my perfect littlr girl is in hospital with meningitis

[StopEatingThatMud]

And I'm really really scared.

Is anyone up to hold my hand and tell me it'll be ok?

what a nice update to start the day on... and yes to the physio. Here's to another good day

Congratulations on nephew!

Such good news that B keeps improving and is no longer in a life threatening situation. Try to take it day by day and focus on little steps, don't expect wonders as there may be a long road to recovery. She has already come a long long way.

Tomorrow I would start talking with the hospital about a more long term treatment plan (physio, dietary advice, possibly speech therapy, etc.).

Have they already done a hearing test?

Hope you will all have a good day today.

Hello Stop,

I have been following your thread from the start but haven't really had any useful words to say. I'm so glad things are looking up for you and little miss B. She sounds like a real fighter, you do too.

Very pleased to hear your news, Stop - sounds like she's starting to mend well. Physio will be a good plan to help her.
And congratulations to you on your new family member!

Congratulations on your little nephew! What a busy time the grandparents have been having!
It will be at least a month before your little one recovers, think how tired you have been just with stress and being in hospital and then multiply the tiredness for her. Its great that she is taking an interest in her surroundings, and is looking around her, thats the main thing. Even if she is able to sit up in the buggy, with support and resting her head against its back, and able to reach out for little toys thats great at this stage. It will be only natural for her to be tired easily till she builds her strength up again. Children are very resilient. Wishing you all well.

So glad that B is on the mend. She will be low in energy for a while- as will you! It takes a while to recover from the adrenalin and sleep deprivation once she has turned the corner. Keep trying to get sleep yourself, eat well etc etc.
Congratulations on your nephew. Enjoy the newborn cuddles.

That's s great up-date Mud, thank you. Wishing B more good progress and congratulations on your new nephew. :)

I'm so glad to hear things are going in the right direction, lots of progress and rapidly too. Great news about B having a cousin too! Take good care x

One step at a time but they all look in the right direction......

Hey everyone,

Didn't post yesterday as I was a big old teary mess and I just knew all I'd do would be moan! B was very grumpy yesterday and I'd been covered in regurgitated weetabix by 8.30am so it wasn't the greatest day!

She's finished her antibiotics this morning and her infection markers seem to be heading in the right direction (down at 22 from 300 at the last count) so they're not looking to continue with any more for the time being.

Her red blood count has dropped again to below 8, which is where it was when they decided she needed a transfusion last time and they're not sure why. They mentioned yesterday about doing another transfusion, but its complicated by the fact when they first tested her blood it contained antibodies and they don't know why. By adding more "foreign" blood with another transfusion its likely to increase the number of antibodies, which will then attack her red blood cells....meaning she needs another transfusion....meaning more antibodies...and so it goes on!
For the time being they've said they just want to monitor her for a couple more days and see how she goes, as long as her HB stays stable and doesn't drop any further they don't seem too worried just yet.

They'll hopefully take her PICC line out in the next day or so, so we'll see how that affects her movement. She's still moving her right side much less and not sitting unsupported but both seem to be very slowly improving and we've discussed a physio referral again with the doctor this morning.

And she's just woken up, so I'm off for now.... :)

Keep going upwards B!

Thanks for the update. Hope all keeps on improving.

Hey there, still holding hands- it sounds like you need to have a good old moan and get it all off your chest. Steady improvement every day is good.
Perhaps DD is grumpy because she is tired what with her low blood count. As to nutrition, isn't chicken soup meant to be the thing for convalescents? Ie foods which are light but nutritious. What was her favourite before she was ill?

You sound surprised at being a big old teary mess! You have all been through so much something has to give at some point. As for moaning - if you need to this is the place.

Glad things are improving for B, hope her HB improves soon as well.

xx

8 is low but some hospitals dont tranfuse until 6 so you have a little bit of wiggle room.

Can you ask about single donor transfusions? I dont know if this will help at all but my DD was allergic to blood products (because she had so many transfusions). They switched her to single donor to cut down the risk. Blood bags are made of a mix (I didnt know this before).
Maybe if they are single donor it cuts down on the amount of antibodies?

That might be a big load of old rubbish I just told you there but someone medical would know better

I have been following but not posting. I am glad your little girl is on the mend, I know how awful it all is.
DO give yourself time to have a sob and a rant. It is REALLY important.

Blood units are not made of a mix of donors, MrsDV! Blood products are, plasma, blood factors etc. but not actual red cells or platelets. They are single donor. Your DD would have made so many antibodies that there may have only been a few donors left in the UK who matched her profile - this does happen. When I worked in Oxford we had a man who was like that - the donors were bled specifically for him because they were the only matches to his antibody profile. It was terrible if they were ill or couldn't donate for whatever reason!

Mud, sorry to hear your little girl already has antibodies, that's unusual - if she makes more antibodies she won't attack her own blood cells, only the donor cells. The antibodies she already has will be checked against donor units to make sure they match properly but of course that won't stop her making new antibodies. In our hospital her Hb would need to drop below 7 by now to transfuse her again, depending on her levels of overall wellness - but in her case, if she has actual red cell antibodies (there are other sorts) then there are other methods to try of bringing her Hb up again before transfusion.

What!!!! Why did they tell me that then? Did they think I was too
Stoopid to understand the technical explanation ffs
Thanks for putting me straight. I won't be repeating that claptrap again

Welll - when you give blood, each blood donation goes into a single bag, and then the plasma is usually taken off it and other stuff done with it.
BUT for a transfusion, often more than one bag is required, so that would usually mean that each transfusion would be from more than one donor, as each donor would only give one bag. Maybe that's what they meant?
I don't know because I wasn't there and don't know what they told you - but certainly the other products, like fresh frozen plasma, cryoprecipitate and clotting and other factors are made from pooled donations, red cells and platelets aren't.

MrsDV/thumbwitch thank you (and of course everyone else for your lovely messages!) that's really useful. The doctor on the other night did explain things well but I always struggle to remember stuff I'm told verbally and take things in much better when they're written down. She also had to rush off to an emergency bleep halfway through and DP wasn't here so it'll be good to show him your posts.

Thumbwitch, can I ask what other methods can be used to increase hb if you have time to explain? That was about where we got up to discussing when the doctor had to rush off and yesterdays doctor on rounds was very vague and didn't really give us a proper answer.

We've just had a lovely breakfast with B sat in a highchair feeding herself a few bits (all lefthanded!) And reaching out for things. There was talk of taking her picc line out today so if it does come out hopefully she'll be more comfortable with moving her right arm again. Physio have said they want to wait and see how she recovers on her own before seeing her and to be fair her right leg movement has improved quite a bit in the last couple of days so fingers crossed!

I believe the most common method is to give erythropoietin, a hormone that the body produces to increase red blood cell production. I don't know whether it is appropriate to use in small children though, I have to say.

All right, have just looked it up and it appears that erythropoietin (sometimes nicknamed epo, but not the same as Evening Primrose Oil of course!) is used in small children who are on renal dialysis, a common reason for loss of haemoglobin because the kidneys produce erythropoietin but also dialysis can cause a low level of damage to the red blood cells. It appears to be well tolerated with few side effects on children as young as 2.5, so it's a feasible alternative.

Sorry just checked back to see how old B is (no memory here!) and see she is only just 1, so I still don't know whether or not they would use it but probably.

Glad to see she has had more improvement - everything crossed she keeps going in an upward direction!

This stuff looks nice and has iron to help bring the HB up
www.realfoods.co.uk/product/11849/ella's-kitchen-organic-spinach-apple-swede-baby-food-120g

Just checking in Mud. Glad to see that B is making some improvements and hopefully her HB levels will start to improve too

I don't know if you can give this as the hospital may be giving some of the stuff but minodex is wonderful for picking children up after illness. It as all the vits/ iron/ zincs etc they need. It may or may not help but maybe worth asking Dr about?

Hope things re improving - little yay for B eating in her highchair - clever girl

MUD so so lovely to hear that you guys are doing so well. What a wonderful little baby B is!!!