Sorry all....it's been such a long time since I've posted and now I have to try and remember all that's gone on!!!
So Reagan went in on 26th April for transfusion #9 but her HB was 10.4 so they wouldn't do it and we had to go back the following week.
So we went back on 3rd may, we had an appt with Dr Pelidis any way. Tis week her HB was 7.4, there's no way it woud have. Dropped so much in a week so the previous weeks must have been a false result!!
As far as her appt goes, it was all good her weight gain was doing really great, I do t remember what it was tho!
It was decided that we would go back in just over 3 weeks so she could be pinked up for our holiday, also that dr Pelidis woukd write up the prescription for the steroids and leave them on the ward ready for us to collect at the next transfusion and then to start her on them upon our return from holiday.
Reagan also had pnueomonia again in mid April, she had a short stay in hospital again.
20-22nd April saw us at the annual conference for DBA......we met lots of other families with children who had DBA and adults too! It was so fab to meet them all and they we're all so welcoming. We learnt so so much it was amazing.
Most interesting was to learn that a little boy with a disorder very similar to DBA had been cured by seeing a nutritionist.....needless to say we are gnu explore this avenue!
And also we met with the UKs leading DR who specialises in red blood cell production. He gave a few talks and something that struck me was that they have fairly recently discovered that many DBA patients have a weakened immune system.....I immediately thought of Reagan and her repeating chest infections. I asked him about it and he said that if it is the case that reagan should go on steroids as they will only weaken her immunity further and could be dangerous. He agreed that Reagan would be a candidate for the test to see if her immune system is weak.
So, we asked him he would be willing to take Reagan on as a patient. It was obvious to us that he had more up to date information on DBA and would benefit reagan alot. He agreed and said. Needed to get a referral from our GP.
So we decided that she wouldn't be going on the steroids yet!!
We went back to st Georges on 27th May for Reagans 10th transfusion and dr Pelidis hadn't left a prescription for Reagan so that suited us!
Reagan had had another chest infection earlier in may, this time they didn't even both with the usual Amoxicillin (which they have always prescribed before and it's never worked and then she's needed another antibiotic) I think because she developed pneumonia last time.
Anyway she had 130 mls on 27th may, i think her HB was about 9.5, so the highest its ever been when shes getting pinked! she weighed 18lb on the nose, so now she was half way between the 2nd and 9th percentile.......remember when she way down below the chart all together? She's done so well lately.
I managed to get some antibiotic to take on holiday with us because she had a bit of a cough and I was worried it might develop into an infection again. When we arrived on holiday (1/6/11) she still had a cough and her voice was husky and a bit snotty, but, she shook it off all on her own. She's never done that before I don't think, and then she was so healthy for the entire holiday!!
Her next transfusion was due 24th June. We decided to go to Frimley park because we were obviously waiting for her referral to go to the new DR, Dr Josu De la fuente, at st Marys. Plus it had been a while and she was bigger now so they might not have such a hard time getting the cannula in.
Her HB was 9.9 so they wouldn't transfuse, we were to go back again the following wk. It took 3 attempts tho and the still didn't manage to get a cannula in.
So we sent back the next wk (30/6/11) her hb was 8.4 but they said (at bloody 5.30 at nit) that they wernt going to do anything until they'd spoken to Pelidis in the morning! Gggrrr
Long story short.......if you're on steroids you shouldn't have transfusions- dr pelidis thought she was on steroids (despite not ever writing the prrescription) and said not to transfuse her!!!
Finally got it sorted and she had her 11th transfusion (130mls)
She had a clinic appt with DR Salma at frimley chic RENs centre on 12th July, her weight was 19lb13oz, which takes her to smack bang in the middle of the 9th and 25th percentile, so she's jumped up another percentile, so impressive. Her height was 74cm, which is half way between the 0.4th and 2nd percentile. So she's a bit shorter but still doing so great!
Dr Salma was very surprised with her, I told her that she was signed off from portage some time ago and signed off from physio just the wk before because she is physically doing everything an 18 mth old should be doing!!yay!
We've had an appt through for dr De la fuente, 15th sept, I'm currently trying to bring it forward.
Reagan is due another transfusion next wk.
Over and out!!
