MPN Voice
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Been awhile !

I pop in out as time allows . My daughter still no better and still not on any treatment except codine, ipbrofen, paracetamol . We have had the colonoscopy , endoscopy and video camera and as I knew , no she does not have chroins or UC . However the gastro team where so sure they had the answers as her fecal cal protein level was so high that she had to have an IBD that they cancelled the mouth ulcer and bone marrow biopsies ( which I had been waiting months for) . Cross is not how I feel, frustrated and let down . I have been up to gt ormond st Monday as I phoned them due to my daughter coping less and less well with her emotions. So tired at the moment . Knees giving her grief all the time and up to four massive mouth ulcers at a time. School also hounding me about being absent but because I home school as well , she is not ( thank god ) behind . I am now waiting again fir a date and this time involved PALs up there as the rhemotology team will not treat her till ths us done. Friends of the family, school friends etc are all now seeing her not coping where before she could cope for abit now... . At just eight she weighs the same as my four year old . My great nan has more energy. The pain , I am sick of watching her suffer .

How long does it take , we have been unofficial told Bechets back in July and thar the bone marrow was really important for treatment.

If you have any thoughts on this please say as I have battled all last week to get a new date for this side of Christmas and with school for getting her help in the system for special medical needs . There are dusts when her fingers hurt so much she cant write . Other mums complain to me about x y and z and I look at them thinking tonight I will more then likely be up holding my daughter why she screams and cries out in pain and there is nothing I can do! All because she played in the park like a normal child.

Yes I am a bit fed up x

1 Reply

Dear Mother of 4 ,

I certainly feel for you , we too have experienced watching albeit a grown up daughter suffer for 3 years whilst the jerks in our local hospital failed to diagnose her spinal but benign tumour . Eventually she collapsed at work and ended up in first in ST Thomas then Kings College Hospital London where they do have proper doctors an d surgeons . If i could have had her condition for her I would have been more than willing even if it killed me.

All I can suggest is that you pursue Great Ormond st as hard as you can as they are likely to be the best in the country . I was so impressed with the attitude of the London Teaching hospitals that they really cared and wanted to help.

I can imagine how desperate and tired you feel its as if the medical world think your a nuisance just because they are unable to diagnose. It must be even harder when your daughter is so young. Its also very tough on the rest if the family as it dominates your lives so much.

all the very best of luck I do so hope you get the medical help you need

Town Crier


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