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Chickenpox and the immunosuppressed please help(27 Posts)
DD has been unwell today. This evening she is developing spots over her neck and face which look like chicken pox (it is going around in this area and she is 3).
Only problem is that DH is immunosuppressed due to having a transplant. He is on an extremely high dose of steroids (higher than most transplant patients as it was an ABO incompatible transplant, which has already had signs of type one and two rejection). I have been phoning DH's hospital this evening but most nurses are being very unhelpful and no-one is giving me a straight answer as to the best course of action to take.
DS is also chronically ill but has had CP and the pneumococcal vaccine. Although DS is also showing signs of CP I have spoken to his nurse and she has said that they would treat his symptoms but not to worry. The Nurse was very lovely and also gave me advice regarding DH which was basically that he needs to be as far away from DD as possible! She advised speaking to his team, but they aren't picking up the phone.
What do we do? I know that CP can be extremely serious in immunosuppressed people and whilst I'm not panicking (yet) I need to know which steps to take next. DH is currently at work, but will be home soon.
I'm on immuno suppressants and the advice I've been given is to stay away - we have a plan that DS goes to Grandparents if he got it (we've immunised him so this is a just in case it doesn't work back up plan) . If for any reason he couldn't go immediately I'd go to a friend/hotel.
I also have to go to GPs and get treated (can't remember what it's called)
It's less of an issue if your DH has had CP, but if like me he doesn't have immunity then it's really important he sees GP /dr quickly.
My limited knowledge is to keep contact to absolute minimum (or none). I think (but could be wrong) that your GP can do a blood test to see if the CP virus is active in your DH. If he starts with any CP symptoms - which can be like a cold or mild flu to start with - seek medical advice ASAP.
Fingers crossed for you!
Reindeer - your dh must stay away from dc for now and you need to speak to somebody with renal expertise. Have you rung his hospital and asked (in the absence of a transplant nurse) for the on call registrar to ring you? Might be worth a try. Try the haemo unit too and ask to speak to an experienced renal nurse. Is that the hospital wher he had his transplant? If not ring them too and ask for the transplant ward. Then ask to speak to Sister/Charge nurse.
I called our transplant ward only to get a nurse with a shitty attitude and who was trying to tell me that I need to talk to the transplant team and gave me a number for the day unit (at 7pm on friday evening) am in the process of getting another number. Thanks for the help Northern, will try renal general wards too
DH has had CP before but we have been warned that his steroid dose would leave him with little immunity and he could get CP again but with added complications.
can they stay in separate rooms of the same house? We have no contingency plan - I might steal yours wonky.
Am off to call hosp again
Reindeer when ds had it when he was 4 so 14 yrs ago I had to stay in a hotel!
Compain about that nurse on Monday. This is a really urgent issue. If you rang me I would bend over backwards to get teh right answer - and it certainly isn't directly my job to do that!
Dh needs to ring some mates and find a space to stay tonight.
You do need advice on this one. There is immunoglobulin which could be given to your DH if he had been in contact with CP and not immune. They could also do a blood test to check if he has immunity I believe.
I'd keep him away from your DD if possible until you can get some sensible advice. Another option would be to contact your Health Protection Unit (google will get the number) and try and speak to the on call person.
Basically you need advice as there is stuff they can do! Keep making a nuisance of yourself till you get it.
If your DD doesn't have cP this time then she should e eligible for the CP vaccine to protect your DH from exactly this situation, so go and ask for it. DS too if there is any doubt over him having had it.
Best of luck!
wonkylegs Is Aciclovir the drug you were thinking of? DD had it to treat her shingles, which is the same virus as CP. Not sure if this would be suitable for OPs DH though.
ARGH! Have left three messages on three machines and have had numerous phones ring out.
DH is now home and I told him to leave. DD has eleven spots on her face/neck which werent there this morning. He says its not CP and he'll leave tomorrow if it is.
Not helpful on his or the hospitals part. I am hoping if we get through to someone at the hosp they can talk some sense into him.
I don't know what the treatment is (as we only went through it in terms of what ifs) but it's suitable for immunocompromised patients as that's what I am through my drug therapy & steroids. I was told to contact either my emergency number on the alert card I carry or my GP for treatment if exposed.
Yes it is aciclovir. He needs to be away from her and have the anti virals. I think I stayed away 5 days and it was horrible as we had just moved to Brighton and knew no one! Can he stay at a friends until you know for sure. It is very dangerous to immunosuppressed patients as it can have brain and eye implications iirc
Oh dear - dh is being a prat but it's understandable. Ring transplant ward back and ask for the nurse in charge. Be clear that you need advice tonight. Get their name as soon as they answer the phone and use it. 'X, I need you to get me the appropriate advice NOW.'
Have you tired calling NHS24/direct for advice, the Dr on call might be able to find out who to contact or prescribe the anti virals.
Out of hours docs is a possible too. They will probably poo their pants at the thought of being asked to deal with a complex transplant patient but it might make them ring the hospital and get through to someone.
I mean no disrespect to OOH doctors btw - just that the OP's husband is a complex case and definately not a usual Friday night type call.
Right, finally got through to a charge nurse on another ward. She advised for DH to stay away and avoid contact. I asked if this meant moving out and she confirmed this would be the best course of action.
DH thinks I'm making up DD's CP . However as she is already in bed, he has agreed that if she is more spotty first thing he will go and stay somewhere.
He is being bloody minded about it though! Doesn't seem to appreciate I'm worried about him, more that it's an inconvenienance.
The nurse also said that whilst he wouldn't be given anti-virals straight away, that should he start with CP that he has to go immediately to A&E.
I might put him there by bashing him over the head with my iPad if he doesn't start listening
Thanks for supporting me you lovely lot, and for giving me the right info
faster than the hospital.
I guess he just wants to be 'normal' doesn't he and normal dads don't have to flee the house over a few spots.
Glad you got somebody who knew what they were talking about. Don't let dh see dd tomorrow till you've checked her. CP is infectious through close contact - which is defined as being in the same room as somebody shedding virus for 15 minutes or more. Hopefully on MOnday you'll be able to check more with the transplant service. Has dh got any hospital appointments coming up? If there's any chance he could be incubating CP he really mustn't sit in a waiting room full of fellow transplant patients. He should ask the hospital to move him to the end of the clinic or arrange seperate waiting areas.
Oddly, I've just been looking up a couple of my old threads around the time of transplant and DH's rejection episode two years ago. I want to say thank you to Noddy and Northern in particular as you were both on all of my kidney threads (being very patient and kind, given my little knowledge of kidney failure in the early days). He will move out tomorrow, and has agreed it is CP.
Having just read our rejection thread again, and realised we are two years in now - where did the time go?! I think we nearly forgot that renal failure was a big part of our lives. We have to look after this kidney, there isn't another option. The transplant has transformed the way we live and I guess this CP episode is just a little reminder of what we have been through. So actually moving out isn't a big deal and we will just have to work round it. We are booking a nice holiday soon - seen as though we are back to occasionally holidaying abroad. So it will give us something to focus on.
Sorry am rambling now, but actually on reflection we can deal with it, and we should thank our lucky stars we have gotten two years (and counting) on the kidney. Thanks for all the invaluable information as always.
Glad he's being sensible. Sorry to create further hassle but I think your DH should be asking about immunoglobulin before he does/doesn't start with CP. the name is VZIG and it's not a treatment for CP but gives him a short term artificial immunity to it. giving the antiviral medicine if he actually developed it would be one stage on, which I presume is why you'd need to go to A and E.
I hope this link works, obviously you need to seek professional advice on it as I don't know anything about your DHs particular situation so there may be any number of reasons why they wouldn't give it.
But this is the algorithm they use to assess who gets it, On page 430 onwards:
If you are pretty confident come the morning that DD has chickenpox I would strongly advise ringing the hospital again and asking about immunoglobulin/VZIG. If they don't know what you are talking about either ring the local Health protection unit and try and get the on call consultant, or get the hospital to.
All the very best.
Reindeer. It's no problem at all.
Glad dh is moving out (not something you post much on mumsnet! ) and I agree with Surrealist that dh needs a conversation with his consultant or transplant nurse asap.
Its not CP she had all the NHS symptoms and about 13 big blotchy spots over her face and neck at bedtime.
However she is at nursery and it is rife in our area at the moment.
It has got us to think. I am booking an appointment for the pneumococcal vaccine for DD on Monday. DH also has clinic on the 5th so we can chat about it with the medical team then.
Am very thankful for all the wonderful advice - I dont regret overacting now as had it been CP it would have been serious.
Thankfully it isnt CP - not sure what was wrong with DD but she is much brighter today.
Oh that's great! I would ask about a CP vaccine for the dc too tbh. Really pleased for you. Now you can have a lovely weekend together!
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