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Pneumococcal Meningitis

137 replies

Amyjade · 11/10/2005 10:15

Hi my name is Amy and i wanted to share with all you mums the tragic story of the loss of my beautiful, 19 month old daughter Freya.

I feel i need to get across to as many people as possible information on this 'HIDDEN' Meningitis which took away my baby girl.
Pneumococcal meningitis is never really talked about and parents of often ignorant to this terrible form of meningitis.
Pneumococcal is a severe form of bacterial meningitis which is more common in the under 2's.
Children don't usually get the so called 'RASH' with this strain which is why it is so hard to diagnose.

Freya became ill with a high temperature and vomiting on 5th April 2005 and was seen by my GP who said she needed parecetemol but Freya became very drowsy so we took her to hospital where she began to have seizures. We were transferred to our local PICU where Freya suffered kidney failure and irreversible brain damage, she died in her daddy?s arms 11 days later.

As all this was happening i was 28 weeks pregnant with my second daughter Libby who was born only 8 weeks after her big sister died.
Our lives have been torn apart after the loss of our precious little girl but the real kick in the teeth was that Freya's life could have been saved as there is a vaccine called Prevenar that protects children from the pneumococcal disease.

Prevenar has been used in the USA for over 5 years but still our government has yet to introduce it.

I hope this will make all parents more aware that this disease exists and that there is a vaccine to protect your children.
50 children a year die from this infection, in my eyes 50 is too many. something needs to be done before more lives are shattered.

Libby is 4 months old now and is about to have her third prevenar tomorrow.

OP posts:
Elibean · 10/11/2005 21:24

Hunkerpumpkin: GREAT link. Thank you. Have used it re vaccines, and also re herceptin. It really is easy.

Heartmum2Jamie · 11/11/2005 09:32

Amyjade: The conference sounds good. Would you mind keeping us posted on any findings?

Jamie finally had his prevenar shot on the 26th Oct and had no side effects. We are due back for the 2nd dose on 28th Dec.

sparklymieow · 18/11/2005 14:21

Just found this as Misdee is just reading your story in Take A break and told me that you are a MN. I went to your site but I need a password to get in.
I am so sadden to hear of your daughters death and the fact it could have been prevented makes me so sad

Amyjade · 18/11/2005 20:42

My little girls story is in this weeks addition of Take a Break.

OP posts:
misdee · 18/11/2005 21:02

made me all tearful reading about your little girl in TAB.

foundintranslation · 19/11/2005 14:53

For those who are living in Germany and have public health insurance: Prevenar is not offered as routine, but your insurance will pay for it - you just have to ask for it specifically at the paediatrician's.

Amyjade · 22/11/2005 14:49

Just wanted to update everyone on what was discussed at saturdays parents forum.

There is still no set date for the introduction of the prevenar vaccine but it looks like it will be next year some time. There has been a delay in introducing this vaccine as in october 2004 the joint commitee for vaccination and immumisations (JCVI) agreed it should be included in the routine childhood immunisation programme but the delay is mainly because of the complex issue of fitting it in with the other vaccines and also because of all the hype about the MMR.
Obviously this was upsetting for us to hear as Freya died in April 2005 7 months after it had been agreed to introduce it.

So the main subject of discussion was how we can push the government to pull their finger out and get this lifesaving vaccine introduced as 50 children a year die from this this disease.
The RAPPID programme(raising awareness of peadiatric pneumococcal disease) has written a letter to Tony Blair on our behalf highlighting the affects of the disease on us and other families. Lets just hope he will do something about it.
We are also planning a balloon release next spring outside parlament releasing a balloon for every child who has died since october 2004 and by that time sadly there will be about 20 more.

On a personal level it was good for us to be able to meet other families who have lost children and how they have coped. A lovely dad did a talk on how his 2 year old son caught the disease twice, the first time he recovered with no ill affects but the second time he was sent home by the hospital and died 10 hours later. He was born without a spleen unknown to them untill he had died but ment he was in the ' at risk ' group.
Also there was a boy in a wheelchair extremely brain damaged by meningitis, it was so very sad to see how families are torn apart by whatever the outcome of this disease.

OP posts:
Monkeysmom · 23/11/2005 13:01

Amyjade,
Thank you for the update. My DS, 19 mo, just had his first Prevenar vaccine on Monday with no ill effects. He was laughing and playing 5 minutes later. This is as a result of this thread and I cannot thank you enough for making me aware of the existence of this vaccine. I really do hope the government will introduce it soon, as part of the routine vaccination programme.

Elibean · 23/11/2005 19:35

Thanks, Amyjade, for updating us. I emailed my MP after reading this thread, and had a reply yesterday - she has written two questions in response to my email, but it sounds as though your info answers her questions! Still, its good to know she took one measly email seriously - makes me a teeny bit hopeful that lots of us emailing MPs might hurry things up a bit.

I've tried to find out where to get a pneumovax for DD (who is 2 in three weeks' time) privately, but so far no joy - anyone have any ideas?

amyjade · 17/01/2006 11:39

Just to let you know Freya's story is in today's Daily Mail.

I hope this piece can bring more awareness of this devestating disease and the vaccine that could have saved my daughters life.

OP posts:
mummypumpkin · 17/01/2006 22:30

This reply has been deleted

Message withdrawn at poster's request.

Aloha · 17/01/2006 22:40

I'm so sorry. Freya was so beautiful. I think what you are doing to raise awareness is wonderful and a great tribute to Freya.

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