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encephalitits from 8 week vaccinations... what to do?

(17 Posts)
Wiggles9408 Tue 07-Nov-17 23:19:22

So my dd is 6mo she’s only had her 8 week vaccinations (given at 10 weeks) the story goes:

Shots in morning at 10:45, cried, settled, calpol, slept. Drank her milk, had a nap then at 1:30 she woke herself up and screamed in the highest pitches scream I’ve ever heard, she didn’t stop for hours, I had to hold her until she screamed herself into exhaustion and slept but only lasted about 10 minutes and if I took a deep breath she would wake with the same scream. Temp was about 38/39 and was on calpol every 4 hours.

Two weeks later I spoke to hv ‘yeah hats perfectly normal, completely fine! No worries!’... I have 3 nephews none of whom went through this reaction. Dd was booked for second set when she was 20 weeks but I broke down in the room and told the nurse everything about that day... she literally ran out the room to talk to the doctor who advised my dd symptoms sounded as though she had suffered an adverse reaction called encephalitits so she was screaming in agony all day because her brain was swelling, this could have caused serious brain trauma and my hv palmed me off. Anyway she’s got the second set on Friday at hospital so they can monitor her overnight and I’ll stay with her but I need someone to convince me to go through with it because the fear of making her tiny little body go through that makes me sick.

Any words of wisdom? I know it’s all about herd immunity but I just deed to think what might happen, the nurse said second time round can be worse if hat was initial reaction sad

Sorry for the long post I’m just so scared.

ShovingLeopard Tue 07-Nov-17 23:23:09

Oh gosh, your poor DD. No wonder you are worried. Have they talked through with you the risks of vaccinating versus vaccinating, and what treatment they can do in hospital if she gets encephalitis again? It sounds like they may not have given you enough information. It is very hard to think of all the questions you might like to ask when you are on the spot.

Battleax Tue 07-Nov-17 23:24:17

It's not JUST about herd immunity. It's for her future health too.

I'd be asking lots of questions.

Presumably they think this is the safest course but you're the parent and you're entitled to know why they think that, what the treatment will be if she gets a reaction and so on.

flowers

stayathomegardener Tue 07-Nov-17 23:25:35

I know it's not popular but I wouldn't have the second set done.
Which ones are they? If for example it was second mmr you can have her blood screened to see what the uptake was like from the first set.

Doodlepoppop Tue 07-Nov-17 23:25:59

Omg op! I'm not sure I would risk it although I would feel safer in the hospital

Atenco Tue 07-Nov-17 23:44:06

You must be really committed to vaccines to risk another bout of encephalitis. Most of the illnesses they are for, I had as a child, as did everyone in those days and I know no-one who had serious consequences from them. Polio of course is serious, but at the moment it is only present to three distant countries, so you could at least hold off on that for the moment.

Wiggles9408 Wed 08-Nov-17 07:25:32

Thanks guys.

shovingleopard no they haven’t given me enough information literally only that she will be monitored and that second time around can be worse.... :/ informed decisions are obviously overrated sad

Battleax I completely agree that it’s not just about everyone being vaccinated but that my dd’s health comes first but that’s why I’m stuck between a rock and a hard place, her health falls into both catagories of ‘do it’ and ‘dont Do it’ :/

stayathomegardener this will be her set of rotavirus and the 5 in 1 (no MMR this time round that’s the third set again).

Atenco I used to be completely committed to them prior to her reaction yeah, I just saw it as part of life that we all had to go through, but since this I just hate the thought of it. I know there have been a few outbreaks over the years and children have died which worries me but so does the idea of dd’s brain going through that again.

Feels as if I’m dammed if I do and dammed If I don’t.

welshweasel Wed 08-Nov-17 07:29:00

To be fair a high temp and inconsolable crying is a pretty common reaction to the 8 week jabs. I'd want to know on what basis they think you baby had encephalitis as it seems an odd leap to make to me, particularly as it sounds like they got better quickly. I'd go along with having the next set under observation if it were me.

allegretto Wed 08-Nov-17 07:30:50

I think you need to speak to a real expert before going ahead - I wouldn't do this without that. FWIW my parents are pro-vaccination, as am I but my brother had a bad reaction as a child and was advised not to have the others (not sure which one!) Herd immunity is meant to protect precisely the children who cannot have the vaccinations for medical reasons.

Y0uCann0tBeSer10us Wed 08-Nov-17 07:30:59

Wow OP, that must have been terrifying for you, and I’m so angry on your behalf that such a serious reaction was palmed off as ‘normal’. In your situation I think I’d proceed with extreme caution, especially as it doesn’t appear that they know which vaccine it was she reacted to. As pp have said, most of the diseases are very rare and as adults we weren’t vaccinated against most of them. If you do decide to go ahead, remember that they don’t have to come as a set, that’s primarily for logistical reasons, and it could be safer to get them one at a time. It would mean more visits, but then you could observe the reaction to each very carefully.

BendingSpoons Wed 08-Nov-17 07:37:34

Typically it's the 1st and 3rd set that cause high temperatures, because of the meningitis jab. I would hope this set would be better, although I get there is still worry next time, although I'm no expert on encephalitis. I had an inconsolable baby after those ones (spent the evening walking round the park to try to distract) but probably less than you describe. Hopefully your doctor is just being overcautious and it will be ok.

Wiggles9408 Wed 08-Nov-17 08:37:39

welshweasle it was the screaming, like nothing id ever heard before, she’s never screamed in that pitch before or since that day, she sounded like a mandrake from Harry Potter, it wasn’t crying by any stretch of the imagination it was screaming as if she was being murdered continuously from about 1:30 until the following morning with intervals of exhaustion that lasted about ten/ twenty minutes. On that basis they diagnosed it.

It’s believed that the jab that causes this reaction is the pertussis which is part of the 5 in 1 vaccination so unfortunately that one is part of all three sets of vaccinations given.

This is what I found:

It has been established that pertussis and measles-containing vaccines cause encephalitis. For the purposes of VICP guidelines, onset of encephalitits from pertussis-containing vaccines is 24-48 hours and between day five and fifteen for the MMR, M, MR and R vaccines.

The scream is called cry-encephalitis. The cause is infection of the brain from the vaccine virus/bacteria.
When the body is injected with virus/bacteria it can travel to the brain and cause encephalitis.
Encephalitis can be a reaction to any vaccine but the DTaP is most common.

Wiggles9408 Wed 08-Nov-17 08:46:48

Y0uCann0tBeSer10us exactly, I don’t know why I was told it was completely normal, I stressed to her how she was within those first 24 hours and that it didn’t seem right and she literally stepped in midway through me saying ‘my nephews and all the other babies I know have never reacted this way and..’ ‘alright it’s really nothing, it’s totally normal and you’ll scare the other mums!’ ( I was In my local baby centre with loads of other mums and babies) WHAT?!? at the time I just took it because I was shocked at everything that had happened but it makes me so angry she made me think I was going crazy and overreacting sad

Atenco Wed 08-Nov-17 13:49:38

OP please don't allow them to vaccinate her again. Some children just can't be vaccinated.

angelgirl23 Thu 16-Nov-17 21:00:56

No dont vaccinate her again. Please she already had a terrible reaction. If they want to monitor her in hospital surely that must tell you something. My son was vaccine injured I wish I could turn back time and not vaccinate him x

angelgirl23 Thu 16-Nov-17 21:02:18

Also its 6 in 1 now including Hep B x

shewolfmum Sat 18-Nov-17 23:26:06

Hell no ...

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