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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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21
OKwhatsNext · 07/06/2023 20:29

OP I have followed your threads and felt your fear at the end of the last one, worrying about going in to hospital. I appreciate you are still waiting for answers and wish you the very best of luck for the future. Just wanted to say how absolutely beautiful your daughter is.

ArabeIIaScott · 07/06/2023 20:31

Oh my word, look at that wee star! So glad to hear a reassuring update, OP. All the best to all of you.

Basilthymerosemary · 07/06/2023 20:36

She's just the sweetest and such a champ. Sending all the best wishes.

FlatArthur · 07/06/2023 20:37

Oh bless her! What a happy little sausage.

toomanyleggings · 07/06/2023 20:38

She’s adorable. I hope you get some peace of mind soon x

Oysterbabe · 07/06/2023 20:46

What a superstar she is 😊

Bellablahhole · 07/06/2023 20:49

Oh my, she continues to be the most beautiful and joyful little girl. That smile of hers...❤. Here's hoping for a positive way forward x

RichardOsmansXraySpecs · 07/06/2023 20:53

Bless her gorgeous heart taking it all in her stride, my kids would've been screaming and ripping those wires out.
Hope you're bearing up too OP, you've been through a lot.

Rapidtango · 07/06/2023 20:54

'They’re really impressed with her development and loved her so much.'

Of course they do, we all do. One smile from that cheeky face and we're all smitten!

It sounds as if your appointment went really well.

You're right, she is incredible. As is her Mummy.

Picoloangel · 07/06/2023 21:02

Oh my goodness she’s absolutely beautiful. What a smile! I am so glad that you have some answers though I appreciate that there will still be some clarification and information to come in the months ahead. It all sounds like a positive outcome and hope it’s given you some peace of mind. Wishing you well and thank you for updating when I’m sure you’ve had so much on your mind.

EasyPeelersAreNotSatsumas · 07/06/2023 21:14

What an absolute sweetheart 😊

ThisWomansWorkNeverEnds · 07/06/2023 21:17

Oh she is gorgeous even with a bandage on her head! Sounds positive OP, although know you must be under a lot of stress. X

SirChenjins · 07/06/2023 21:29

What a gorgeous little girl you have - a photo of her smiling face makes my day! I know you’re going through a hugely worrying and uncertain time, hopefully the coming weeks and months will give you the answers you need and put your mind at ease. Sending you lots of positive thoughts and very best wishes 💐

notapizzaeater · 07/06/2023 21:36

She is absolutely adorable x

strawberriesarenot · 07/06/2023 22:55

Adorable little girl, she looked a picture of springtime in her green dress on the previous thread. You have done so well to have her be so calm and relaxed and happy, no wonder they all loved her. The news sounds exhausting for you but good for her- no urgency, no brain damage. One day at a time.

HoneybeesAndBluebells · 08/06/2023 07:43

Aww love her that's reassuring the seizures aren't harmful.
I hope you get some answers soon, but for now at least they are taking it seriously. x

YoucancallmeKAREN · 08/06/2023 08:36

Glad to read your update. try and ask for help from those around you, i know you won't leave the baby but please ask someone to batch cook for you or do the ironing anything to help. I am sure family and friends would happily help. Flowers

Geneticsbunny · 08/06/2023 09:08

Can someone link to the previous thread please?

eastview · 08/06/2023 09:45

@Geneticsbunny www.mumsnet.com/talk/childrens_health/4677896-mass-on-brain-4-month-old-baby?page=36&reply=126553921

Thank you so much everyone. We are home now. Was so nice to sleep in my own bed last night, those hospital chairs are not the one. Daddy and baby gone back to sleep. We all need a nap today I think!

Thank you so much for all of the lovely comments and well wishes. Going to try to get hold of our local consultant this week to get the ball rolling with the dietician.

X

OP posts:
Geneticsbunny · 08/06/2023 10:15

@eastview thanks. My son was epileptic from birth and was diagnosed with tuberous sclerosis at 3 months old so I understand what you are going through. It took about 6 months to get the seizures under control.

He is now 14 and off meds and seizure free. He has moderate learning disabilities and will never live independently without support but he is a lovely young man and is doing so much better than we had thought he would when he was a baby. I found pre school years the hardest because we didn't know how severely he would be impacted.

It gets easier and there will always be very hard bits but the pride you feel when they achieve something for the first time by themselves is incomparable.

Your daughter has a beautiful smile. I hope you get real joy from her.

rainbowstardrops · 08/06/2023 10:16

Oh what a gorgeous girl she is! I read your last thread, so really pleased that you've started this new one so that we can still follow your journey Flowers

ZeldaWillTellYourFortune · 08/06/2023 10:43

Thanks for the new thread and update.

She has such an amazing personality. Clearly a very loved child. You and her father are doing a great job!

dessicatedblackbird · 08/06/2023 11:00

She is so gorgeous, the photos you take of her are so good. Glad it all went as well as could be.

gogohmm · 08/06/2023 11:36

It's very worrying I know but the doctors have lots of combinations to try as anti seizure meds, it's a bit of an art to getting the right balance so hold in there.

Dsd has severe epilepsy so my dp knows far more than me but he is so relaxed about it (I'm still worried when I have her solo!)

Many years on, when she's a young adult there's a specialist epilepsy college to help them with their transition to adulthood, dsd went for 3 years

Always4Brenner · 08/06/2023 14:43

Beautiful smile such a cutie all the best to both of you. HuGs 🤗

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