Having a bad time after 2 months of illness (long read sorry)

[SJL]

I know after after I write this and have a vent about everything i will wake up tomorrow and get on with things but here goes......

My daughter has been sick now for 9 weeks, it started with a throat/sinus infections which took 5 bottles of anti-biotics to clear, she has been run down and had more infections constantly since. The doctors have done a number of blood tests - the first one came back with some very worrying results but the second test came back all clear of anything serious, they have shown a few vitamin issues (some to high, some to low). The doc's have been saying post-viral fatigue syndrome (which may lead to chronic fatigue).
Through all the investigations we have also realised although she has grown 10cm over the last two years she has only put on 500gms in weight (even though she can eat more food than the average adult) I think she probably gains and then loses it every time she is sick which is getting more and more frequent. Last year she saw the GP for throat/sinus/chest infections and was put on antibiotics 14 times. So far this year she has had antibiotics 14 times.

We seam to have a few good days then she is completely wiped of energy, every time bugs are going around school she gets sick. She hasn't finished a full week of school all term.

I am feeling like I cant cope with it anymore, it is really wearing me down today. She started her latest bottle of antibiotics yesterday and I havent been able to get a full dose into her, she has stopped eating (and mixed with food is the only way to get medication in to her). Today she has barely eaten or had anything to drink and that makes her really grumpy and teary, she looks so pale.

I know if I take her to the hospital to get a drip put in or try a naso tube (if she keeps it in) they will say to me that she isnt sick enough, I have the same fight everytime, regardless that I tell them I know if she keeps this up by tomorrow night she will be needing the hospital, but I hate to see her get that sick. If we get on top of it sooner she usually only needs 1-2 nights in before she starts to eat but if it gets left to long she usually needs at least a week before she gets better. But I am only her mother what would I know??? once we are on the ward they are great but ED can be painful at times.

It is so hard knowing what to do with her, she cant tell me whats wrong and her only way to communicate discomfort is to cry, when I see her so distressed I usually cope and stay calm but today I have been crying with her.

Anyway, thanks for making it all the way through my down load.

Hopefully she will get better instead of following her usual trends of getting sicker.

Sjl

[Calluna]

's Sjl. How awful for you and your DD. And the hopsy staff not listening is appauling, yes you're "just her mum" but being her mum you know her better than anyone else and they should be taking that into account. I hope you get some real answers soon and your DD is feeling much better too.

[amberj]

Wow SLJ, that's really awful, my heart goes out to you. It sounds so hard. I hope you can find some way to break this cycle of illness soon. I think you are being so strong and amazing- well done!