Week from absolute hell, which saw crap news for me at a hospital appt in Manchester, a kamikaze bird of prey taking out my exhaust 120 miles from home on the M4 and assorted extended family sh*t that no one ever needs, has just been topped off by a call saying small person has cultured mycobacterium intracellulare, which is an element of mycobacterium avium complex (MAC). I’ve been told the general protocol is they don’t treat unless/until they have 3 positives from sputum, but I’m absolutely gutted that she’s grown an NTM at all, and although she’s better now than she has been in 8 months following her recent IVs and a month of antifungals, I’m yet again having to re-evaluate where we’re at in real terms.
Other than pseudo which she’s grown on and off from being 2, prior to last October she’d only ever grown h.influenza once and a.baumanii once, although it had made her quite ill. Outside of a couple of spells, even the pseudo only ever reared its head every 12 to 18 months, and the only frequent growth was the Candida that we’re still not sure is even in her lungs. Candida aside, in the last 12 months alone she’s grown two different profiles of pseudo a total of 11 times, steno 3 times, e. Dermatitidis once, has had a raised Aspergillus IgG supporting that she may have a fungal bronchitis, and now grown a myco. We’ve done a total of 13 weeks in hospital for IVs since Feb and permanently lost at least 5% fev1 in 6 months to make a total drop in lung function that exceeds 11% since Feb 2018 and makes her best 75% at the age of 11. It’s a chicken or an egg situation on the pathogen front, but it feels like a never-ending run of bad luck, and just when I feel like we’re finally getting back to something that might represent a new well baseline for her, and I’m finally accepting that she’s going to be permanently wet and productive now, I get news that makes me yet again question that and whether or not we’re actually on top of everything.
Only upside is that we’re due in clinic on Monday anyway, so we can discuss the situation in detail, but it would be really nice if someone could see fit to give us both a bit of a break in the near future. On top of everything else, we’ve been moved for almost 5 months now and not only do we still not have a school place for her, social services are also still refusing to undertake a proper assessment so we can access respite care and the other support we need, and every week it’s new bad news heaped on more bad news...I know there are kids out there in a worse place than she is health-wise, and our situation could always be worse, but this is all a bit of a struggle right now.
Oh, I just hope that after writing all that down it will have given you some relief to get it all out. Like you I feel better if I can talk about my problems. The forum here is the next best thing to being able to talk face to face with someone who will understand. Sometimes, however, it can be easier to do what you have just done... share your feelings with us strangers but who like to think we are friends too. I can only hope you will get some support from social services as having a short respite will help you to deal with your everyday problems. Wishing and hoping for better things for you. Chrys
Hello Charlie _G and that superstar small person of yours, what a lot of problems heaped upon you both. I’m truly wishing and hoping that things can and will get sorted out sooner rather than later.
I am really puzzled about the attitude of social services though. Why are they refusing an assessment? Do they really need to kick you while you’re down? Have a little shout at somebody if you have the strength. Demand action in the spirit of human rights and common decency.
Do keep in touch. I’ll be thinking of you both. Xxxxxx
I'm so sorry to read of your continuing problems. It seems particularly shocking that you still don't have a school place for your daughter, and like Sassy I am puzzled by the attitude of Social Services.
Have you tried calling the BLF Helpline? See Marie__ALUK 's post here - healthunlocked.com/blf/post... I'm sure with her background in Social Care she'd have some good advice for you.
Oh dear, there nothing we can say to improve the situation except to give you both our sympathy.
Do call Marie at BLFand see if she can help with social services. everything is so fraught with lack of staff but there must be help somewhere. Social services cannot just ignore you.
I hope you feel a little better after writing all that down and it should then leave you better able to kick some sense into people. I dont know how you manage actually.
My step -grandson was diagnosed as CF at 3 yrs old, but was much later diagnosed as having extreme allergies . I know what that did to everyone at that time, and that was with help.
Dear Charlie, As if life is not difficult enough for you both ‘normally’, but this sounds like the week from hell and I am so glad you have posted. We have been worried about you both.
Oh no, following her, what appeared initially to be some improvement after so much time in hospital and treatment, what an absolute bummer to now be told little E has cultured myobacerium intracelluare and I sincerely hope the following 2 tests are negative. I note your doubts too as an amazing Dad your doubts as to whether everyone is on top of everything.
I do hope they can reverse E’s FEVs to some extent and therefore a better baseline.
I hope you gain informations and a plan at your consultation on Monday. Will be rooting for you both. Goodness knows you both need a break. I am obviously very worried about your very precious little girl Charlie but I am also concerned about you and both your QOL with everything you have to deal with.
What is the reasoning of Social Services in refusing a proper assessment? Good idea of annienell to contact Marie at BLF. Just a thought, with an election coming up it might be helpful to contact your MP or Counsellor, ‘cos I know you haven’t got enough to do! What do they say at the school at the hospital - surely they know what should be available re schooling for E. I thought it was obligatory for the state to supply education for all children. I could speak to my daughter who is an assistant head at a primary school when she gets back from a residential. She is very proactive in children not falling throught he net.
There are sick children yes Charlie but we are talking about your little girl and you must be completely overwhelmed by all the struggles you encounter.
Please know we are all rooting for you and for this reason please post here. It is a privelege to offer support as well as receive it from our friends on here.
Thinking of you both, especially Monday. Please let us know how it goes.
Sometimes I really wonder why some people have to go through the mill.
I also wonder why some families heap sh.. on folk when it's clear they are already up to their neck in it and stressed. Social services are ridiculously under resourced in my experience . I hope Monday brings some comfort and that some joy can be found in Xmas. God love you....
Oh Charlie what a time you are having, along with the worry and stress I dont know how you are coping. I dont know why but its true when one thing goes wrong it seems that everything goes bloody wrong and most times we deal with it but sometimes we just need a break. I am sending my best wish that you get that break now, when you need it the most. Irene x
I'm sorry to know you and your little person are having such a difficult time, made needlessly worse by the avoidable stress put on you by social services. It's ironic because a friend of mine who home schools her daughter for very good reasons is constantly hounded by social services for having her child out of school, whereas you want to put your child in school and are almost being denied it. I continue to hope and pray that things will start to improve all round for you.
This is hardly a whinge. You and little E are really going through it.
I can’t believe she’s been out of school for 5 months.
Is the difficulty finding a place because of her autism/medical needs? Is there anyone at your local education authority that can help you with this eg a named person for special educational needs? Also is there any provision for home tutoring for children with medical needs while she is waiting for a place?
Hope all goes well on Monday and you manage to sort out a school and respite care for little E.
I am so sorry to hear of the bad news that you have been having.
Please accept my apologies with the late reply, and I am not sure if you have called us on the helpline, but I am in all day today, Thursday 9-4 and Friday 9-5 so please call us on 03000 030 555.
I am intrigued as to why social services are refusing the assessment for respite and what their reasons are.
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