Search found 20 matches

by toffeegirl
Tue Sep 18, 2012 12:50 pm
Forum: Activities & Events
Topic: KD Support in the UK
Replies: 0
Views: 2880

KD Support in the UK

My daughter had KD last year and found this forum to be a wealth of help and advice. However being based in the UK I was looking for some local support. I found it at www.kssg.org.uk I am now actively involved in raising our profile via social media and we have a group on Facebook https://www.facebo...
by toffeegirl
Tue Dec 13, 2011 7:31 am
Forum: General Discussion
Topic: question about IVIG treatment
Replies: 11
Views: 2789

Re: question about IVIG treatment

My daughter had 2 rounds of IVIG and both were given over a period of around 4 hours. I read the side of the bottle on the drip (not that I don't trust anyone :) ) and the dosage and rate she was getting it was right according to that.
by toffeegirl
Tue Dec 13, 2011 7:22 am
Forum: General Discussion
Topic: Asprin and Reye's Syndrome
Replies: 6
Views: 3077

Re: Asprin and Reye's Syndrome

My daughter was on high dose aspirin whilst she was in hospital...600mg which is double the max adult dose and we were advised of the risks associated with Reyes. However when she moved on to low dose, 37.5 mg daily we were advised that this carries no more risk of Reyes than not being on it at all....
by toffeegirl
Mon Oct 03, 2011 11:39 am
Forum: Medical Articles
Topic: Steroid Use in KD---Beneficial
Replies: 5
Views: 4307

Re: Steroid Use in KD---Beneficial

Kristopher My daughter had 2 doses of IVIG in July and they told me every time, "give it 24 hours and she'll be a different kid" We did and she wasn't! It was scary watching her not respond and scarier still watching the Dr's scratch their heads and debate the next course of action. Cue a change of ...
by toffeegirl
Sun Aug 28, 2011 5:12 pm
Forum: General Discussion
Topic: Acute Kawasaki disease 4 yr
Replies: 14
Views: 4046

Re: Acute Kawasaki disease 4 yr

Momcat. Thanks for your response :) It is difficult to know what to do for the best and I think you are right that all I can do is use my Mummy instincts to make the best informed choice that I can. I agree with pretty much all you have said and am already making a conscious effort not to overprotec...
by toffeegirl
Sat Aug 27, 2011 4:37 am
Forum: General Discussion
Topic: Acute Kawasaki disease 4 yr
Replies: 14
Views: 4046

Re: Acute Kawasaki disease 4 yr

Momcat I really enjoy reading your posts :) You have obviously done a lot of research and I always find them informative and factual. I figured the same about the IVIG...that it would give her immune system an extra oomph but I'm just not sure if the same is true for the ones that were classed durin...
by toffeegirl
Sat Aug 20, 2011 4:21 am
Forum: General Discussion
Topic: Acute Kawasaki disease 4 yr
Replies: 14
Views: 4046

Re: Acute Kawasaki disease 4 yr

Hi Kelley My daughter is also 4 and is due her last MMR or Pre-School booster. She was actually booked in for it the week she got sick with KD so obviously it never happened. Our consultant said that it is okay for her to have it after the IVIG and will afford her some protection but it may not "tak...
by toffeegirl
Sun Aug 14, 2011 5:38 am
Forum: General Discussion
Topic: Behavioral problems after KD
Replies: 20
Views: 10788

Re: Behavioral problems after KD

I came across the study by accident looking for something else but think it makes interesting reading. We are still undergoing treatment at the moment. Back in on Monday for a review but fingers crossed that they will not give her anymore IV :( She has had such a time of it, poor little sausage. 5 w...
by toffeegirl
Sun Aug 14, 2011 5:13 am
Forum: General Discussion
Topic: POST IVIG treatment - questions
Replies: 5
Views: 2618

Re: POST IVIG treatment - questions

I just recognised a little of myself in your words and I know that without the encouragement of my Mum I probably wouldn't have said anything and then regretted it hugely later. Glad you got the response you wanted if not the result. Like you say though, better to know early on and deal with it quic...
by toffeegirl
Fri Aug 12, 2011 2:44 pm
Forum: General Discussion
Topic: POST IVIG treatment - questions
Replies: 5
Views: 2618

Re: POST IVIG treatment - questions

I had the same problem with the Registrar in the first hospital we were at. We saw 15 doctors in total and I would say 4 of them absolutely refused to acknowledge the KD diagnosis. Thankfully none of them were her primary carers but it was still incredibly frustrating. Once at the Children's Hospita...
by toffeegirl
Fri Aug 12, 2011 4:46 am
Forum: General Discussion
Topic: POST IVIG treatment - questions
Replies: 5
Views: 2618

Re: POST IVIG treatment - questions

Had almost exactly the same situation. Treated on Day 5 with IVIG...temp receded as did some of the initial symptoms. 48 hours later temp showing low grade fever, nothing really exceptional, just not quite right. Hands and feet very swollen and huge discomfort constantly. Couldn't move her without s...
by toffeegirl
Thu Aug 11, 2011 7:24 pm
Forum: General Discussion
Topic: Behavioral problems after KD
Replies: 20
Views: 10788

Re: Behavioral problems after KD

Hi Sara British Study into Behavioural problems post KD "The KD group was found to have significantly higher behavioural scores on the thought problem category of the CBCL compared with the sibling control group (P = 0.006). Thought problems reported included obsessions, compulsions as well as stran...
by toffeegirl
Sun Aug 07, 2011 3:07 pm
Forum: KD Stories
Topic: Nicholas, age 3, so far so good 8 weeks after
Replies: 2
Views: 1605

Re: Nicholas, age 3, so far so good 8 weeks after

I self diagnosed my daughter in the hospital she had been sent to on Day 3 of her illness. At that point they were still treating her with IV antibiotics for a severely infected lymph node despite the emergence of other symptoms consistent with KD. With hindsight I can see that they were concerned t...
by toffeegirl
Sat Aug 06, 2011 2:16 pm
Forum: General Discussion
Topic: Aseptic Meningitis after IVIG treatment
Replies: 4
Views: 3357

Re: Aseptic Meningitis after IVIG treatment

We are on Day 27 at the moment and still have not been fully discharged from hospital. She is back in on Monday for another round of IV steroids.....hopefully it will just be the one day and then we can go back as outpatients in future Her headache and other Meningitis symptoms subsided on their own...
by toffeegirl
Wed Aug 03, 2011 12:57 pm
Forum: General Discussion
Topic: Aseptic Meningitis after IVIG treatment
Replies: 4
Views: 3357

Re: Aseptic Meningitis after IVIG treatment

It got worse before it got better and we are still far from full health but she is improving every day! We were also at home on weekend leave when she started really showing what I felt were the symptoms of Aseptic Meningitis. When I took her back in for bloods and a review on the Monday I mentioned...