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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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Blossomandblooms · 12/05/2023 13:31

How did you get on @eastview? I've been thinking of you lately and your beautiful LO x

SirChenjins · 12/05/2023 13:35

Joining @Blossomandblooms in wondering how your DD is getting on @eastview - I know her appointment was this month, so hopefully everything went well or that you're doing OK if she hasn't been to GOSH yet Flowers

Always4Brenner · 12/05/2023 16:43

How’s little sweet angel doing and how are you? Hugs.

eastview · 13/05/2023 21:58

Hey everyone! So sorry for the radio silence, my Mumsnet app isn’t working for some reason but I’m on the web version now 😂 we were meant to be going to GOSH on Monday but they couldn’t fit her MRI in while we were there so it’s all been moved to the 5th of June now which is good as we live 3.5 hours away so means we don’t have to go up twice. Dad has to stay in a hotel which is so expensive so I’m so glad of the change of date as it’s saved us a fair bit of money. Also we wouldn’t have been able to go on Monday anyway as me and the Delilah currently have Covid 😢 should be negative any second now as we have had it a week. She is absolutely fine. Had 1 rough day where she was sick all day but totally fine now! Pic of my girlie today 🥰

Mass on brain 4 month old baby
Mass on brain 4 month old baby
OP posts:
Adarajames · 13/05/2023 22:07

Such a happy little soul! 🥰

We’re in SE London so maybe a bit too far out, but could offer a bed if saves you lots of travelling and money

coxesorangepippin · 13/05/2023 22:10

Absolutely gorgeous!!

Picoloangel · 13/05/2023 22:15

Beautiful 🤩

Jaffacakeorisitabiscuit · 13/05/2023 22:15

She is just the bees knees. Pleased COVID wasn't too awful for you. Hope the GOSH appointment goes well.

ArabellaScott · 13/05/2023 22:41

Oh, what a gorgeous smile! Glad all is going well for you, OP. Hope all's better soon from covid.

Crikeyalmighty · 13/05/2023 22:44

My goodness- what a stunning little girl. Big hugs OP- you will get the best care at GOSH

spiderlight · 14/05/2023 00:39

Hello smiler!! I do love seeing her pics. Glad she's doing well and I hope the June appointment goes smoothly with good news for you all.

Blue2021 · 14/05/2023 08:37

She's beautiful - thank you for keeping us updated and sharing pics of your gorgeous girl.

SirChenjins · 14/05/2023 08:46

What a gorgeous little girl! Thanks for sharing the photos and for the update, and hope all goes well on the 5th June 😊

adriftabroad · 14/05/2023 13:13

She has grown! Thanks for the update x

eastview · 14/05/2023 16:44

Thank you so much everything! And especially @Adarajames thats such a kind offer. It’s really astounding the support from everyone. She is finally Covid negative today and catching up on some sleep 😂

Mass on brain 4 month old baby
OP posts:
gogohmm · 14/05/2023 17:22

Just caught up having read your post back last year originally.

Dealing with seizures isn't easy, but want to assure you that you do learn to cope - dsd had many every day and is the happiest person you can meet. Took a lot of trial and error to get the meds balanced.

Always4Brenner · 14/05/2023 19:00

What a sweetie and hasn’t she grown? Lovely smile as always, hope all goes well in June.

MCbadgelore · 14/05/2023 19:03

She’s impossibly cute!

I’m borderline too old for any more and your DD makes me (momentarily!) sad about that!

Fingers crossed for June xx

slowquickstep · 15/05/2023 18:56

Such a smile💕So lovely to see your update x

NotMyselfWithoutCoffee · 15/05/2023 19:59

Aww love her, hope you get some answers soon. ❤

ChristmasChopin · 16/05/2023 05:50

What an absolute darling she is. That beaming smile!

Glad she's now Covid-neg.

How are you doing? It still must feel overwhelming at times.

Very best of luck for the 6th. We'll keep on sending positive thoughts your and her way. GOSH will provide the very safest of hands.

eastview · 31/05/2023 13:52

Thank you everyone ❤️ we have had another really hectic week. She had a seizure for around 2 hours on Saturday (nothing like this has ever happened before) which resulted in us having to call an ambulance and spend 2 nights in hospital. She did have a slight temperature so maybe that’s why. Woke up today and she’s now covered in a rash so waiting for a dr to call back. Due to travel to London Sunday so praying that we don’t have to put it off any further. She is fine in herself except for not really sleeping well but I am really struggling. I am absolutely exhausted and barely had any help with her previously (I don’t like to leave her) but most definitely won’t leave her now after that seizure. I’m mentally drained. House is a mess. Living on junk food atm. She was on antibiotics, her usual medication for her epilepsy and calpol so I literally had to pin her down 9 times a day and force the medication down her because she hates it which stresses me out so much and she just looks at me so hurt that I’m doing it to her. Then also doesn’t trust me to feed her for ages afterwards. She has been through so much (and so have we) I just don’t know how much more I can take 🤦‍♀️

OP posts:
WhoppingBigBackside · 31/05/2023 13:58

@eastview , you poor thing. You need some rest, but you know that.
Is there someone who could help - a sibling, parent or friend?
Hope you both get to a more ok situation.
Flowers DaffodilFlowers

spiderlight · 31/05/2023 15:41

Oh, bless her heart. So sorry you've had such a rough few days with her. You must be on your knees. I hope she's soon back to her usual smiley self.

Always4Brenner · 31/05/2023 16:57

Hugs to all of you. Hope all will improve now.