Help please

[misswinky34]

My month old son got diagnosed with BM ecoli strain a week ago. He was very poorly and needs 21 days IV anti biotic infusuons. No one has explained to me about how he caught it and I am since making my hands sore from repeatedly trying to disinfect everything in the house. I'm terrified it's going to happen again and I feel like i have failed him as a mum. I can't get the vision of him struggling with photophobia and being held down getting cannulas put in. We were sent home from the out of hours GP and in angry about that. Everyone just keeps saying it's just one of them things. I'm really struggling here with understanding things and guilt. And I don't know how to prevent something when I don't know wher it came from in the first place. I feel like there's just hundreds of question marks hovering over my head 😭

[paigerprincessa77]

I would love to give u answerhow they get ecoli meningitis as my daughter got it at 10 days old . I was told it could have been from what I ate while I was pregnant lunch meat , hot dogs, etc. But they will never be able to pin point it . The best advice I can give u is that this is a very serious illness but they do get better fast . And it could be long road iam not saying this to scare u or make u more upset just take one step at a time . But I would ask the dr if he got this earlier buy ur just finding this out now ? Also u didn't fail as a mom at all ur a very strong mom to be by ur baby's side threw all this .

[Dixo in reply to paigerprincessa77]

Hi,how old is your daughter now and did she make a full recovery??Wish her good health!

[paigerprincessa77 in reply to Dixo]

She is 6.5 months old she was in the hospital for 2 months on a pick line with meds . She than got hydrocephalus which is fluid build up in the brain a week and half ago she went for brain surgery and got shunt and tube which has made her such a happy girl . Her head has become smaller she eats so much better plays just happy go lucky. She didn't have any brain damage from the menigitis but dr say she has 40% chance in the first yr it could come back. So far so good .

[paigerprincessa77 in reply to paigerprincessa77]

I'd also like to say iam from Canada I know in other places in the world they do things differently but as a mom to mom it nice to speak to someone that has the same sisuation. If u feel need to ask me anything feel free to . I will pray Fro ur little one just be strong they get well fast

[Dixo in reply to paigerprincessa77]

Wow,thank God she is now a happy go kind of girl! And thank goodness she is hitting all her milestones for her age! Hopefully the Infection doesn't re-occur again as per the docs' guess! Wish her good health. My daughter had bacterial meningitis st 3 days but thank God she made through it and is hitting all her milestones for her age....she is now 4.5 months and learning to sit!

[Cloudlover in reply to paigerprincessa77]

I really don't think it will come back. I feel your baby is vety strong and a real fighter! So hang in there mom and fight with her. She needs all the help she can get right now. God bless and thank God that you baby is a warrior princess who will live and be strong all the days of her life after this fiasco.

Cloudlover

[abracad]

Oh my word, you poor thing. Firstly I would say as a Mum that it is usual to feel responsible in some way and in my view that means you are a fabulous mother. My GP once explained to me that I could share eating a piece of chicken with my child and it would be lottery as to who would digest that one miniscule bit of bacteria. Then it would be a further lottery as to how that persons body reacted to the bacteria. You my dear will probably never know where the bacteria was picked up but I guarantee you that it was not your fault. You didnt invent ecoli. It sounds like your little one is now getting all the medical help but will need Mummy more than anything else. If you have cleaned then that's done. So, look after yourself now, you will need to also have a little tlc. I am sending you a bit virtual hug ( a momma bear hug my 21 yr old daugher calls it).

[StrawberryCream]

Hi Misswinky.

I am wondering if you are from the UK? If you are I would suggest that you ring the Meningitis Now helpline which is freephone 0808 80 10 388. They are very helpful and understanding and will listen and talk through your worries with you. Sometimes it is more helpful to have a conversation and hear an understanding voice. They will also be able to send you helpful information and there are other services you can access as well such as visits from a Meningitis Now community support worker, counselling etc.

Best wishes to you and your little one.

[misswinky34]

Thank you so much. All of you ❤

[misswinky34]

Paiger,

they said they think my son may (not sure) have got it as a result of him being delivered by forceps, as one of his tear ducts got compressed which in turn resulted in an eye infection. They think this because it's a direct route to the brain.

What I don't understand is, he got the eye infection at 1 week old, but was well until week 4 which is when the BM took hold. That doesn't make sense to me? You mentioned about your diet when you were pregnant. Was your little girl well in the 10 days up to her Getting it? This is the part that confuses me. Surely if the Ecoli was in his system, wouldn't he have been ill?

[paigerprincessa77 in reply to misswinky34]

She was 6 weeks early also . So she was in nicu right away . First few days she was great than I noticed dark almost black freezing feet than her skin went a reddish black almost and I asked the nurses they went concerned. A day later she wouldn't eat so she was about 7 days old I knew something was wrong cuz she wouldn't cry . Than at 10 days old she had a sezier and turned blue in front of me and that's went the Dr's started listening to me . She had 5 seziers that day and a LP was done and they said menigitis. We were than flown 10 hrs away ( driving) to London ontario sick kids .

[misswinky34 in reply to paigerprincessa77]

The whole thing is so terrifying. 👎 If any things has been learned from this it's that I can trust my instincts, we got brushed off too when I took him to the emergency doctor, I won't let that happen again. How frustrating for you, that it was happening right under their noses. Interesting about the cold freezing dark feet, my son had that too. I remember commenting on it. And the doctor saying all babies have cold hands and feet. 😔

[paigerprincessa77 in reply to misswinky34]

If u read about menigitis freezing feet & hands are a sign . As mothers we know when something not right with our children. Now a days cuz Dr's are so busy we have to really stand up or go to a different hospital. My daughter doesn't deal with the hospital where we live we fly every month to London ontario to see all her Dr's . Iam so thankfull for that. How is your little one doing ?

[misswinky34 in reply to paigerprincessa77]

We're just taking each day as it comes. We're back for daily anti biotic which is through a picc line too. It's running through his ankle which is not ideal because he kicks it with his other foot and he's really good at peeing on it 🙄 Had to change the bandages a lot since this started. Did they ever discuss inflammatory markers with you? It was a blood test that did on Charlie that is supposed to give an indicator of the severity of pressure in your brain, the doctor told us he's seen it well up in the hundreds with BM and Charlie's was 30 at the first test and 16 on the second. I was just curios about everyone else's numbers. It's the middle of the night in the UK but I'm still reeling from everything that's happened and can't sleep. 😔 I just wushu I could put him back in my womb where it was safe.

I'm glad your little one is recovering 😊

[paigerprincessa77 in reply to misswinky34]

Awe poor little guy. Aaliyah my daughter actually had what was called a brovic placed in her neck and came out by her nipple something like a pic line but better. No I don't recall them telling me about the " marker" she's had many many mri which she did have a pin size puss on the back of her brain . But it was gone by the time we got to go home. And then we dealt with hydrocephalus which I would ask ur Dr about . If he hasn't said anything about it yet

[misswinky34 in reply to paigerprincessa77]

No Ines said anything yet. But there's another lady I have been talking to who has the exact same thing as your daughter, and has said the same it's made him much happier. We've got follow up care between 6-8 weeks and they have said that we need to Monitor his milestones markers. They are doing an audio test on him in a couple of weeks time.

[paigerprincessa77 in reply to misswinky34]

6-8 weeks that seems like such along time . If he does have it u will know by his head . It happened fast with aaliyah I noticed right away and it got bigger fast. She won't eat much sleep never lol she wouldn't play kinda like the menigitis was back but her head got big and started Lenin on the right side.

[misswinky34 in reply to paigerprincessa77]

I may ask then today when I go to get his Infusion about that x

[kaledismail in reply to paigerprincessa77]

Hi ..Our son is having MRI scan tonight and neuros suspect hydrocephalus .he suffered ecoli meningitis atday1 he is now 6 weeks and finished antibiotic. I wonder if you dond sharing how did they treated Aaliyah? Thank you so much

[paigerprincessa77 in reply to misswinky34]

I wish I could send u a pic of my daughter she is and always has been the happiest baby . To give u hope and strength. For ur little guy .

[misswinky34 in reply to paigerprincessa77]

I bet she's lovely, knowledge is power to me, and I can't just sit there I have to google the hell out of things which I always do, but it's nice to be able to listen to someone's ehos bee through it 😊

[paigerprincessa77 in reply to misswinky34]

Best advice I can give u DON'T GOOGLE TO MUCH OR BELIEVE EVERYTHING ! it could make u worry to much .

[Kjismail]

My son was two days old when he was rushed to A E he is now recovering still in hospital with Iv antibiotic. I dont know how he contracted. My wife delivered normal but had her water broke 36 hrs prior. I dont think is to do with hygiene or any mums fault. Apprently the bug is spreading around hospitals. We are scared of going home.

[misswinky34 in reply to Kjismail]

I've been home a week now kjismail and I feel slightly more relaxed but still very nervous in general. I'm guessing it's part of the process to feel way. Jus take each day at a time. It's all you can do x

[Kjismail in reply to misswinky34]

Thank you for your advice. I will try that..