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New thread- mass on babies brain

151 replies

eastview · 07/06/2023 20:16

Hey everyone I thought I'd start a new thread to update as I think that one is about to get cut off as it's so full. Thank you for all the well wishes and I know lots of people have been thinking of us.

They said that they don’t know if the seizures are coming from the lesion on her brain still as the seizures are coming from the back of the brain but the other side so it could just be a coincidence. The mri scan was the same as last time nothing had grown etc which is good. They’re going to do something called a PET scan on her in a few months which should give them more info. Definitely no rush to do any surgery as they're still not sure that the lesion and seizures are linked. They’re going to refer her to a ketogenic dietician and look at her meds as the priority is helping with the seizures until they can figure out if they can do surgery in the future. They’ve done genetic testing on us which will take about 6 months. They’re really impressed with her development and loved her so much. It's not gonna be straight forward but they said the seizures she has aren't dangerous and won’t cause brain damage it’s just about controlling them for now. I can't even explain how amazing this little girl has been these last few days. Not 1 single tear the whole time and was laughing and smiling the whole time. I am beyond proud of her she just takes it all in her stride and is just the happiest little girl ever. Here's a little pic with all her wires on bless her. She sat like a statue for almost an hour while they put them on her head. She's just incredible if I do say so myself X

New thread- mass on babies brain
OP posts:
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spiderlight · 08/06/2023 16:06

Oh my goodness - she is an absolute joy! I adore her. I'm glad the lesion hasn't grown and that the seizures aren't harmful. Hopefully you're a step closer to getting them properly under control now.

coxesorangepippin · 08/06/2023 16:09

OMG what a sweetheart!!!

Huge hugs op and thanks for the update. We're all thinking of you

Moonlightdust · 10/06/2023 23:39

She is such a ray of sunshine ☀️

PoseyFlump · 12/06/2023 19:51

What an amazing little superstar she is and what an incredible mummy you are! Inspirational! I'm blown away by your updates. Thank you for starting a new thread ⭐️

lalalallala · 13/06/2023 05:56

She's so cute xx I'm glad all went well in the hospital

Nottogetapenny · 13/06/2023 11:00

No wonder you are so proud of your adorable, beautiful daughter. I’ve been following your thread, it’s so good that nothing has changed. Hopefully she keeps well
Thank you for keeping us all informed, people really do care and wish you all the very best wishes. 🧸🌸😘

eastview · 08/07/2023 23:02

Hi everyone how are we all?

Some big news. Great ormond street have had a couple of meetings and concluded that they think her seizures ARE coming from that bit of extra brain tissue and are offing her surgery. They looked though past patients and found another child with a very similar case to us and surgery worked which is positive. We have an appointment next month to run through it all and we are looking at about a 6-9 month wait for the surgery. I am absolutely terrified but i would be so over the moon if this is fixable. She's been having some very bad days lately and the bigger she gets the more it's upsetting her (and me). The thought of my baby girl actually having surgery tho is giving me very bad anxiety but I know they wouldn't risk it unless they were sure.

She is also starting keto any time as she is drug resistant. They tried to take her pre keto bloods yesterday but weren't able to get enough so tired in hands, arms and feet and still wasn't enough so we have to go back next week. She was so upset bless her but quickly forgot about it and was playing with the nurses.

It's her first birthday next week and we are having a big birthday party at our local adventure farm. I did a cake smash at home on my phone, here are some pictures of my cake crazy girl.

I'll keep everyone posted with the appointment with the surgeon next month.

Xx

New thread- mass on babies brain
New thread- mass on babies brain
New thread- mass on babies brain
OP posts:
MonkeypuzzleClimber · 08/07/2023 23:13

Gorgeous as ever ❤️
Absolutely understand your anxiety about surgery, but it’s also really good news that there may be a treatment that would leave her seizure free. Really hope she gets some improvements from the keto in the meantime x

Rapidtango · 08/07/2023 23:22

Grin gorgeous photos. The lavender pic is just beautiful and her cake smash is brilliant.

It must be nerve wracking - on one hand knowing GOSH have a solution, on the other, she's your precious girl and you don't want her to go through so much.

Wishing beautiful Delilah a very happy 1st birthday, and wishing her wonderful Mum strength and peace.

spiderlight · 08/07/2023 23:50

Beautiful photos, as ever! I hope she has a fantastic birthday.

The prospect of surgery is huge!! I can't imagine how terrified you must be, but that wouldn't even think about it if the benefits didn't outweigh the risks, and imagine if that was the end of the seizures for good? Keep all her MN aunties posted! We're all holding your hand.

ZeldaWillTellYourFortune · 09/07/2023 00:47

She just keeps getting more beautiful.

You are in good hands at GOSH; I am sure they are proceeding with all due caution.

For what it's worth, my work takes me into contact with a renowned "brain surgeon." I have been in pre-op with him (I am not in patient care, but sometimes facilitate photo/video that we use to interest potential philanthropists) and as he says, "it's just another day in the office."

These skillful people who are confident and brilliant enough to do neurological surgeries really are impressive. They know the stakes, are very confident/diligent and they would not suggest it if there weren't a very good possibility of full success.

Thanks for keeping us posted. It's always like a ray of sunshine to see your little girl. Have a great time at the birthday party and do send pix!

notapizzaeater · 09/07/2023 10:51

She is absolutely adorable. Glad they've some options, the surgery will be scariest for you, your beautiful DD won't know or remember anything about it.

RichardOsmansXraySpecs · 10/07/2023 16:18

That's really positive news, terrifying for you of course but it will over with soon enough. My son had a heart op at GOSH and they really are very very good.

Happy Birthday to the gorgeous girl ❤️

birdywillow · 10/07/2023 16:25

What a beautiful little girl, she's very brave. I hope the surgery works for her (and for you) and she gets much better. Fingers crossed for you all x

Always4Brenner · 10/07/2023 17:40

Happy birthday little angel handhold here for mum. Love the photos.

SirChenjins · 10/07/2023 18:08

Happy birthday to your gorgeous little one! Hope you all have a wonderful time 😊

I know you’ll be dreading the surgery - DS went through heart surgery the day after his second birthday, it was terrifying - but the fact that they are offering it to you and are confident of a good outcome is brilliant. Before you and she knows it this will all be behind you, and you’ll be able to relax. Keep us all posted (and upload lots of photos - she’s utterly adorable!)

eastview · 10/07/2023 22:52

Thank you everyone ! I know it's so scary but I have to try to push it to the back of my mind until the meeting otherwise I'll make myself sick with worry. We have been very busy, she had a lovely party. And will be 1 whole year old tomorrow. I can't believe there was a time I thought she wasn't going to make it to see a birthday. I'm so greatful and proud of my happy girl. Unfortunately we are forecast rain tomorrow so it's looking like soft play for the birthday girl 😂 she's had a fabulous day today too spending her birthday money 🤣

New thread- mass on babies brain
New thread- mass on babies brain
New thread- mass on babies brain
OP posts:
Hungrycaterpillarsmummy · 10/07/2023 22:59

Aw happy birthday, little one!

What a cutie pie!

TarquinOliverNimrod · 10/07/2023 23:11

Oh my heart ❤️ your little girl simply radiates joy. What a beautiful baby ⭐️ 💫 💝 wishing you all the very best.

Sweetpea1532 · 11/07/2023 04:26

I love her purse@eastview 😅

greenspaces4peace · 11/07/2023 04:41

my dh (yes much older than your dd ;) )had cranial surgery for his seizure disorder. it was a massive success!
virtually painless as the skull is not a weight bearing bone. his incision line fully healed and is entirely covered by his hair line. because we were from out of town he stayed an extra night in the hospital (2 night stay).
he knew right away the surgery was a success, says he "felt" different.
was on meds for a few years following and then off all meds for several years now.
he has good memories of the testing process (thought the wada test really cool)
and he was fortunate to have both speech and memory on both sides of his brain. this was a good indicator for a successful surgery.
his growth was vascular (an odd clump of capillaries, which leaked blood, and caused the seizures) the tissue removed was the size of a pencil eraser.
positive thought coming your way for your dd.

radfordrunner · 11/07/2023 09:37

Happy birthday Delilah! What a little beauty x

MillyMolly74 · 11/07/2023 09:47

Happy birthday little cutie ! Sending so many best wishes ❤🎂

spiderlight · 11/07/2023 10:01

Happy birthday Delilah!! <3

ArabeIIaScott · 11/07/2023 10:41

❤Happy birthday to your gorgeous girl, OP! Have a wonderful day.

I know it must all be very worrying, but it sounds like she is getting really careful, dedicated care from the best in the field.