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Mass on brain 4 month old baby

937 replies

eastview · 15/11/2022 11:03

I don't even know where to start but I took my daughter (4 months) to the GP as she's done this flickering eye roll ever since she was born and they thought it was linked to reflux as did we but they referred us to a paediatrician just to be sure. They did an mri and eeg which showed seizures but found out yesterday that she has a 2cm mass on her brain. I am absolutely devastated and don't know where to go from here. They haven't given an indication as to what they think it is and we are just waiting to hear from them. All I'm thinking is the worst and I can't stop crying. I've been thinking about how I'm going to kill my self when my daughter dies. I feel hopeless and that I don't have the strength to do this. She is my only child and I tried for over 3 years to have her with miscarriages in between. They thought she was missing her cavum during pregnancy so that was traumatic too. I don't know what to do, I can't believe this is happening to us.

OP posts:
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Balloonsandroses · 08/12/2022 08:21

Good luck. Will be thinking of you and hoping it goes well.

Coxspurplepippin · 08/12/2022 08:21

Everything crossed for you and your baby.

stopbeeping · 08/12/2022 08:25

You are both so strong
We are all here for you

Less then an hour until your appointment

When you get home get into bed together and snuggle and rest

Give yourself permission to leave everything that needs doing and as soon as she falls asleep you go to sleep too xxx

Picoloangel · 08/12/2022 08:32

Will be thinking of you today. Waiting is agony. I hope there will be some answers today. 💐

OttilieKnackered · 08/12/2022 08:34

Everything crossed for you.

chercez · 08/12/2022 08:40

Thinking of you, so sorry that you are going through this.

SeaGlassShining · 08/12/2022 09:13

Thinking of you and your beautiful girl xx

dontcallitsavvyb · 08/12/2022 09:16

Good luck op, will be thinking of you x

MCbadgelore · 08/12/2022 09:17

Thinking of you and your lovely little girl Flowers

Enko · 08/12/2022 09:25

Thinking of you

FatEaredFuck · 08/12/2022 09:30

Realise as I write this I hope you're in your appointment now. I'm sorry it came after such a rough night in A&E but better time her bad night for before you went to A&E than the night afterwards! At least you have the opportunity to discuss it.

You're doing everything right. Got my fingers and toes crossed tight for you both.

Trudij123 · 08/12/2022 09:37

Hope all goes ok @eastview

Latetothetable · 08/12/2022 09:47

Thinking of you x

BeesAndCrumpets · 08/12/2022 09:47

Hoping today goes well and you get some answers 🙏💜

minmooch · 08/12/2022 10:04

Thinking of you today - I hope you get some clear answers today and a treatment plan in place.

It's all scary at the moment and you must be extremely exhausted.

Wishing you love and strength.

BaddogGooddoggy · 08/12/2022 10:23

Sending love and every good wish to you and your beautiful child OP 💕

uncomfortablydumb53 · 08/12/2022 12:00

Thinking of you and DD
Sending love

daisies30 · 08/12/2022 12:30

Thinking of you & your darling baby Flowers

Jaybird43 · 08/12/2022 12:36

Thinking of you, OP. Praying for the best news xx

Adarajames · 08/12/2022 12:39

Have been following but not posted til now, just wanted to let you know I’ve been thinking of you and wishing you all the best

Highfivemum · 08/12/2022 12:42

Thinking of you today. Wishing you and little one all good wishes.

SirChenjins · 08/12/2022 12:43

Sending you the very best of luck and hope it all goes well for you and your darling little girl x

OldFan · 08/12/2022 12:50

Sorry to hear she hasn't seemed her best.

Praying you get news that's not too bad and useful. x

Freddiefan · 08/12/2022 12:52

Another one here thinking of you and your beautiful baby x

eastview · 08/12/2022 12:57

Thank you so much everyone for your messages. They said they don’t think it’s a brain tumour because it didn’t light up on an MRI as a tumour usually would and no fluid around it which would indicate a tumour. They think it’s just a part of her brain that’s developed differently and that she will need to be on anti seizure medication for life. They will keep doing MRI’s every 6 months to make sure it’s not growing (which would then indicate a tumour). They seem to think she’s going to be fine and the priority is stopping the seizures and that her brain has probably always been this way. They sent to great ormond street just to see if anyone had seen a tumour like just to ride it out it but nothing back from them yet however the neurologist at Cardiff seemed to think they would think the same as her. She also said nobody at the MDT meeting seemed to think it was obviously a tumour either (just likely that her brain developed this way) No plans for any surgery now or ever which is good. It's so much better than I thought. Of course I am still worried as there's still potential there to be a tumour and I am gutted that she has to be on medication for life but we can manage that and she's well and that's the main thing. Xx

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