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Original poster

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:
Thread gallery
30
MichaelFabricantWig · 29/11/2022 08:54

Aw look how happy she is to see Santa!

ZeldaWillTellYourFortune · 29/11/2022 09:09

What a charming dress. Her smile and eye contact are amazing.

spiderlight · 29/11/2022 09:52

Oh, look at her!! She's just gorgeous.

mummydoris2006 · 29/11/2022 11:36

Oh @eastview that smile 😍. She's so cute and such a smiley little girl xx

uncomfortablydumb53 · 29/11/2022 11:59

The wait must be so hard for you but honestly in medical terms No news is good news

TeaPlzx · 29/11/2022 15:19

Beautiful photos. Thinking of your and your family!

BelgiumArse · 30/11/2022 14:18

Beautiful babe.

Wishing you well.

Flowers
OnlyFannys · 30/11/2022 14:38

eastview · 28/11/2022 18:10

No news from the hospital today guys so I'm going to take that as a positive. I'm still really anxious as I know there's definitely something but glad it's not urgent enough to have us in straight away. She met the big guy for the first time today. Shes definitely on the nice list 😅

She is simply too cute for words!

BlackSwan · 30/11/2022 14:48

Keeping you in my thoughts. x

Always4Brenner · 30/11/2022 14:49

Beautiful pictures thinking of you, hope you have the best Christmas ever,

Lingles · 30/11/2022 17:08

there's nothing quite like that toothless smile and that trust :)

Original poster
eastview · 01/12/2022 11:20

Small update. Hospital just called to check how she's getting on with her medication and said they they still couldn't come to a conclusion based on her MRI so have sent it to great ormond street to be reviewed by the experts there. This seems so strange to me how they can have no conclusion still or any idea as to what's going on. Back to stressing for me 🤦‍♀️

OP posts:
Igotjelly · 01/12/2022 11:22

eastview · 01/12/2022 11:20

Small update. Hospital just called to check how she's getting on with her medication and said they they still couldn't come to a conclusion based on her MRI so have sent it to great ormond street to be reviewed by the experts there. This seems so strange to me how they can have no conclusion still or any idea as to what's going on. Back to stressing for me 🤦‍♀️

Oh no, hugs from me. Fingers crossed you soon have a resolution ❤️

DuchessOfSausage · 01/12/2022 11:23

Thanks for the update @eastview . I hope they can find out. My thoughts are with you and your beautiful baby.

SunsetandCupcakes · 01/12/2022 11:41

Such a shame this is a post where you have to worry about the health of your little girl as it is just so lovely to see her in those gorgeous outfits, makes me smile seeing them but then I think of your worry. Hope that comes across right, I'm trying to say it is a lovely thread but isn't because you are so worried (as anyone would be)

Love her seeing Santa.

Hope you get some news soon.

ZandathePanda · 01/12/2022 11:45

The best experts in the country will be looking at her results. You couldn’t be in better hands. Xx

Jaffacakeorisitabiscuit · 01/12/2022 11:47

The people at GOS are world class. They will get to the bottom of it. Just so sorry you're having an agonising wait. Your lovely daughter is the merriest little girl - just a poppet.

Original poster
eastview · 01/12/2022 12:00

Thanks everyone. I am even more confused than I was before. I don't know wether to be more concerned or relieved because surely if it was obviously a brain tumour then Cardiff would have been able to see that? Or do they think it's something rare? Still no rush to get us in and the primary focus of the call was to check she was ok on her meds. Very confusing

OP posts:
BlackSwan · 01/12/2022 12:08

My son has been seen at GOS since he was diagnosed & he has had exceptional care. They have a lot of experience. I would see it as a good thing that they're involved & advising. No doubt you want answers asap, that's totally understandable. My heart goes out to you.

niugboo · 01/12/2022 12:13

I’m sorry you’ve still got no resolution and that they’re exploring all avenues.

keeping fingers crossed for you both.

niugboo · 01/12/2022 12:18

Re the no loss of awareness that’s possible with focal seizures.

Picoloangel · 01/12/2022 12:34

A relative of mine has had ongoing care for a different issue at GOSH. The care has been truly exceptional- I am so sorry that you have this additional worry but you’ll be in excellent hands. Have everything crossed for you and your beautiful girl.

sotired2 · 01/12/2022 13:21

They do often ask other hospitals for advice on these things to make sure they are giving the right treatment plan. GOSH are amazing and I would have no concerns about being sent there. I know far from home but they really do look after whole family especially when they know you are not loacal.

talkingmorenonsense · 01/12/2022 13:42

eastview · 01/12/2022 11:20

Small update. Hospital just called to check how she's getting on with her medication and said they they still couldn't come to a conclusion based on her MRI so have sent it to great ormond street to be reviewed by the experts there. This seems so strange to me how they can have no conclusion still or any idea as to what's going on. Back to stressing for me 🤦‍♀️

Referring to GOSH is a good thing, as there are so many paediatric experts there. It's fairly routine to get an opinion from GOSH. Fingers crossed @eastview that you will soon get the answers you need. Flowers

Somuchgoo · 01/12/2022 13:44

eastview · 01/12/2022 12:00

Thanks everyone. I am even more confused than I was before. I don't know wether to be more concerned or relieved because surely if it was obviously a brain tumour then Cardiff would have been able to see that? Or do they think it's something rare? Still no rush to get us in and the primary focus of the call was to check she was ok on her meds. Very confusing

My little one's tumour was sent for a second opinion at GOSH, so that does happen - however this was later along (after surgery), and we weren't told they were doing it - I saw it in the paperwork.

Perhaps it's more difficult for them to know what it is because it's quite small (I know it doesn't feel like it is!) and that makes it more difficult for them to determine what it is/see it clearly.

They clearly feel they have the right to check this properly rather than make any real decisions, and that's a positive. Do you know where it is in her brain btw?