Meningitis

[layzeetee]

I just want to know if anyone else has a child who had meningitis? DD1 had it seven years ago, and lost a leg (she now has a nice prosthetic) as well as finding it hard to remember faces (damage to that part of the brain). I just want to know if anyone else has had that experience. It feels very lonely, becase although I'm in a support group, most of them come from miles away, and whenever we go out, DD gets stared at.

DD#3 had septicaemia last year (Strep A, no meningitis however) and had about half of her foot amputated as a result. She currently walks well on her remaining foot and has an insert to fill part of her show. When she is older she will probably get a prosthetic foot for the cosmetic benefits. It will hopefully allow her the option to wear different shoes as currently she can only wear shoes that fasten up right across the top of her foot by her leg. She also had acute renal failure at the time and was on dialysis for a short while, but thankfully her kidneys are doing ok now. She is only just about to turn three (tomorrow) so we don't really know how she is going to develop but she seems more or less on track with milestones etc.
Feel free to PM me if you want to chat more.
Have you been in touch with the meningitis research foundation? They have been very supportive to us.

I didn't want to read and not answer it must be so hard for you hopefully if will get better

Hi beautifulgirls. No, I was in contact for something like the first two years, and they were very helpful, but somehow it just faded out. Now I'm in a support group set up by Meningitis UK, and it's helped me in more ways than ever, including helping DD1 make friends when others tended to alienate her.

Happy birthday to your DD3!

And thanks Afsana1.

beautifulgirls is lovely take up her offer of pm'ing if you think it would help, she was lovely to me when DD had pneumococcal meningitis just after her first birthday in June this year. And her blog is amazing.

We're only a little way in to DD's journey to recovery but I've found the meningitis trust an amazing support and am currently going through the process of getting set up as a volunteer for them. I want to give a little something back but also feel it will be a kind of healing process for me maybe?

We are going to a family day at a local animal shelter next month that they've organised for local families, its just one of a massive variety of things they do, maybe take a look at their website if you've not had dealings with them before?

Exactly a year ago today (weirdly) my DD1 came down with meningitis. Actually the dates have gone a bit fuzzy, but it was the tuesday of october half term. By the Thursday she was in intensive care in a coma with a ventilator breathing for her. For us, it was just the cherry on top of two years of her cancer treatment. The chemo and radiotherapy damaged her spleen, leaving her vulnerable to the Pneumococcal bacteria which DD2 caught from nursery and passed on to me and her sister. She would have had the revaccination for pneumo in january anyway! She's now on penicillin for the rest of her life to hopefully stop her getting it again. She was off school until after Christmas and has very slowly build back to full time. Her energy levels are great now. No long term effects that we have noticed (hard to tell what might be from the meningitis and what might be from the cancer treatment). She doesn't have the coordination or stamina of other children her age or her younger sister. But on the whole, we have been unbelievably lucky. I'm not particularly religious, but I'm certain that someone is looking after her! She's three and a half years after diagnosis of a cancer that had a 30% 2 year survival rate and she's survived meningitis! This is certainly a very weird week for me though - I'm trying to keep busy and not beat myself up too much for taking 2 days to get her to hospital last year. When I think just how close we came to losing her, I break out in a cold sweat.

Peppermint don't beat yourself up, I took DD to out of hours (based at our local hospital) and our gp's twice in the 48 hours before I went back to out of hours again and they admitted her rather than sending me away telling me it was a virus and calpol was all she needed.

You do the best you can at the time and you can't change what's been and gone. Your DD sounds fab, be kind to yourself this week.

Thanks Mud. I'm taking it as a lesson to trust my instincts more. I didn't take her in sooner because her temperature went down again and she didn't have a rash. Also, I thought the the headache was her cancer recurring, so wanted her to see the oncology doctors rather than an on-call paeds doctor who didn't know her history. Even the PICU consultant first thought it was more likely to be the cancer than meningitis. Gah, must stop posting now. Dragging this back up is doing me no good at all!

Sorry OP, I'm not much help to you. Except maybe to know that you're not alone in finding it hard to deal with.

I thought that it was just some bug going about, because DS had been ill the week before. Then suddenly we were calling the ambulance, and had her heart stop. I just kept on thinking that if we'd got there earlier, maybe she wouldn't have lost a leg, and she could remember what people looked like, and that she wouldn't have been bullied because she was 'stumpy'.

o layzee.. so sorry to hear what your DD has been going through. My DD2 is a survivor of pneumococcal meningitis - and she is one of the lucky ones. Despite the odds we were given in PICU she has fully recovered - I think because she was so young (only 2 months) her brain had a chance to 'rewire' and she has grown out of the initial stiffnesses and floppy arm...
It's nearly 4 years on now, but nevertheless I still look back and go over the 'what if's". I think that despite the information we get about meningitis, it is a rottenly difficult disease to properly recognise - even for doctors; it's easy to feel clued up because you know about a glass test, but that is only part of the story... don't beat yourself up about what you could have done... we all did the best we could.
I've nothing to say about dealing with the stares etc, but maybe it's an idea to post on the special needs board.. there will be lots of people with similar experience who can offer support
Hugs to all

Hi Stopeatingthatmud - Sounds like things are going well for your DD now and also Hi to Oricella too .

Gosh Peppermintpanda - so sorry to hear how much you and your DD have had to go through in the past years. It certainly sounds like someone is looking out for her. It's funny, but when DD was ill last year there were little things that happened that gave me comfort that someone was looking out for her. When she got to PICU she was put in a bay that had a number that I consider my lucky number. In the first day or two she had a nurse with the same name as my (deceased) grandmother. It was comforting in a way - but then I guess you cling onto anything when you feel that desperate.

Layzee and Peppermint- don't blame yourself. The fact you got your DD's the help they needed is the reason they are still here. Some are not that lucky. Like Oricella we had taken DD3 to A&E the day before and the GP that same morning and on both occasions we were sent away with "a virus, give her more fluids and calpol". DH stayed home with her (and took her to the GP) and when I got home from work I picked her up and saw the rash which he had not recognised for what it was. Imagine how much he beat himself up over that - but then he had been reassured by the GP only 8 hours or so previously.

Stopeatingthatmud - well done for volunteering. I haven't done much with the meningitis research foundation, but spent more of my time fundraising for the hospital she was treated at instead. I did go to a members day a few weeks back and it was lovely to finally meet the lady I had spoken to though and some other members who came along.

Anyway, my lovely survivor is busy watching her Peppa Pig DVD that she got for her birthday today. Much as last year it feels amazing to be able to celebrate with her and scarey to think what might have been.