Monday, 1 December 2008
right we spent all of yesterday in Sheffield....I have to say I went with really high hopes of having a diagnosis for Samuel and good chat with Gastro. alas this was not to be because unfortunately the gastro Samuel has been referred to was unavailable to speak to us even though he was in clinic.I did find this a bit disappointing as although Sam has been in clinic twice and also been admitted we have not seen our gastro once! Apparently Samuels colonoscopy and endoscopy showed inflamation,nodules and ulceration which would be in line with an allergic condition such as an eosinophillic condition BUT his biopsies apparently came back normal .She registrar said this could be because he was having more neocate and less foods that he was allergic to at the time of the surgery so doesnt prove anything either way which is frustrating to say the least.PH test result he said 'showed just acid all the time' but he said the probe was too far down....I then corrected him by saying that it was pulled back to the correct place and then re-xrayed but because that wasnt documented in the notes they are more or less disregarding the test.I said i found that frustrating and he said 'well hes on omeprazole and so theres nothing we would do' As the clinic was over running and we had an appt downstairs with the surgeon we were told to go and see the surgeon and then come back up,by which time the reg would have discussed Samuel with the Gastro con and dietician and then formulated a plan. So we went down to see surgeon and came back.....to find they had all left clinic and gone .All I had was the receptionist hand me a bundle of forms for stool samples,FISH genetics test (whatever that is...all it said was ?autistic spectrum disorder ??) and RAST test??? for milk protein,wheat,and some others which I cant remember. we got back from Sheffield at 5.20pm....to an answerphone message from our local Dietician to say she had a phonecall from Sheffield and if we got back before 5pm then to phone her straight away if not them she wasnt back till next Tuesday afternoon. so what we gained from that visit was absolutely nothing and I still have a child who is now so poorly that school is out of the question...........they even saw him have an attack of the runs while he was there,screaming,crying and walking like he had been riding a horse all day,legs apart as he had poo running down his leg.I find it unbelievable to say the least! Problem was that the reg himself admitted that Samuel and seri were way beyond his expertise but Gastro just want available to speak to us.Registrar said that he would speak to gastro and that Gastro would probably come and speak to us....but he didnt. Seri was pretty short and sweet.Apparently Gastrostomy feeding is out of the question at the moment as she is still not back up to correct weight and has been too poorly of late.Surgeon seemed to think that there was a good chance that her stomach wont work well enough to ever accept stomach feeding.A skin and muscle biopsy was also suggested to us as a good idea now as she is having so many problems. Thats about it.Im feeling totally frustrated and fed up._________________
Apart from the frustration Seraphina had her 2nd Birthday.We got a banner from Birthdays and decorated her wheelchair both sides with happy Birthday.Bless her she thought it was great fun trying to rip it off as it made a nice crinkly sound when she touched it as it was made out of metallic paper.She had a Pepper Pig Birthday cake (though we had to pretend with the candles unlit because of her oxygen) and we also took a cake to Church on the Sunday to share with everyone,so many people have been praying for her over this last 12 months we wanted to share her birthay with them all.
she had some ovely presents including the most gorgeous T-shirt with a ballerina on from my friend Hazel which matched the skirt and ballerina tights we had bought her perfectly!
Will have to get round to posting a few more pictures on here so you can see the Birthday Girl
Samuel on just neocate and no food....and Samuel immediately post op...not impressed.Look how much better he looked when not eating!really stuck me seeing these posts side by side hmmm... alas the healthy look didnt last longer than a couple of weeks,as soon as he starts to eat a little food we are back to losing weight and looking more like the post op pic :-(