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Childhood stroke and chickenpox

(18 Posts)
bubblemcgubble Wed 08-Jun-16 07:55:13

My 3 yo DS had a stroke a year ago caused by chickenpox. i I still feel upset I felt I didn't make an informed decision about immunisation as i had no idea about complications of CP. I regret i didn't pay (as not offered on NHS). Has anyone else had a similar experience?

ktmummy1 Wed 08-Jun-16 08:04:05

A friend of mine had a child who died from sepsis caused by an infected chicken pox spot. My dd had severe pox and over a year later has scars. I'm sorry about your son, how is he? I think immunisation should be automatically given to all 12 month olds. Chicken pox can be horrendous.

bubblemcgubble Wed 08-Jun-16 08:09:55

Thanks for replying ktmummy. That's awful about your friend. Just so tragic.

As time had passed i've become angry about how I feel I had no idea that stroke (or worse in your friend'a case) could be caused by CP. My son, thank god, regained use of his affected side over the past year but has a delay in his gross motor skills. He still has daily exercises and on medication but he is on the mend. But I remain angry about it all.

turfsausage Wed 08-Jun-16 11:36:04

I have a similar story and just before I saw your post I was thinking about posting something like 'how long will it take me to get over this'. My son had chicken pox about 6 weeks ago, then very shortly afterwards developed encephalitis. he was v ill and intubated in a coma in hospital. I guess that it's the same kind of thing that your DS had but maybe yours was more restricted to a particular part of the brain. My DS has recovered very well physically but has emotional / behavioural difficulties now, I think. We are waiting for a psych assessment but I think he may have ADHD now. He had a kind of hyperactive (what my DM calls boisterous!) type of personality before, and this has got exaggerated now. I think at the time I protected myself by only focusing on what was in front of me (as I knew how dangerous it could be) but now it's over and he is doing really well, I am kind of obsessing over it a bit, ie what caused it etc, what could we have done differently. We did get him to hosp v quickly though, so I think it's just the luck of the draw.

I don't know about vaccines, I think if I have another child I woudl get it vaccinated, but my BIL, who is a GP, hasn't vaccinated his DS, I'm not sure what his rationale is, but think it's something to do with being better protected later in life if you have the actual disease rather than the vaccination. I'm not sure though, I've been meaning to ask him.

In the US they vaccinate though, don't know where else, I think we don't here simply for cost.

Sorry you're going through this, glad to hear your DS is doing ok. Most people think chicken pox is so mild and my DH says that DS is fine now so I should move on, it's hard though isn't it. I was thinking I will get some counselling if it's still bothering me in a while. Maybe that's something u should think about?

bubblemcgubble Wed 08-Jun-16 11:47:50

Thanks turf. What a few weeks you've had. Must have been terribly scary for you and your son. Is he on the mend?

My son was completely healthy before the stroke with no predisposing factors to a stroke apart from chickenpox.

He collapsed at home and lost his left side completely. Diagnosed with an acute ischaemic stroke caused by chickenpox after various tests. Scarily he was the third case they'd seen post chickenpox in as many months. I guess there's a part of me which wants to shout out loud how dangerous chickenpox can be. I know reactions are probably rare but really I didn't know that potentially chickenpox could lead to lifelong disability (or worse).

I understand Australia and the US have the vaccine as part of their routine immunisations. The shingles argument about it increasing hasn't come to bear in either of those countries and agree think it''s a cost thing. But lifelong i think the need on the NHS for support and rehabilitation surely in itself must be costly.

FlopIsMyParentingGuru Wed 08-Jun-16 11:49:56

NHS will do chicken pox vaccine if you have an immune suppressed family member. In case anyone reading this is in that situation but wasn't aware.

C2H5OH Wed 08-Jun-16 11:52:01

I'm so sorry about your child OP. I had no idea chickenpox could have serious complications until I was V blasé with my HV when my kids had it. She put me straight. Never even considered vaccination for it!

PovertyPain Wed 08-Jun-16 11:52:38

I'm so sorry about what you and your family are going through, OP, and my sympathies to all the people who are adversely affected by CP.

Yet we still get arses on here playing down the seriousness of CP.

PovertyPain Wed 08-Jun-16 11:54:09

Sorry, that wasn't directed at you, C2. Xpost.

bubblemcgubble Wed 08-Jun-16 11:58:11

Thanks Flop. It's an important point that it is available to immunosuppressed (and fairly sure their immediate family too).

From my point of view I think I thought it was a routine illness (which I accept it normally is) and we just had to plough on through it like everyone else. I had no idea of the very serious complications further on down the line. I wish I had made a far more informed choice.

Miloarmadillo1 Wed 08-Jun-16 12:04:11

It's not easily available to the families of the immunosuppressed, even though NICE guidelines say it should be. We tried to get DS2 vaccinated to protect immunosuppressed DD and were eventually after much harumphing offered an appointment at the hospital in 3 months time. We went private and had it done the next day. The immunosuppressed person themselves can't have the CP vaccine because it is live.
I hope all your children recover fully. We will be getting DD vaccinated, she is slowly catching up with the vaccines she missed.

C2H5OH Wed 08-Jun-16 12:05:12

"PovertyPain Wed 08-Jun-16 11:54:09
Sorry, that wasn't directed at you, C2. X-Post". No problem. Even though my kids are older now I'm still staggered at how little I knew and how much I thought I knew!

QOD Wed 08-Jun-16 12:14:43

My dn caught chicken pox when her immunity was.low, immediately after mmr.
Her mum and my other sil had a fucking chickenpox party.
she only got a.couple of minor visible spots but the ones on her brain caused damage

Her cousin is married with a degree and a baby
she is still learning to tell the time.
they are in their 20's

I get soooooo pissed off with the regular "way hay chicken pox party what a great idea" posts

Sorry about your son, thank goodness he's getting back his motor skills, and yours too turf.

It's a shitty mostly minor illness mist of the time, but has some horrible after affects

FlopIsMyParentingGuru Wed 08-Jun-16 12:21:11

We were lucky enough to get it for DD due to immune suppressed grandmother so maybe it's worth trying a different GP if you are unsuccessful.

bubblemcgubble Wed 08-Jun-16 12:22:10

3 months isn't good enough milo armadillo.

As for chickenpox parties that enrages me. As does the let's get chickenpox out of the way mentality. Only heard a work colleague say the other day, how they were wishing for their child to catch it. I have to bite my tongue in RL. I never usually tell people i what has happened to my son but there is a part of me that wants to especially when they're so desperately wanting their child to catch it.

turfsausage Wed 08-Jun-16 12:26:06

He's pretty much better thanks bubble, back to school (he's in reception) less than a week after leaving hospital, and just continued to get better everyday. Luckily for him he doesn't remember that much, as he was unconscious before we got to hospital and then full of drugs so doesn't remember that much about the few days he was there.

Does your DS see a physio regularly? We are being referred but I'm not sure there's much to work on, he falls over a bit more than he used to but not much to worry about. My DS was completely healthy too, in hospital we were asked a lot of questions about that but he had absolutely no health problems before. Your poor boy, it's so tragic when you hear someone else's story. They are so little so they don't understand anything, and it's a shock for us too to go from a world of robust health and normality to one with a brain injury. WHen we were in hospital there was one other boy with chicken pox complications, and the intensive care doctor said she didn't think chicken pox complications were that rare - she said 'a GP will say its very rare, but ask an intensive care doctor and they will say it's not that rare!

How is he now? Does he not quite understand why he couldn't use his affected side properly? My DS quite often says 'I'm confused' in response to something that I say, so I think his processing skills might be affected, and I do feel for him because it's not something he used to say and I wonder if he's confused about why he's confused ifswim.

Maybe u should tell people about your son bubble. I do, although haven't yet encountered comments about wishing their kid would catch it. Even though kids are unlikely to get the complications ours did, the economic factor of days of work is something u can't argue against, I know people who have vaccinated for that reason too.

bubblemcgubble Wed 08-Jun-16 12:43:46

Interesting about the falling over - our son does too. I think far more so than other children. He doesn't seem particularly bothered about that at the moment. Just gets back up and continues on. He bruises terribly easily though because of the aspirin. He's had physio sessions and has exercises he needs to do.

It is though the very thing of we've entered a world that no parent wants to be part of. A healthy child suddenly needing interventions and lifelong support.

Oh and yes when I mention that my DS has had a stroke to a GP they are always visibly shocked. The paed neurologist told me they see cases 'all the time' (but think that they would!!)

bubblemcgubble Wed 08-Jun-16 12:46:51

Just to answer your other question turf. He's still too young to realise what's happened to him. He just knows he has to take medicine and go to appointments.

Bloody chickenpox.

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