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MRSA and Toxic Shock Syndrome
Started by lizz
Posted: August 5, 2007 at 04:41
Hi, my six year old son Adam has just spent five weeks in hospitial and has had MRSA for the 3rd time.Each time contracted in hospitial.

He also developed Sceptic Shock then Toxic Shock Syndrome as a complication of the MRSA in his blood.
He was admitted on 27th June and got home on 3rd August.Here is a bit off background info on Adam.

Adam was born prematurely, at 25 weeks gestation weighing 1 pound 14 ounces and has mutiple health problems including severe cerebal palsy and chronic lung disease and is on home oxygen.
Adam had grade 4 bilateral intraventricular brain hemmriges at 2 days old and was not expected to survive, grade 3 causes severe disability, grade 4 normally results in death. This resulted in him having hydracephlaus so instead of his Spinal Fluid leaving the brain area, it stayed due to blockage and caused fluid on the brain, and he had a vp shunt (Ventricular Peritonial,so fuid drained from the brain through pipeing under the skin to his lower tummy cavity) fitted to control this when he was 10 weeks old.

The first time was when just 10 days old and in an incubator on the Neo-natal unit,it started on his skin and spread through a line site to his blood, so he developed sceptacemia, it then spread to his CSF (Cerebal Spinal Fluid) causing Meningitis, nearly all of the babies on the unit were affected and myself and my family were screened but all came back negative, it was thought to be due to a doctor as so many babies got it. Adam was treated with Vancramycin and Gentomycin and recovered but was left with impared hearing due to the medications.
The second time was when he was 3 years old, due to Adam's medical problems he is admitted to hospitial more than the average child for illness and has now had 8 operations, on each admittance, Adam is always screened for MRSA as he had had it as a Neo-nate, he always 'alerts ' on the computer systems but had always been negative.
Adam had a Gastrostomy operation to fit a micky button to aid with tube feeding, and got MRSA in his gastromomy site, his wound had been sore and red on his discharge from hospitial and was screened the day he went home, we got a telephone call 2 days later and was told it was infected with MRSA so he was treated by our community nurses.
The third time is recent. Adams shunt to control his hydracephlaus blocked and he was critically ill, he became unconcious and went into a coma and nearly died, he had emergency surgery to remove his blocked shunt and had an EVD (External Ventricular Drain) fitted so all his spinal fluid collected into a little bag, he was supposed to return to theatre after a few days to have a new shunt fitted when he had recovered enough.After 2 days on intensive care he was tranferred to a neurological ward where he cotracted MRSA yet again. Adam had been screened as usual when admitted and had been negative.Microbiology have confirmed the MRSA was a different strain to any he had had before and that he had caught it in hospitial due to inadequate wound and dressing care,which we had been complaining about at the time. It had got in through a central line. Adam's condition worsened over the next 4 days and twice he stopped breathing on the ward and was rushed back to intensive care where he was ventilated as he had sceptic shock. The MRSA was only in his blood to start with but then spread to his spinal fluid so he again got meningitis. He then developed a severe but rare condition called Toxic Shock Syndrome, which is a known complication of MRSA sceptacemia. There is only approx 40 cases of Toxic Shock per year in the uk with 55% being women and tampon use, most other cases are burns victims, 5% of cases die, thats about 12 per year and a lot are left with organ failures and amputated finger, toes ect, Most doctors never see a case of it. Adam was critically ill and not expected to survive, his organs were beginning to fail due to lack off blood supply and he then also contracted Candida (Thrush) in his blood through another central line site. After over 2 weeks on intensive care fighting for his life he was transferred back to a ward, not the same one where he origanally got the MRSA as we made a complaint of neglect, and spent another couple of weeks recovering so he could under go more brain surgery to have his new shunt fitted. I am quite knowledgeable of MRSA and am totally paranoid of cleansiness when he goes into hospitial but had nver known about the link with Toxic Shock Syndrome. I am amazed my little boy, who has comprimsed health, actually managed to survive all this, he is now more disabled than he was before,but whether this is due to more damage in his brain because of the shunt blockage or the infections and shock we don't know. He now has no real use of his limbs and his eyes are affected. Due to the Toxic Shock his skin is all peeling off and we are expecting his remaining hair (he had a lot shaved off for the brain surgery) to fall out, he has his normal character although his food tastes have changed. He now has to have tests on his Adrenal Glands, his Pituatry Gland and Hypothalamus as these have been affected and tests to check his 'ageing' has anybody else experienced this, or heard of MRSA leading to Toxic Shock?
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Re: MRSA and Toxic Shock Syndrome
Reply #1 by Ruth Wollacott
Posted: August 5, 2007 at 08:33
Test.
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Re: MRSA and Toxic Shock Syndrome
Reply #2 by Mavis Law
Posted: August 5, 2007 at 11:06
Dear Liz my heart goes out to you and your family, what a wonderful loving mum you are! Your brave little Son is a fighter who has gone through so much and on top of all his suffering to aquire MRSA as well is unforgivable as it is an avoidable and debilitating illness. I am not able to answer your questions but I am sure that there will be someone who comes on the forum who can help Liz, we are all here because we have been affected in some way by Healthcare Aquired Infections and we are here to listen and help one another so please keep us posted and let us know how Adam is won't you Liz best wishes xxx
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Re: MRSA and Toxic Shock Syndrome
Reply #3 by Maria
Posted: August 5, 2007 at 13:14
Dear Lizz
Your family and little boy have been through so much, what a fighter your son must be. I have only spoken to people who have had scepticemia who have had MRSA, but not Toxic Shock Syndrome. The NHS Direct Website for Scotland (www.nhs24.com, click on the health encyclopedia on the left and then choose toxic shock syndrome from the A to Z listings) has an article about Toxic Shock that states younger people are at greater risk, as older people are more likely to have built up the antibodies needed to protect them from the toxins - it is so rare that most doctors will not see a case of Toxic Shock Syndrome during their medical career.

My best wishes to you and your family, I hope you will be able to find someone who may be able to offer you further help and that you find the best treatment for your little boy.

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Re: MRSA and Toxic Shock Syndrome
Reply #4 by Nancy R
Posted: August 5, 2007 at 13:48
I'm totally speechless. What this poor little angel has had to endure. I don't have the answer to your question, but can only hope and pray that cures can be found to help your little boy.
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Re: MRSA and Toxic Shock Syndrome
Reply #5 by moya
Posted: August 5, 2007 at 14:05
dear Lizz you can find lots of info on MRSA and other HCAI's at www.mrsaactionuk.net

Best wishes to you and your family
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Re: MRSA and Toxic Shock Syndrome
Reply #6 by Lizz
Posted: May 16, 2008 at 21:29
Hi, thanks to the lovely replys i had when i first posted on this board, thought i would give an update on Adam. Due to either the Shunt blockage Adam suffered,or the Toxic Shock, he has been left with stroke-type symptoms, and although initially he had only his right leg moving, he can now move all four limbs, though not as well as before, he used to side flex, to wriggle, on the floor on his back, but he can't do that anymore. He can't hold things in his hands anymore, not even a rattle, and he has lost his central vision, and now only has perhriphal (outer) vision, his hair has grown back really well, and we had to buy him a big physio mat, as he was so sensetive to touch when he first came home, he was really 'whingy' for weeks after, i don't know if this was due to muscle aches or anything, as he can't tell us. His consultant has said there is upto 5 years after brain injury in a child in which they can regain function, and although Adam is disabled, it means what small function he has is even more important. We have finally heard about our complaint!!! A docter from the hospitial came to see us at home today, a core investigation has been held by the hospitial about the MRSA outbreak as it shut down the PICU. The hospitial has admitted Adam did catch the MRSA in hospitial and that is was a totally different strain to the previous infections. They have also admitted that they do owe us a big apology, not just for the MRSA, but for a lot of issues that occured, regarding the care Adam recieved, which they admit was sub-standard, and because he was not diagonised with the shunt failure in the first place, until he went into the coma. They also admit the staff did not take any notice of me, when i repeatedly told them Adam condition was worsening, until he stopped breathing, and the Toxic Shock was diagonised. We now have to wait another 6weeks while they do more investigating. He asked us what we want the hospitial trust to do, and if we want compensation, to be honest, we haven't discussed that aspect, we are just scared about the next time Adam ends up in hospitial, on the same ward, with the same staff, who treated him so badly last time. Any advice for dealing with 'next time' will be appreciated.
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Re: MRSA and Toxic Shock Syndrome
Reply #7 by Maria
Posted: May 16, 2008 at 22:06
Dear Lizz
It is good to hear from you, and that your little boy is making a recovery. There are signs of encouragement for his future, although it will be a tough time for you all, but with you love and care I am sure he will make good progress. I think for the future it would be worth considering taking up the offer of compensation, you could then look at private healthcare if you were worried about future treatment in that particular hospital - I can understand your concerns, and I would like to think that the hospital concerned has learned from its mistakes, and other hospitals too, as we know that they look at this forum. Your family and your son will need ongoing support and any compensation claim should take this into consideration.

I would contact a good solicitor to talk this through. You would need to choose carefully, and AVMA would be able to help you with that choice. There are solicitors that will give you an initial consultation free of charge, and you would have everything to gain and nothing to lose if you choose the right one. I can make a personal recommendation of a very good solicitor who would be only to pleased to be able to help, contact Phil Barnes of Anthony Collins solicitors for an informal discussion, or the charity AVMA.

Phil's email is phil.barnes@anthonycollins.com or telephone 0800 783 9506.

AVMA's website can be found at http://www.avma.org.uk/

It is very sad that your family have had to suffer like this, and that the staff looking after your son didn't listen to you when he was so very poorly, a mum knows when something is drastically wrong, I doubt very much if it would happen to you again after what happened, and I hope that this hospital has learned from it's mistakes.

My very best wishes to you and your son x

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Re: MRSA and Toxic Shock Syndrome
Reply #8 by Lizz
Posted: May 18, 2008 at 16:08
Hi Maria, thank you so much for your advice and kind words, we are worried that if we did go for the compensation, that us and Adam would be treated nastily by staff on future admissions, the hospitial concerned is a very large teaching hospitial that serves many areas and even if we were to go private, i think we would still end up at the same hospitial under the same consultant and staff, as the consultant concerned is a specialist in his field. Adam will definately require future brain surgery, and as he also has the lung disease and other problems associated with his Cerebal Palsy, he will also be in hospitial again at various times for these issues. The hospitial has already put in action a 'weekly hand washing audit' of the PICU staff, but i'm not totally sure what that means, but my main concerns is the way staff on the Neuro ward totally ignored and disregarded our concerns as Adam deterioated, and the fact it took FIVE WEEKS!! for them to diagonise Adams Shunt failure, which led to the coma, that is why the hospitial is mainly offering the compensation, not just because of the MRSA and Toxic Shock, which was also not quickly diagonised. I am going to have a good think about how to proceed next, and i will keep the soliceters details handy. Many thanks again, Lizz and Adam. :D
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Re: MRSA and Toxic Shock Syndrome
Reply #9 by Rebecca Childs
Posted: November 24, 2016 at 11:36
MRSA is an extremely contagious disease, it can be a very dangerous infection and is a growing concern around the world. On the other hand, TSS i.e Toxic shock syndrome which is a sudden, potentially fatal condition. It's caused by the release of poisonous substances from an overgrowth of bacteria called Staphylococcus. TSS is mostly a disease of menstruating women who use tampons as menstrual product. But, there are few menstrual products which one can refer at http://www.cupissima.com, are helpful to avoid the risk of TSS.


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