Physio home assessment
B has his first assessment today for physio at home. The physiotherapist is amazing and B takes to her straight away.
Wednesday, 8 April 2009
Health Clinic
We're back in the health clinic today regarding the motor delay, faltering growth, puffy feet and now iron deficiency anaemia.
B is 13 months now. He has been put on the waiting list for Physiotherapy. He's been taking prophylactic dose of Ironorm for the last week. And been switched to follow on milk instead of cow's milk. He is doing well and eating a normal diet. He's been more "lively" since the last visit. He is now sitting up mostly unaided and can save himself sideways but we're putting cushions behind him just in case he falls backwards. He will now weight bear through is feet if he is held standing. He can roll from front to back and vice versa and get round a whole room this way. He is pushing up onto forearms and kicking his legs. We're happy he has made some progress in the last two months. Caeliac screen result is outstanding
This time I remembered to bring in his sibling's red books. I wanted to prove that both older children dropped down the centiles and are proportionate height for their weight. We're talking about everyone's milestones. A was a bit late he crawled at 15 months and walked at 18 months. L was much quicker. She cruised at 10 months and was walking by her first birthday. We put this down to the fact she was a second child who needed to act fast to get away from her older brother! I reported that I was a bottom shuffler and walked before my second birthday. B's daddy couldn't remember when he walked. I told the registrar that I thought B being left on the floor to play with his siblings was making him lazy and impacting on his development.
B is 13 months now. He has been put on the waiting list for Physiotherapy. He's been taking prophylactic dose of Ironorm for the last week. And been switched to follow on milk instead of cow's milk. He is doing well and eating a normal diet. He's been more "lively" since the last visit. He is now sitting up mostly unaided and can save himself sideways but we're putting cushions behind him just in case he falls backwards. He will now weight bear through is feet if he is held standing. He can roll from front to back and vice versa and get round a whole room this way. He is pushing up onto forearms and kicking his legs. We're happy he has made some progress in the last two months. Caeliac screen result is outstanding
This time I remembered to bring in his sibling's red books. I wanted to prove that both older children dropped down the centiles and are proportionate height for their weight. We're talking about everyone's milestones. A was a bit late he crawled at 15 months and walked at 18 months. L was much quicker. She cruised at 10 months and was walking by her first birthday. We put this down to the fact she was a second child who needed to act fast to get away from her older brother! I reported that I was a bottom shuffler and walked before my second birthday. B's daddy couldn't remember when he walked. I told the registrar that I thought B being left on the floor to play with his siblings was making him lazy and impacting on his development.
Monday, 6 April 2009
Friday, 27 March 2009
Letter from the health clinic
Just after B's first birthday I get a letter following up the appointment at the health clinic. They list the "problems" as concerns regarding motor delay, faltering growth and puffy feet.
The specialist registrar reports that B is hungry and ratty but settles after a breastfeed. He seemed active in the clinic but he's not that active at home. She says he appeared pale but his conjectiva were pink. He had a small anterior fontanelle but was well perfused centrally. She noted B had purple swollen feet that were cold to touch. I told her they are always like this and it doesn't matter how many pairs of socks that you put on him, he continues to have cold puffy feet. He has some excema on his feet and I told her that he has previously been treated for a fungal infection of his feet. His peripheral pulses were normal and his femorals were of good character and volume.
His heart sounds were normal and chest was clear. His abdomen was soft and non tender with no organomegly. His neurological system as grossly intact with normal power tone and reflexes. There is no evidence of wasting. His buttock muscles looked normal and there seem to be normal hip creases. Still pointing out his weight growth and without having anything to compare it too (I didn't have him weighed at all since birth) she can't assess whether or not this is genetically where he is meant to be. She has no explanation for his cold purple puffy feet at present.
She mentions again that she is confused regarding his cold puffy feet and has included autoimmune profile in the blood works. She is referring B to the Physiotherapists so they can see him regarding his gross motor delay. I don't want to see a dietician and she agrees that this is acceptable given his dietary history appears appropriate for his age. I promise to use follow on milk instead of cow's milk from now on at home.
The specialist registrar reports that B is hungry and ratty but settles after a breastfeed. He seemed active in the clinic but he's not that active at home. She says he appeared pale but his conjectiva were pink. He had a small anterior fontanelle but was well perfused centrally. She noted B had purple swollen feet that were cold to touch. I told her they are always like this and it doesn't matter how many pairs of socks that you put on him, he continues to have cold puffy feet. He has some excema on his feet and I told her that he has previously been treated for a fungal infection of his feet. His peripheral pulses were normal and his femorals were of good character and volume.
His heart sounds were normal and chest was clear. His abdomen was soft and non tender with no organomegly. His neurological system as grossly intact with normal power tone and reflexes. There is no evidence of wasting. His buttock muscles looked normal and there seem to be normal hip creases. Still pointing out his weight growth and without having anything to compare it too (I didn't have him weighed at all since birth) she can't assess whether or not this is genetically where he is meant to be. She has no explanation for his cold purple puffy feet at present.
She mentions again that she is confused regarding his cold puffy feet and has included autoimmune profile in the blood works. She is referring B to the Physiotherapists so they can see him regarding his gross motor delay. I don't want to see a dietician and she agrees that this is acceptable given his dietary history appears appropriate for his age. I promise to use follow on milk instead of cow's milk from now on at home.
Wednesday, 11 March 2009
Blood test results
This week I get some results from B's blood tests. They show low haematocrit and Serum Ferritin. He is prescribed an iron supplement.
And Cystic Fibroses is not confirmed. Immunological results are still outstanding. I'm relieved it's not CF. Still living without a diagnosis but in this case the news is good.
Monday, 23 February 2009
Physiotherapy
B has been referred for physiotherapy assessment and they want to see him for his first appointment. Current waiting time for a physiotherapy assessment is 4-16 weeks.
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