Meningitis-- when mums right and docs are wrong( long story)

[cantseemyfeet]

I have just endured 5 days of hell and I am going to explain why in the hope it might urge other parents to use their gut feeling rather than rely on doctors advice.

On Thursday morning my 3 yr old son became unwell with a high temperature, I assumed it was just a bug going round and gave him Calpol and let him sleep.
When his temp hit 39 I took him to my GP who checked him over and told me he seemed ok but had swollen glands, he adviced me to keep him cool and gave me Brufen to bring his temp down.
By Thursday night he had developed a blotchy looking rash and his temp wasnt going down so I rang the emergency out of hours surgery, explained that he had seen a doctor already and that he was still very poorly with a rash now.I asked the doctor if he would come to my home to see him as I was getting worried.
The doctor told me I would have to bring my son to him if I wanted him to be seen and despite the fact I argued that I had a 5 month old son asleep and no way to get there as I was on my own (the surgery is 5 miles away)I was then forced to haul friends and family out of bed to look after my other children and then drag my son out into the cold to see the doctor.

Once there the doctor briefly checked him over and told me it was probably chickenpox. I said I was worried it was Meningitis and was told that it certainly WAS NOT Meningitis. The rash he had was multiplying by the minute which I questioned, as chickenpox tends to have spots that appear over a couple of days but I was assuered it was just a viral rash and was told to go home and let him rest.

The next morning I expected to find him covered in blisters, I even got some calamine lotion for him but, the spots were the same, not dark but blotchy and his temp was still high. Deep down I knew something was wrong but you put your trust in the doctors dont you and I didnt think they could be wrong.

I really began to panic when he started vomiting and although he was sleeping alot I found myself constantly checking him. I desperatly wanted to call the doctor again but when 2 of them have told you he is ok you dont want to become hysterical and tell them they are wrong. Then I saw it....that one spot. The one you dread ever finding but KNOW EXACTLY what it is. It was dark red and as soon as I saw it I rang the medical emergency number. It took 45 minutes for a doctor to arrive but the minute he saw him he told me he was going to inject him with peniccilin and call an ambulance.

The next half an hour was the scariest of my life. The ambulance was there within minutes but my son was going downhill fast, he was so sleepy, he was grey and spent most of the ambulance journey vomiting or being kept awake by the paramedics, who I have to say were fantastic.
By the time he got to hospital his hands and feet were so cold they couldnt find a vein to put a drip in but thankfully once treatment started he began to make a recovery. Hewas very poorly for the first couple of days but thanks to the wonderful nurses and doctors at the hospital he was allowed home with me today. He still has to have IV antibiotics every day but it was the best feeling in the world bringing him home.
Sorry this story is so long but I appeal to all parents, if your child is sick and you dont think your doctor is right PLEASE PLEASE take them to A&E. The consultant couldnt believe that I was told it was chickenpox as the first rash he got was a sign of Meningitis, along with the cold feet and hands. She told me I should of just brought him to A&E on Thursday night but praised me for going with my insticts and constantly checking him because if I had let him "sleep it off" I would now be arranging my sons funeral.
I can forgive my GP for not realising because he had no real symptoms at start but the out of hours surgery was a disgrace and I am going to kick up such a fuss about it.
I am so grateful that my son is alive and making a recovery but it is only because I know him and I knew something wasnt right. If you feel the same when your child is very unwell then I urge you to do the same!

god how awful forty

Yes. I only met her about 3 years after she had lost her daughter, but she still couldn't get the awful pictures out of her head. She is an artist and it made her feel better to draw what she was seeing. Even though it was only a pencil drawing it made me feel sick to see it. Hideous bloated lips. At one time she was told that the only way to try to save her daughter might be to amputate all her extremities - arms, legs, lips, ears.

It's worth sparing a thought for those who survive this. Often very young children suddenly facing amputations.

can'tseemyfeeet that was indeed a very chilling post. I am glad your ds is OK and I wish him a speedy and full recovery.
It sounds like you saw a locum in an after hours arrangement rather then one provided by the GP/linked to the surgery/as part of a coop. As such it will be your local PCT who is responsible so your complaint would perhaps be best directed at them confusing chicken pox and meningitis is pretty serious as is not taking your ds's temp, people have been GMC'd for similar. If you google your PCT it should come up with a complaints dept. My only other suggestion is you be very specific as to what your complaint is and focus on what is important. You can also request they let you know what they have done about it and if you don't like it write back again. (I hope you don't mind me saying this I'm not trying to tell you how to compain...) When I have made complaints I have had more results by asking difficult questions (Do you think it acceptable for an emergency GP not to know the difference between chicken pox and meningitis? Will you be using this GP again? What arrangements have you made for him/her to receive appropriate training in this matter? etc etc) I would echo others saying if you think meningitis is pssible straight to A&E.
I do wish you and your family all the best.

Fortyplus yr story makes me even more thankfull that my son pulled through. I am terrified that it could come back in some secondry form and cause problems with his joints but he is fairly active right now so hoping danger period is over.
That poor girls mother must of gone through hell and I REALLY feel for her, this illness has taken so many lives and it still isnt taken seriously by medics, I honestly would not want to see her paintings as I saw what this illness did to my son and I really wouldnt want to relive it. I understand her need to draw if she is an artist but god knows I would rather just get the images out of my mind than have them there as a constant reminder.
On a good note my son has had drip taken out today, he is just sooo back to his old mischeivious self it is unbelievable he was so ill this time last week, cant believe this week has flown by so quickly but glad things have improved. I count myelf as a very lucky mum and I will never take my childrens health for granted again.
1 dilemma thanks so much for the advice, I dont mind you giving it at all in fact im grateful for any advice on complaints to NHS etc. because I have never had cause to complain untill now, and im not complaining because one bad experience has forced me to complain, I just DO NOT want another parent to go through this, If OOH realise that a rash that looks harmless could lead to Meningitis then maybe they will think twice before sending the next parent home and they will not have to go through the same drama we did.

cantseemyfeet thanks for the reply.i live nr torrevieja on the costa blanca.whereabouts do your parents live? no, thank god the health service is normally fantastic!

it really is second to none but unfortuantely some staff dont seem to understand the concept of bedside manner here, doctors and nurses can be very abrupt and cold but that is just the spanish way although there are many i have come across also that are the opposite.The doctor who looked after my lo while we were in the hosp was amazing,so nice and couldnt do enough to help, even printed fact sheets out on epilepsy for us in english to take home which i thought was lovely.

I think alot of them come across as being moody and abrupt because thats just how the Spanish are in my view even though they probably dont mean to be!! what are you going to do about your treatment??? i was told i should've complained about that woman doctor but not really speaking Spanish it would have been alot of hassle plus i was worried that if we have to go down there again it might prejudice how my lo gets treated even though it shouldnt if you get my jist

Hi Bourbon,

Im writing to local nhs trust to complain about the fact it took 45 minutes to get a doc here but im still trying to track down who is responsible for the OOH surgery, but I will not let it drop till I get some answers.
Is your little girl ok now? Has she suffered any more fits since then? Glad to hear that Spain has good health care, its most important thing to know especially when you have children in another country.

My mam has an apartment in Almoradi, which isnt too far from where you are is it? I havent actually been round Torrevieja but went to Inter marche last time I was there ( was like a kid in a candy shop). She dosent actually live there yet, she wants to move out there either end of this year or next but we are all going out in June, I love it over there and envy you living there.

If you could see my son now you wouldnt think there was a thing wrong with him, he is back to tearing round the house like Taz and making as much mess as possible.
I really want to get something for all the Nurses who looked after him because they were fantastic but I dont want to just arrive with box of chocs and flowers arnt allowed on wards now, Anyone got any ideas??

Home baked something for nurses.

I don't know if you all realize that since the new gp contract a few years ago, it is no longer practical (ie cost effective) for them to cover their out of hours work. It is generally handled by the trust (I think) who can pick whomever they want. It used to be that the gp's rotated who did the weekends and nights amongst themselves within the practice. However, something about the new contract prevented that and made it very expensive to do it that way. Our surgery used to be open on saturday mornings (really great for working mothers with babies), but stopped that with the new contract. Once not long after new contract changeover I called nhs direct after hours when ds had high high fever (105) and I knew it was an ear infection. They sent me to out of hours doctor covering our surgery who saw him at local hospital instead of coming to the house (some new concept they were trying out). The guy could barely speak english and didn't have a clue of how to check for an ear infection in a child and if I remember correctly just prescribed the antibiotics on my word of what it was. Or maybe didn't prescribe the antibiotics. Whatever it was that happened was so pathetic that I never called NHS Direct again and always took my children to paediatric a&e at St. Mary's where they would be seen by people who specialized in children (even the nurses were specialists in children). In fact, once I took ds (aged 2 at the time) there with high fever and a rash and they wisked him in to be seen within minutes and had his blood and an xray done with 1/2 hour. (turned out to be burst blood vessels from coughing from pneumonia, not meningitis).

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cantseemyfeet I'm so pleased to hear that your son is so much better.

I think the person I know has been unbelievably disturbed by what happened to her and her daughter. Of course I only met her a few years later so it's hard to judge, but she certainly seemed to deal with the whole thing in a rather different way to what would seem 'normal' to me. Though of course how could she be 'normal' after going through that?

No... as an example... she had the mega funeral with glass sided horse-drawn hearse. Horses with plumes of black feathers on their heads - the full works. The child's name spelled out in a wreath.

And the last time I saw her she still had photos of all these things in pride of place on her sideboard.

That is strange, isn't it?

Hi guys,

Really pleased to say Son is of anti biotics all together now and is back to driving me insane by trashing my house and making as much noise as possible.Wouldnt have it any other way! He is still very tired which is expected but fingers crossed all is well now.

SA, Thanx for the tip on the nurses, not the best cook in the world though and dont think they would appreciate a flat cake or rock hard cookies!!!
What you said about NHS direct though is worrying, everyone has told me if I had called NHS direct on the thursday night they would have sent an ambulance then, they recommended I call the helpline before out of hours if im really worried. After reading your story though dont think I will bother with either. Trouble is our nearest Hospital is 20 miles away (thanks to cuts) and it is a hell of a drive there through winding roads, its ridiculous and im dreading every needing emergency help again.

Lisalisa,
The discharge note said the secondry was called Meningism or something!!! The doctor told me to watch out for him complaining about his joints because they could become infected, which put the fear of god into me. They seemed quite happy with joints when they let him come home but still didnt know how long to look out for it??
As for your sons concentration/learning, that sounds exactly like my neice. She had Meningitis when she was 2 and was VERY lucky to pull through, like your son it was diagnosed very late and she had problems keeping up at school, her reading, writing and concentration were all way behind the other children and she needed extra help. It also affected her hearing and the enamel on her teeth. She is now 12 and bright as a button so dont worry too much. I wont know if there will be any lasting effects on DS because he is only 3 but the Docs seem to think that because they caught it early on it shouldnt cause to many probs. Ill cross that bridge when I come to it, just glad he is here and ok.

FP I dont want to even begin to imagine what your friend went through, I think the pain of losing a child must be the worst kind of grief to have to deal with and it does sound like she hasnt come to terms with it. A funeral like that does sound elaborate to you and me but maybe it was her way of showing people just what her daughter meant to her.I can totally understand her having pictures of her daughter in the house but to have photos of the funeral after 12 years does sound strange. Everyone deals with grief in different ways but this sounds like she is simply refusing to let go. Has she had any kind of counciling?? Does she have a partner who feels the same? It sounds awful but I would feel really uncomfortable going to a house and seeing pictures of a childs funeral all over. My heart goes out to the poor woman but it really does sound like she needs some help.

Thanx for all your kind words, its great to know that there are mums out there who are rooting for you when your having a hard time.

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OMG what an awful experience for you all. I'm so happy your ds is on the road to recovery.
It really is a lottery when it comes to GP's isn't it?
When my DD was poorly with a throat infection and rash last year the GP I saw in the morning rang in the afternoon and asked how she was. He then rang at 6.30 that evening and asked if he could call in on his way home to check her over. He wanted to check that the rash had not changed and that her temp hadn't increased. He then told me if I was at all concerned then to take her straight to the hospital walk-in.
I must say I was very impressed and was put at ease by him (another doctor at the same practice often makes me feel like an over anxious parent)
It's such a shame you both didn't receive treatment like this.

Well I wouldn't describe her as a friend - jus someone I was 'friendly' with when our boys went to the same school.

It's a big story with lots of issues, frankly, so you're right that she should have counselling, but it would barely scratch the surface I think.

I mean - if I told you that her dh at the time was on heroin (allegedly!) and her best friend who comforted her in the days after the dd's death turned out to have been having an affair with her dh and the pair of them ran off together 6 weeks later...

JM You have a doctor in a million there! I wish all GPs were like that. My GP is absolutely great, he is fantastic with the children it is just the out of hours I have a real gripe about and the fact the receptionist at the surgery DIDNT take my call seriously enough to warrant my call as an emergency which is why it took 45 bloody minutes to get a doctor to me. I have to take baby to surgery on Thursday so am going to ask where the OOH practice is run because I am drawing a blank through the net.
Forty; Dear God the poor woman was really at the front of the queue when bad luck was dished out wasnt she? Glad I dont have friends like her! Mind you it sounds like she really didnt want either of them in her life if they thought that little of her.
I hope she gets some help, feel very sorry she is still in the same state after all these years.

jezzemx, I don't suppose you live in Oxford do you?

just wondered. the doctors at the practice i used to work at varied enormously in many ways, but one thing they seemed to have in common was immense 'twitchiness' about meningitis - in a good way - they often rang up parents of babies they had seen earlier in the day to see how things were going. they had very different 'bedside manners' so didn't always come across well when they meant to be reassuring.

anyway, this is not too relevant. Hope the OOH doctor is currently rethinking his approach (to put it mildly).

Ha, I have finally found out where the out of hours docs come from and where to lodge complaint. I feel a bit daft complaining about it now my son is ok but if I dont complain and it happens again I will feel really bad for not speaking up.

Choosyfloosy, isnt it a pity all docs arnt twitchy when it comes to Meningitis. You would think after all the mistakes that have been made in the past they would be extra cautious with any child who has mild symptoms that could become severe.I have lost count of the people that have told me they know someone who has had Meningitis and it wasnt spotted untill late on. To be fair it is a difficult illness to spot in the early stages and they must see children with high temp every day, but if calpol/brufen isnt bringing temp down and they have rash/ cold feet and hands SURELY it would make sense to get them admitted rather than send them home and hope it is a virus!!

Im not a doctor so I dont know what is classed as definate signs but I truly hope they come up with some form of early detection that will save lives.

I (shamefully) havent had children christened yet but have arranged to get them Christened next month and have asked for people to donate to Meningitis fund instead of presents/money. I would never had thought of this if my son hadnt had it but then again, if it wasnt for the research I would have one less son to Christen.

CSMF-im shocked but sadly not surprised by your post..sadly there are documented failings in the gp out of hours service..ive had bad experiences with them myself.

however, 30 years ago, i went to a party for a friend and felt terribly ill while there, mum was contacted to pick me up and once home i rapidly went down hill, my eyes hurt and my head pounded..mum was concerned enough to phone the doctor..lucky for me he was a doctor who had recently completed a paediactric rotation and immediately recognised the symptoms of meningitis..he asked me to sit forward in ned and when i screamed with pain in my neck, that was the clincher..i was lucky..after 2 weeks in an isolation hospital, i recovered and was left with slight deafness.
CSMF..im so glad that your LO is recovering well and its definitely an important reminder to trust our instincts.

SCOAD
Soo glad to hear that you made a full recovery, must of been hellish scary for you.

My son was only in Isolation for 48 hours so things must have changed a bit in last 30 years.
Yes I am very glad I trusted instincts and kept bothering him by lifting his vest and checking spots (however he was far from impressed)
I guess its luck of the draw when you read some of the posts on this thread. Some have had to really fight to get their doctor to take their concerns seriously and not treat them like a paranoid over bearing mum and others have had fantastic docs who have whisked them off to a&e just to be on the safe side (I know which one id prefer)

I think OOH should be looked into because of the relaxed way they took my concerns, to not even take his temp was just shocking. Hopefully it was just a one off and it will serve as a reminder that sometimes us paranoid, over bearing mums are RIGHT

cantseemyfeet
so glad your DS is home and safe and well. Your story and the others on here made me tense with fear. Thank god you did what you did. I am posting partly to keep this thread up for extra awareness.

I'll just add that my dh had meningitis whem he was 13. He didn't have toxaemia though, but his parents were told he could have died. He was in hospital several weeks and missed 3 months of school.

Iheartdusty, Thanks for your post, and for keeping thread up. The more parents that read it and realise that docs arnt always right and its parents who know their kids better the more likely they are to get help if they feel they have been told to go home when in fact, they need hospital treatment urgently.
Fortyplus OMG you and DH are an unlucky pair, mind you I never thought both my neice and son would come down with what docs claim is "rare".
Am going to attempt to get DS back to nursery tommoro. Although he is pretty reluctant to go, think he has got a bit too used to being waited on hand and foot.
His nursery were really good and sent a present and cards for him so I am keen for him to get back into it before he gets used to being at home all the time.

I've just had DD2 screaming with headaches which didn't respond to nurofen or paracetamol. It took three visits to GP (OOH service & normal one) for them to actually help me. It would seem in our case it's just an ear infection but two GPs looked in them and said it was all OK whilst the 3rd said it was sore in both ears. How come two others didn't spot it is beyond me.

Anyway, I just had to second your advice to keep pressing with GPs if you think they're not helping you. In my case it was minor but you've shown how easy it could be to be something significant.

Hi pennies,

Hope your dd is feeling a lot better now.

It really is worrying that 2 docs cant spot something that should be routinely checked when child has high temp. Its soul destroying to have your child crying in pain and to be told that there is nothing wrong with them.
Like you I saw 2 docs who didnt think anything major was wrong and I basically had to wait for him to get worse before I yelled for more help.
That time wasted could of cost my son his life which is why I posted my story on here. Parents know their children a lot better that any doctor and you know the difference between a simple virus/bug which has them off colour for a day or a infection which totally wipes them out!

Well done for persisting with the docs, hopefully DD will be back on her feet in no time.

Glad to see things are going better.

I highly agree with your suggestion of trusting your instincts rather than the doctor.

Medicine is like any other profession, doctors are as likely to make mistakes as anyone else but unfortunately, their mistakes can have serious consequences.

I spent 18m fighting to have DS tested for peanut allergy, if we had decided to follow the GP's advice and that of a paediatrician, we could have killed him.

I don't trust DS's allergician either, every year I mention about something, he just laughs and dismiss my comment and then... when I come back a year later he tells me to do exactly the same I suggested a year before (which I have been doing anyway as I have realised that I'm more up to date than him!)