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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:
morocco · 12/10/2005 22:04

I'm so sorry for your loss amyjade.

just to add my story in case it helps anyone deciding about vaccines,not that you can base everything on just one story, but still
I was quite anti vaccines and postponed a few til a bit later and never bothered with the pneumovax (we were abroad at the time and it was optional there)
ds1 then developed a kidney problem and was hospitalised with suspected pneumococcal septicaemia - luckily it turned out not to be that in the end. But now he is on the 'higher risk' and should get the pneumovax except he can't have it because of the meds he's on. He got pneumonia a while ago but it wasn't too bad. I really really regret not getting him vaccinated when I could - it would have saved me a lot of stress and him a possible life threatening illness. I know his kidney problem is rare but I never thought my child would have anything like that - shows how little we know about what the future holds

Amyjade · 12/10/2005 22:05

Prima baby magazine are running an awareness campaign called ' Hidden meningitis'.

I will never get over seeing my daughter deteriorate beyond recognition in the PICU but the screaming is one thing that haunts me, you just feel so helpless.

It still amazes me how a bacteria so small can do this much damage to a healthy child.

OP posts:
Heartmum2Jamie · 12/10/2005 22:12

"I never thought my child would have anything like that - shows how little we know about what the future holds" I couldn't have said it better Morocco. I would have liked to been able to make the choice, but that choice has been taken out of my hands now. ((hugs))

Passionflower: I don't think that I would wait to get your youngest vaccinated. Afterall, it another 3 months until she is 2.

Isabelle2 · 12/10/2005 22:27

Amyjade,

Thank you so much for your brave and thoughtful posts, I have been sat at the PC in floods of tears looking at Freya's website and reading your posts. I am going to do all I can to look into getting my my boys aged 2 and 3.5 the Pneumovax II.

Freya was absolutely beautiful, my heart aches to think of her. I'm so sorry, you must be so so proud to be her mummy. Huge hugs XXXXX

Passionflower · 13/10/2005 22:08

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Amyjade · 13/10/2005 22:25

Good on ya passionflower!!

As mothers we need to push for this vaccine to be introduced asap.
Lets not let another beautiful child like my Freya lose their life or be left brain damaged by this disease.

I was even thinking of contacting my local MP to see if he knows when the vaccine is to be introduced?

OP posts:
Monkeysmom · 14/10/2005 15:12

Amyjade,

Thank you so much for your post, for raising the awareness. I am at work and had to hide my tears looking at your little girl website. She is beautiful and it is so unfair. I am so sorry for your loss .[Hugs]
I am determined now to have my DS, 19 mo, vaccinated against this horrible disease .
I have called the private clinic where I have vaccinated him against mumps, measles and rubella ( singles), but unfortunately, they do not offer Prevenar.
How can I go private when the only private clinic I know, do not offer it ?

izzybiz · 15/10/2005 14:10

monkeysmum,
i had my dd vaccinated at 15months, she is Freyas cousin by the way, i just went to my gp and asked for it, she had to give me a private perscription for it, and the local chemist ordered it. i then took it back to my gp who gave it to dd. i had to pay £52 for first dose, gp managed to get second dose on nhs. good luck, hopefully your gp will be as understanding as mine.

donnie · 15/10/2005 14:29

this thread has been extremely informative and I had never heard of prevnar until I read it. Thanks Amyjade for sharing your difficult experiences like this - the website is beautiful btw.
I asked the surgery nurse about this vaccine on Thursday when I took dd2 in for her dip/tet/hib jab and she told me it is a pneumonia jab for under 2s and very rarely prescribed. She was keen to know where I had heard about it ( I just said the internet) and said it wasn't so much for meningitis as for ear infections or pneumonia - interesting.....I might ask the HV as well.

Amyjade · 15/10/2005 18:56

Donnie,

Have a look on www.RAPIDD.org, that will tell you all about pneumococcal infection.

OP posts:
Amyjade · 15/10/2005 18:56

Sorry ment WWW.RAPPID.ORG

OP posts:
hunkerpumpkin · 15/10/2005 19:29

AnyJade, I'm so very sorry. My DS is nearly 19mo and I cannot imagine the pain you must feel from the loss of Freya.

If anyone wants to contact their MP about this subject (I will be writing to mine in a minute), please use this link - it's very easy

SofiaAmes · 16/10/2005 07:40

Prevnar is available privately in the uk and has been for some years before it became available for high risk groups on the nhs. I had my two done, but because of timing had to do some of the doses in the uk (rest done in the usa). Before it was available on the nhs, I paid a lot of money to a private doctor to have it done and then once it became available on the nhs, my gp's agreed to administer the jab as long as I paid for the prescription (around £30 I think)....a small price for the safety of my children. Neither of mine had any adverse side effects. However, my ds did have a positive side effect which was that he stopped getting ear infections after his second jab. He was getting ear infections with high (105) fevers with every cold, so this was a significant difference for us. Reduction in incidence of ear infections is a known positive side effect of the vaccination.
Amyjade, so very sorry to hear about the loss of your daughter and thank you for posting and sharing your story with us.

Amyjade · 19/10/2005 22:21

My niece is 3 years old. Does anyone know what vaccine she should be having pneumovax or prevenar?
Sister in law is getting conflicting information from doctor and health visitor.

If no idea who can we contact to give us the right information?

Thanks x

OP posts:
expatinscotland · 19/10/2005 22:27

Amy
Try this. It's an American site with the schedule Americans use as guidlines for childhood immunizations:

centers for disease control

expatinscotland · 19/10/2005 22:31

I think it's Pneumovax she needs but check the site.

It always helped in my case to say (even tho it's not true) that we planned on moving back to the US and so DD needed to follow the American vaccine schedule, as many schools - both state funded and fee-paying - require a child to be vaccinated before entry.

Heartmum2Jamie · 19/10/2005 22:36

Amyjade, your neice would just have the Pneumovax jab as she's over 2.

I have Jamie's 1st prevenar booked for next wednesday. It can't come soon enough. poor little mite has had a continuous cold for 3 weeks and I am worried about it turning to pneumonia or him getting an ear infection.

Lally123 · 21/10/2005 13:52

PREVENAR OR PNEUMOVAX JAB
AMYJADE IS MY SISTER-IN-LAW AND IT IS MY 3 YEAR OLD THAT IS TO HAVE THE JAB.
I HAVE JUST TO SPOKEN TO THE MENINGITIS RESEARCH FOUNDATION AND THEIR GUIDELINES ARE THAT SHE WILL NEED TO HAVE 2 SHOTS OF PREVENAR 2 MONTHS APART THEN 2 MONTHS LATER SHE WILL HAVE PNEUMOVAX. SHE APPARENTLY NEEDS THE PREVENAR TO HELP BUILD UP ANTIBODIES SO AS SHE WONT NEED TO HAVE A ANOTHER PNEUMOVAX JAB 5 YEARS LATER.

Monkeysmom · 09/11/2005 11:16

I have finally booked DS for his first Prevenar jab. I have to say it wasn?t easy at all. I had first to convince my GP to get the prescription. Originally, I am not from UK and used this by saying that where I come from, this vaccine is routinely offered ( not sure if it is true). I take DS to see my parents twice a year and said that he needs to be protected.
Then I had to order it from the chemist which took ages to arrive.
Now I have the appointment with the nurse in 2 weeks time.
Amyjade, thank you for your post, it is where I first heard about this vaccine and as a result, DS will be protected against this awful illness.

inglis · 10/11/2005 18:02

amyjade - your post has reduced me to tears. I am so sorry for your loss.

I have been looking to get this jab for my son. Anyone know of any place where i can get it privately in London. My Gp is being very sniffy about the need for it - despite the fact that my son suffers from ear infections.

expatinscotland · 10/11/2005 18:16

The Prevenar jab IS routinely offered in the US. I am American, my husband is Scots, but I use this excuse all the time to justify getting jabs for her, even when I am paying! It makes me SO angry. But in the US, many schools and unis require these jabs for entry, so I have to go around saying we're moving back.

Amyjade · 10/11/2005 18:32

I am going to a parents forum day next saturday in Birmingham, it's a chance for every parent affected by pneumococcal disease to meet each other.
There will be health professionals attending to discuss when the prevenar vaccine is going to be introduced to the childhood immunisation programme so i will let you all know when the planned date will be.

OP posts:
expatinscotland · 10/11/2005 18:53

Would you mind keeping us posted, Amyjade?

And again, thank you SO much for sharing your story.

foundintranslation · 10/11/2005 20:11

thankyou amyjade for sharing your heartbreaking story.
As a result I am going to get ds (who is nearly 6mo) the Prevanar. I will ring my paediatrician tomorrow and see if it can be done next week when he's due for his 3rd 6in1. (Am in Germany, where the guidelines on pneumo vaccine seem to be identical to those in the UK).

Elibean · 10/11/2005 20:46

Thank you again, Amyjade...I went to the site you mentioned on the other thread and read (with tears) Freya's story. She's beautiful, its almost beyond belief to think she's not with you anymore. You are one brave Mummy, coming here to share what you know. This Prevenar option...its all new info to me, and I'm going to talk to DH tonight about trying to get private vaccines for our 22 month old. For what its worth, you've made a big difference to awareness today, mine for sure. xxxxC

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