It’s been quite some time since I posted about Bod despite intending to, and quite a few people have mentioned her in comments or replies to me. As always, I remain fairly useless at replying to comments, but I’ll do my best, and I do really appreciate everyone’s support and interest in what’s happening for her. It means a lot.
The two big bits of news are that it took almost 12 months since our move and a tonne of pressure on my part, but she’s finally been placed at an amazing, autism specialist secondary school. We also got a new social worker who came from outside of the department and within 4 weeks had done our needs assessment, taken it to panel, and got us 2 overnights of respite each month, although there’s no sign of identifying an appropriate foster family as yet. You may recall that at the time of my last update we were being told she didn’t even warrant being under the disability team, never mind respite care, so loud cheering and party blowers on both fronts as I’m sure you can imagine. It went somewhat under the radar, but paediatric shielding guidelines changed in June and most kids with cf officially came out of shielding at the start of July, meaning she’s been able to physically go to school 2 days a week for the last 3 weeks: it’s been a bit nerve wracking for a number of reasons, including covid, but her class is only 3 other kids and 2 members of staff, and they’ve been operating in a pod system that means they have no contact with anyone else whilst in school. They also maintain strict social distancing within the pod and reinforce hand washing. I then slather her hands in antibac gel the minute she gets in the car, she strips off when she gets home, and so far we’ve stayed covid free. It’s done her a lot of good mentally to go in, though, and I was very proud that she not only got a special mention at the end of year assembly today for her resilience and adaptability (both big deals for a kid on the spectrum, no matter how academically able!!), but also came first in a whole school short story competition.
Her mental health has taken a massive dive. It wasn’t great before lockdown by any stretch and we were begging CAMHS to get involved since Christmas, but she’s now ended up on antidepressants whilst waiting for therapy to materialise. The wait is currently at least 12 months and what they’ve initially offered isn’t what she needs, but we have at least got a foot in the door and a psychiatrist that seems decent overseeing her care. Unfortunately, one of the recent manifestations of her poor mental health is a refusal over the last fortnight to do nebs and physio as a means of harming if not actually killing herself. It’s heartbreaking that she feels so low, but also hugely frustrating in turn when I’ve worked my butt off for 12 years to keep her as well as I possibly can, fighting against the old medics who wanted me to accept things that we now know were completely wrong and actually caused her harm, only to have to sit on my hands whilst she actively encourages her lungs to get worse. Her team have ‘reassured’ me that this kind of refusal is common anyway in the early teens, but my problem with that is her degree of lung damage and decreased fev1 isn’t that common anymore. It’s not like we’re starting at 90% and have some wiggle room. I can only hope that she mentally picks up soon and we can make treatment a regular feature at either end of her day again.
On the plus side, her chest is much more stable generally, although still not right. She was really good through Jan, declined in Feb, and actually worse at the end of IVs that month. Hugely frustrating, but once more reinforced that I’ve done absolutely the right thing in moving us all the way here: by March there was agreement that fungus was probably still an issue even though we hadn’t grown it since the month course of posa back in November, and after another course of oral antifungals that both improved things and proved the fungal theory, they gave her IV amphotericin as an eradication attempt alongside Piptaz and colomycin in May. The end result of that in combination with the covid situation is that I’m now qualified and signed off as competent to do home IVs (exhausting, but it turns out being exhausted at home is infinitely preferable to exhausted on the ward), and bod is significantly improved from March/April if not particularly close to where we were in Jan. The pseudo remains a more regular feature, persistently showing up on almost every other culture, and I know this is just par for the disease course, but remains frustrating when it appeared so well controlled for years. Other than that, we had the one very unusual bacteria in Feb I think I posted about (a. beijerinckii), another growth of the e.dermatitidis (fungus) in March, and a first culture of candida dubliensis to keep her airway colony of c.albicans company. As with albicans, dubliensis isn’t considered pathological in its own right, but is considered a marker of lung disease severity, and is thought to correlate to quicker decline in fev1, particularly when cultured alongside both albicans and pseudo. One of my questions for the team at some point is what they would actually consider ‘reasonable’ annual decline in fev1. I suspect it’s not what we’ve had over the last couple of years, although she’s currently still sitting around the 75% mark when well. We’re due in for IVs again the last two weeks in August, where I’m hoping they may have a definite answer for the interesting adventures we’ve been having with home spirometry during the covid outbreak and remote clinics. To the best of our current knowledge, she’s the only child in the UK, possibly even the world, that has their lung function consistently over-estimated by all the new home spirometers to a tune of 15 to 20% for both fev1 and fvc. 🤦♂️
Thank you for the update on Bod and I’m pleased things are going well on the school front. Well done with that and being mentioned at the end of assembly. Winning the short story competition was a terrific achievement too.
It seems as if things are still very up and down but not too terrible. I really hope dear Bod can pick herself up and stop self destructing. Bless her, she’s been through the mill though as have you.
Thanks, Sassy. I think school will ultimately be the making of her, they’re just that amazing already, and hopefully that in turn will stabilise her mental health a bit more: there’s no denying that being out of school for almost an entire year hasn’t helped her in that regard. Or all the uncertainty she’s had to deal with. Throw in covid on top when you’ve got a highly anxious child fascinated by ebola, small pox, and viruses generally, and it’s not really a mix designed to promote mental wellbeing. We’ve gone from a household that pre-covid watched the news twice a day without fail, to one that hasn’t had the tv on for anything other than the simpsons, judge Judy and my 600lb life in the last week...👀🙈
Thanks for the update. I can relate to Bod's refusal to willingly do her nebs etc. I think there comes a point when we've been sick for so long and we can't see it getting better, so we get frustrated and just want it all to stop. Being a youngster would make it even more difficult. I'm very pleased she's in a nice school. I think it will make all the difference. Take care.
Thanks for writing such a detailed update on Bod and maybe you should write a story yourself. You have a real talent in expressing the life of a parent and child with exceptional needs. Great news about the school and hope as she goes there more regularly her mental health will improve. Good news too about the social worker and respite care and hope you find a foster family soon. Well done for equipping yourself with the skills to give her the IV. You really are an amazing dad and I wish you and Bod all the best.
Hi Charlie_G good news on the school front for Bod. It must have been very difficult during the severe lockdown for you both and I'm sure once school starts again and the respite kicks in, life will become a little easier. I once taught a diabetic child -AGE 8-9- who was in denial of her recently diagnosed condition especially as her twin was non diabetic, it was very difficult to keep tabs on her doing what she should and she would often hide her snacks saying she'd ate them and not do her blood tests. Take care. I'm in awe of you coping with everything . x Anita
Definitely with those who say you're an amazing dad. Thanks for the update. It's good news about the school. I'm shocked about the 12 month wait for therapy though. The waiting lists in the UK are not great and I guess made even worse by the coronavirus. Wishing you and Small Person all the best.
It breaks my heart to read your update Charlie G, that you have had to fight every step along the way against what must have seemed impossible odds at the time. You are such a good dad and you both deserve a break. I really think this school will help Bod alot with her mental state and will in turn give you some relief. I wish you both well and hope that things can improve day by day x
Brilliant you have a new social worker and after all this time little E has a new school placement. Down in no small part to the efforts of her amazing dad. It must be very reassuring to know she is in a bubble at school and (please this is meant in a good way) whilst being good for E it will also give you some respite and time for yourself.
No wonder you are so proud. For her to get a special mention in assembly for her resilience and adaptability (which she certainly has) but to also come first in her school short story competition is such an achievement. Well done E.
I am however very sad to hear of the toll this pandemic and the rest has taken on her mental health. So glad she has a good psychiatrist but bloody hell 12 months wait. Grrr. It must be taking its toll on you too.
Re non compliance with treatments, I feel your team is quite right and as Dickinson has said I have heard this often re children with diabetes, in fact kids approaching their teens with chronic conditions of all kinds. I was one of them, if a little older than E. A party, a date, a night out with my mates - what physio - no time - I’m having a good time. That is not to say I didn’t do it at all but not in the way I did before or since. As a parent though I can only imagine how difficult it must be to see your beloved child being less compliant as you are so wise to the cost.
So glad bod’s chest is more stable but so sorry to hear the damn fungal problems she is having.
Congratulations re home IVs. Agree exhausting but definitely preferable to a stay in 5*, especially for E I would have thought.
Good luck for late August. Might beat you to it. Telephone consultation this week, but I don’t want to start until I have had consultation (face to face) with ENT on 10th in case it skews things.
Sounds like things have continued to be up and down. I can’t imagine how hard the last months have been for you both; the covid situation is hard enough when you’re a healthy adult, let alone with all that you have both faced.
It was great to read about the school and I really hope it’s a positive experience for your daughter. September will come around soon enough!
She’s at such a delicate age anyway, must be so difficult to manage all her emotions, hormones (eep!) and her health.
I’m glad she’s finally getting the help she needs but so sorry it’s been such a fight to get here. It shouldn’t be this way, it really shouldn’t.
Not an expert in social work with children, my qualified experience is adults but if I can ever offer any advice or help, my PM box is always open.
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