Following on from our appt wi Dr Salma in July, when I asked about Reagans milk.....it says for babies up to 18mths/18kg, and she's neither of those! Dr Salma has made and appt for Reagan to see the dietician again which is 3/10/11.
Reagan had her 12th transfusion on 30/7/11 , her HB was 8.3 and she received 130ml.
At the beginning of Aug Reagan saw Anouska, the physiotherapist, again and she has now fully caught up with her age and was discharged, yay!
Aug 24th saw Reagan receive her 13th transfusion, HB was 7.8 this time she received 150ml, her weight gain has been amazing she is on the 25% line now! 22lb
14th Sept was her 14th transfusion, she now weighed 22.5lb and received another 150ml.her HB was 8.5.
And so that brings us to the appt with Dr De la fuente on 15th sept. He didn't tell us a great deal that we didn't already know but it was reassuring to be seeing him.
Her bloods were repeated and it showed her HB to be 11.5. So having 150ml blood had only brought her up 3! In my opinion, it wasnt enough. Having an HB of only 11.5 is still considered to be low.
We decided that she would have her immune system checked, they didn't, however, do that test on the day we were there and so they had to sort it for us to have Reagans blood taken at Frimley and then couriered up to Great Ormand street. Basically they want to see of her immune system is suppressed. Because she has had so many chest infections it's an indication that it might be, Josu (dr de la fuente) also said that DBA patients with the gene mutation that Reagan has do quite often have problems with their immunity!
If her immune system is suppressed then she wont be able to go on the steroid trial at all because steroids lower the immunity anyway. So we'll find out about that at the next appt.
We also checked her ferritin, it was checked at transfusion #10 and was 367, it should be between 15-250. Chelation therapy usually starts when the levels get somewhere between 1-2000.
I had them check her ferritin before her 14th transfusion so I could take it along with me the following day to Josu. It was 1043, so quite a significant jump. Josu checked it again the following day and it measured 1257!!!!! After just one more transfusion?!?! Blimey.
Apparently you can get a false high if you have an infection or something but Reagan appeared well! Although she did get a chest infection less than a wk later.
Also he HB was 11.5, so that was what she had been taken up to with the previous days transfusion which isn't really high enough.
So when we see Josu on 3/11/11 he will have the results and we will finally know if Reagan can go into a steroid trial.
Her next transfusion was just 3 wks later on 7th oct, HB was 8.2. Because last time she only went to 11.5 and because she was only lasting 3 wks at a time I managed to convince them that she should have more blood. Usually they give 15ml/kg but it is possible to give up to 20ml/kg. Which is what she had in the end, so she had 215ml. So hopefully it should be 4 wks before she has to have another.
Her ferritin was checked again but this time it showed as being 714!! I just hope that the previous 2 were false highs and this one is correct. We were also told to have a test done to see if she has any infections or viruses, think it was called a CRP test but not certain. Any way that came back as normal range, less than 4!
On sat 8th oct Reagan came down with a really nasty bug and was violently sick for 17 hrs with terrible diarrhoea, which she then shared with Alex and Kaylum!! Lol and now 11 days on she's still got bad diarrhoea! It really hangs around for her!
But she's growing at an amazing rate and the dietician decided that Reagan didn't need so much milk! She would have a bottle mid morning to go to sleep, another mid afternoon, one to go to bed with then another 2 through the night, that's a total of 1litre over any 24hrs!! Basically she was completely relying on the milk to give her everything she needed and at some point she has to rely on sold food to do that eh!
So now she has cows milk through the day but still infitrini through the night but she seems to have dropped the night ones a little.
She still has one to go to bed with but most nights she still has a lot left in the bottle when I go up so it doesn't need re filling.
Most nights she only has 2 bottles now and sometimes only one.....don't be fooled into thinking that means she's sleeping better tho! It's the opposite, she crys more but doesn't want her milk and eventually she goes back off but she makes a big fuss about doing it....have no idea what it's all about but it's really bloody annoying, not to mention knackering!
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