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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:
expatinscotland · 11/10/2005 22:44

Aw, Amy! BIG ((HUGS)), hon.

lisalisa · 11/10/2005 22:50

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lisalisa · 11/10/2005 22:53

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Redtartanlass · 11/10/2005 23:06

Amyjade - thanks for sharing yor beautiful website and wonderful pictures of your wee angel Freya. And of course for raising awareness of Pneumococcal meningitis.

mears · 11/10/2005 23:20

I am very sorry to read of your loss Amyjade. Reading of the other stories makes me realsie just how lucky we were. My DS2 had pneumococcal meningitis at 6 months. He had a 2 week period of spiking temperature, seen by doctor and given 2 courses of antibiotics. When they finished the temperature returned. Then one day he wouldn't feed and was sleepy. He had a temp but his hands and feet were cold. Was seen by the doctor who though he might have a chest infection and gave us the choice of staying at home or going into hospital. Thankfully we went in. Just after admission his fontanelle started to bulge - a sign of meningitis. He also cried every time he was sat upright. A lumbar puncture confirmed pneumococcal meningitis and he was started on antibiotics. We were told the next 48 hours were crucial. Thankfully he got better and is now a healthy 16 year old. We are so lucky...

puff · 11/10/2005 23:36

AmyJ, I've just been looking at the RAPPID website. It's very sobering reading.

How can we get our children vaccinated in this country, if the GP basically says no? Do private clinics offer it?

I just can't begin to imagine what you have been/are going through. I really had no idea about this form of meningitis, thank you for trying to raise awareness among other parents.

Pixiefish · 11/10/2005 23:39

So sorry for your loss Amy. Beautiful website for a gorgeous little girl xxxxx

strugstu · 12/10/2005 00:04

how heart breaking. what a wonderful site you have created - she's beautiful.

I'm so sorry for your loss.

jabberwocky · 12/10/2005 02:05

Amyjade, I am awash in tears for you right now. Just went to your website. What a beautiful little girl. My ds was born in August 2003. We had worried about giving so many vaccines to ds and waited on some, but my brother, who is a pysician convinced us to go ahead with the Hib and Prevnar. I had no idea that Prevnar was not readily available in the UK.

I am so, so sorry for the loss of your lovely daughter.

homemama · 12/10/2005 10:29

Amy, so sorry for your loss.
We paid to have the prevenar vacc for DS. The dr who gave it said it was one of the safest vaccines he has ever used. He also said that the only reason its not given in Britain is the cost. (we payed £150)
He also said that it gave positive side effects such as preventing most ear infections as they stem from the same bug.
I'd never heard about it until I read about it in a parenting mag but the peace of mind it's given has been good.
Again, so sorry for your loss.

Springchicken · 12/10/2005 12:07

Thought I would post these links
Symptoms for Babies
Symptoms for toddlers

Heartmum2Jamie · 12/10/2005 13:50

Puff,

Private clinics do offer it, or if your child is under 2 and in an at risk category, they should be offered the jab. There is also a jab for children over 2 called Pneumovax II.

This is what it says in the leaflet that I have had from our private Dr (had mmr seperately)

Prevenar: This vaccine is licensed for children under the age of 2 where Pneumovax does not work very well. Prevenar protects from only 7 of the 92 strains, is painful to administer because the solution is acidic, it has troublesome initial side-effects and needs 3 or 4 doses depending on the age of the child. It is currently only available on the NHS for those children who are "at risk". This included children for instance with Asthma or other chest diseases, heart disease, kidney disease, organ transplants, immune dificiencies etc.

Pneumovax II: This vaccine is currently available for ALL people over the age of 65. It is also available to children who fall into the above "at risk" categories. It is available for those children over 2 years of age. This is a well established vaccine which requires only one dose initially and is very well tolerated. It protects against 23 (of the 92) strains of Pneumococcus which are most likely to cause infection.

It is clear that the vaccines against Pneumonococcal infections will be shortly extended to include the whole of the childhood populatuion. However, the schedule has yet to be decided; it is not clear whether all children under the age of 2 will be vaccinated with Prevenar followed by a dose of Pneumovax or whether the schedule for Pneumococcal vaccine will start over the age of 2 simply with Pneumovax.

I know that they make out the Prevenar vaccine to be something horrible which shouldn't be given, but I am sure that most of us would rather put up with our children screaming from the jab and a temperature/runny nose for a few days rather than them fighing for their lives from Pnemonococcal Menengitis.

I hope that some of you find this useful.

jabberwocky · 12/10/2005 13:57

I was very wary of giving ds so many of the vaccines currently on the US schedule. We went more slowly and cautiously than our doctor would have liked. We did wait until ds was 15 months old to give him Prevnar, although now I question the wisdom of that. I justified waiting because he does not go to daycare and thus is at significantly lower risk of exposure.

Anyway, he did not have any reaction whatsoever to the jab. We just gave him the single measles vax and he was far more uncomfortable after it than the Prevnar.

Passionflower · 12/10/2005 14:04

I have been so shocked and saddened by this thread. My thoughts are with all who have suffered.

I will definitely be talking to our doctor about getting my DD's the Pneumovax II when DD3 turns 2 (currently 21mth).

homemama · 12/10/2005 14:09

Just to say that DS had no side effects whatsoever after his prevenar vaccine.

jabberwocky · 12/10/2005 14:17

Passionflower, you can give prevnar as early as 2 or 3 months, I believe. So, your dd3 would be fine to do it now if you wanted.

TinyGang · 12/10/2005 14:31

I am so sorry - she was gorgeous. Thank you for your info and for telling us about Freya.

expatinscotland · 12/10/2005 17:12

DD also had no side effects from the vaccine, which is thiomersal-free.

£120 is what we paid for the course in 2003.

izzybiz · 12/10/2005 17:17

just want to add to others whos kids have had prevenar jab, that mine had no side effects either.

puff · 12/10/2005 17:34

Thanks for the info everyone - much appreciated.

Amyjade · 12/10/2005 18:26

Freya was a fit and healthy 19 month old when she contracted pneumococcal meningitis, she didn't go to nursery and wasn't in any of the 'at risk' groups so i really hope the government decide to introduce it for the under 2's.

3 weeks prior to the meningitis Freya became unsteady on her feet and kept falling over, this was put down to a middle ear infection ( which in 80% of cases is caused by the pneumococcas bacteria). We think this was the cause of the meningitis.
Prevenar protects against ear infections and Pneumonia aswell as meningitis these are serious diseases so if there is a vaccine out there which is proven to be safe why not use it?

Just to let you know Libby had her 3rd dose of Prevenar yesterday and has had no side affects, she didn't even cry !!
It's me that cry's knowing that if Freya had been vaccinated she would still be here now!!

OP posts:
Heartmum2Jamie · 12/10/2005 18:36

((((Hugs)))) AmyJade. I rang my local hopspital today to try and arrange ds's prevenar. I have the script for it, but the chemists are all telling me that they can't get it and thay they would order it but it can take upto 2 weeks. Why wait when I can get him in this week right?

I also asked at my private dr about the Pneumovax II jab for dh, ds1 & I and he said that they are £75 each. I would think that they would also offer them to the rest of the family that lived with an "at risk" child??

Springchicken · 12/10/2005 19:13

Many of these symptoms are concerning me now. I can put alot of these to DD. She constantly has cold hands and feet (I have taken her to the hospital where i was told she would grow out of it), she has started losing her balance and toppling over when there is no reason for her to, she has also been grumbly, not knowing if she wants to be picked up or put down.
Panicking a bit now

HappyMumof2 · 12/10/2005 19:17

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HappyMumof2 · 12/10/2005 19:19

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