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Essbee's DS in hospital.

363 replies

SoupDragon · 15/10/2006 09:22

You may or may not have spottedfrom another thread that Essbee's DS is in hospital with kawasaki disease. He still has a high temperature, is very tearful but being quite brave. His lips are still too sore to drink/talkbut they're trying to do without the IV drip so he's trying to take sips although even a straw is painful.

Should anyone fancy sending him something to cheer him up, (and having quizzed essbee) apparently the new version of "Shoot Out" cards is out now and he got quite into it last season - was gutted when the cards finished IIRC.

iamsoupdragon at blueyonder dot co dot uk

OP posts:
Quadrofiendia · 24/10/2006 19:23

Hi Essbee, have managed to miss this, just wanted to send you and your family lots of love xx
If you are not happy about rescheduled appt, let somebody know, don't sit there worrying, presumably he is under a consultant, ring tomorrow and say you are not happy. I have been in a different position but a worrying one and I pestered until they listened, I used to feel bad about getting on at them but not anymore
Really wishing you all the very best xx

Mum2FunkyDude · 24/10/2006 19:51

I have great admiration for your strength and on how well you are handling this. I do hope that you will get through this sooner rather than later.

You should really pester them about moving you forward for the ecg, he only has one heart and they should be able to find you a hospital or surgery somewhere that can do one for you in the meantime.

Best wishes and my thoughts are with you.

pageturner · 24/10/2006 23:01

Oh essbee, so sorry things are still so rough. I'd offer to come and see you this week, but I doubt my three are what your ds needs right now!

Can I pop over and give some moral support when they're back and school? I'd love to give you a break, but in the meantime how about a much-maligned pt x

californifright · 24/10/2006 23:17

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Rhubarb · 24/10/2006 23:20

I was hoping you'd had good news for us!

lucy5 · 25/10/2006 00:03

Esbee, i'm really sorry, I have only just seen this thread. You sound like you are doing a grand job! hope your ds is feeling a bit better, poor little thing.

VeniVidiVickiQV · 25/10/2006 00:07

Oh thats shit, quite frankly.

Ring up and tell them its not good enough.

Mellowma · 25/10/2006 10:35

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essbee · 25/10/2006 14:04

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naswm · 25/10/2006 15:59

Hope you get some sensible, helpful answers at the docs Essbee. VERY pleased he seems a bit better though atm. Hope it continues. Catch you on msn soon. LOL Nxxxxxxxxxx

Pinkchampagne · 25/10/2006 16:02

Hope you get on ok at the doctors, essbee.
I am pleased to hear that your DS is a little better today & I'm glad the cards got to you ok.xx

frumpygrumpy · 25/10/2006 16:19

Sory haven't read the whole thread as I'm just rushing out.

My DD was in hospital over Christmas last year with Kawasaki disease (which as it worsened they wondered whether it was Stevens Johnston Syndrome). She took ill 6 weeks before. She had an immunoglobulin transfusion and was horribly unwell for weeks. It took her until July this year to be completely herself again (she was well enough to return to school by January but had body wide skin blistering and lost some hair and all nails which took until Summer to be just as gorgeous as it all was before!)

Luckily we had great doctors and she has no lasting problems with heart (Kawasaki) or eyes (SJS).

I wish you all the very best, its tiring and heartbreaking watching them. Love to you.

frumpygrumpy · 25/10/2006 16:24

I'm going to try to link you to my thread which might be a useful read.....haven't done a link before....

my thread from then

essbee · 25/10/2006 19:52

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frumpygrumpy · 25/10/2006 23:03

Yeah, she started out with a bug and never fully recovered, it went on and on and then had a very nastly barking cough and took what they thought was tonsilitis. I kept returning to the doc because she had a very high temp for 5 days which I was only just keeping under control with 2 hourly Calpol/Nurofen. To cut a very long story short after just returning from another visit to the doctor she turned worse again (fell asleep and I couldn't wake her, lifted her jamas to see a horrid rash appearing before my eyes, temperature sky high) and I made a dash to the hospital, where we remained over Christmas.

They never gave us a final decision......I think its maybe more likely SJS because of the blistering but who knows. The nurses all felt it was Kawasaki. I will try to investigate privately whether she took a reaction to Penicillin). In truth, none of the doctors seems to know whether she could experience it again, what caused it and whether my other children are likely to get it. Her main doctor said she must have been very run down for it to develop and she was, 6 weeks of not getting better from a bug.....

She shed just about every bit of skin she had in great sheets and I had to apply dressings twice a day to prevent infection. She lost some hair and all her finger and toe nails (probably due to the severe temps, dehydration and weight loss). Her doctor at the hospital recommended probiotics (we used Actimel) to get the tummy filled with good bacteria again after all the drugs, vitamins, a very healthy diet (we do anyway but made it more so).

Summer came, I made sure we went somewhere sunny for a holiday - she has very fair skin and although she needs lots of high protection, I wanted the goodness of the sun to help build her up again. Since then she positively shines - her skin glows, her hair is shiny, her nails strong again.

I've totally hi-jacked your thread. I guess I just wanted to share because I didn't know anyone at the time with experience and would have loved to have had the chat....

Sorry, ignore what you're too tired to read .

Hope he gets well and truly on the mend very soon. Don't rush him back to school (although I agree they do need routine to kick in again to complete the getting well or else they feel 'ill') . I feel guilty I maybe sent my DD back too early from her bug and maybe thats why she got so run down and ended up that way. Now, unless its just a mild cold I keep her off until I'm sure she's totally fine.

What age is your DS btw? My dd was nearly 5 at the time and I was told Kawasaki tends to develop in under fives....

Take care of you too. I got very upset about two months later when I felt able to cry about it.

frumpygrumpy · 25/10/2006 23:06

Monumental post but forgot, she had the same as your ds, blistering all over the inside of her mouth and swollen, cracked lips which makes life hard. You can't get much in at all, its just too painful.

essbee · 26/10/2006 12:10

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essbee · 26/10/2006 12:12

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Mellowma · 26/10/2006 13:38

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Mellowma · 26/10/2006 13:38

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essbee · 26/10/2006 13:46

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Mellowma · 26/10/2006 14:13

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essbee · 26/10/2006 19:09

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Mellowma · 26/10/2006 20:14

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essbee · 26/10/2006 20:44

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