Paed appt

We had an appt on Tue this week to see Dr Salma, we haven't seen her since mid July.
It was just for to catch up and check Reagan over again.

She was weighed and measured, her weight is beginning to slip down again, she was 13lb8oz and 65cm long.

Dr Salma said she thought Reagan looked better than she remembered seeing her before (not so pale) I disagreed though!!!

She referred her for physio because her upper body is still pretty weak, this is probably. because her body has to work harder than most babies her age and so development get over looked!!

She was also referred for some kind of learning support to help stimulate her. Even though her brain isn't effected because of everything she will become tired and concentrating will be difficult so she'll need some extra help.

Her blood was taken and her HB was 7.9 and her retic count was 78. So it's dropped a little but not too much.

I spoke to the parent support for DBA, and again received so much info, it's so great to have her to talk to.
She said that they never let her daughters HB go below 9!!! So where as i thought mY e Reagan wasn't quite as severe as other sufferers, if she was transfused when she she got down to 9 it would be done probably as often as every 6 wkish.

She told me of other signs/symptoms to look for that tell us she isn't tolerating such a low HB, and said it seems odd to let her go so low when surely little and often is kinder surely. At the moment she is being transfused then being allowed to go right down to then be transfused right back up. It's all peaks and troughs rather than more evened out.

I called Dr Pilidis to talk to her about it and we're going to see her on Wed morning. So I'll let you know the outcome.