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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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Inastatus · 09/02/2023 11:58

Just caught up with this thread and I’m so pleased to hear your latest update. I hope your gorgeous girl goes from strength to strength. Enjoy the rest of your mat leave.

KeziaOAP · 09/02/2023 12:45

Fantastic update, enjoy rest of your maternity leave. With very best wishes to you all Flowers

MrsPerfect12 · 09/02/2023 12:55

Great news!

elm26 · 09/02/2023 12:56

Amazing news OP, wish you and your family all the best xx

sevenbyseven · 09/02/2023 13:08

Really glad to hear that. Enjoy the rest of your maternity leave 🤗

Pinkwithwhite · 09/02/2023 13:26

Oh what amazing news! So pleased you updated OP.
I think a holiday sounds perfect :) x

justmewithmylifetoday · 09/02/2023 13:37

That's lovely news so happy for you and your little one op !

OldFan · 09/02/2023 13:45

Yay! I'm sure they will find different meds that help more with her seizures too @eastview x

ZeldaWillTellYourFortune · 09/02/2023 14:08

Very happy to hear this; was just wondering yesterday how she is doing. I hope you can relax and enjoy your leave, and her first springtime! Thanks and keep us posted!

Benjispruce4 · 09/02/2023 16:28

Great news! I think you all deserve a break as you‘VE been through so much anxiety. Have a wonderful time! 😀

uncomfortablydumb53 · 09/02/2023 16:39

What a wonderful update! You must be so relieved
Your beautiful girl will grow and surprise you every day, even if the seizures become her normal, they can be controlled and you have good medical care now
Sending you much love

Picoloangel · 09/02/2023 16:46

Such lovely news. So pleased. You deserve a holiday! Hope you all have a wonderful time x

EmmaGrundyForPM · 09/02/2023 17:36

Wonderful news. Enjoy your holiday

KirstenBlest · 09/02/2023 18:53

Thanks for the update. Hope you and little smiley have a lovely time.

Bellablahhole · 09/02/2023 19:05

What fantastic news ❤. I'm a bit tearful here! Just wonderful to read your update. I hope you enjoy a lovely holiday with your beautiful daughter x

Crumpledstilstkin · 09/02/2023 19:08

Fabulous news, enjoy the extra time on maternity ❤️

PoseyFlump · 09/02/2023 19:17

What a relief for you all! Enjoy that holiday, you deserve it! Flowers

CupOfAnxieTea · 09/02/2023 19:31

Beautiful news! You absolutely deserve that extra bit of maternity and holiday, enjoy every minute xox

slowquickstep · 09/02/2023 20:07

Great news, thanks for the update. Enjoy you leave x

spiderlight · 13/02/2023 19:08

So happy to read your update!

Emmamoo89 · 13/02/2023 20:24

So happy about your update. She's so beautiful 🥰❤

DuckbilledSplatterPuff · 13/02/2023 22:46

a happy update for you and your lovely little girl.

eastview · 06/04/2023 10:26

I hope everyone's well 🥰 just had a call from GOSH, they're going to see her in May. I am frantic/panicking and crying again. I just hate my girl being prodded and poked but I know we need definitive answers and they're the best in the world. Does anyone have any advice or experience? We live almost 4 hours away, do we have to stay in a hotel or can we both stay with her? I have no clue how any of this works and the lady on the phone didn't give me much info at all

OP posts:
MCbadgelore · 06/04/2023 10:33

Different hospital but at RMCH it’s one parent overnight at the bedside but we were able to access additional free overnight accommodation at Ronald McDonald House and there are some free studio apartments that can be accessed through other charities.

GOSH will definitely have similar although it might be more difficult to access when you are there for tests rather than treatment.

Have a look for parents accommodation on the GOSH website. I find I can get good peripheral info from the RMCH charity office too - it’s not their job (they are there to fundraise) but they know loads about all the little charities that shore up our Children’s Hospitals and as they aren’t clinical or admin staff they are more able to spend time with me and my queries.

Thinking of you! Try not to panic (easier said than done, I know) xx