Mass on brain 4 month old baby

[eastview]

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.

Hey @sexnotgenders she tilts to one side due to her brain we think. She's always done it and also one eye is bigger than the other. She has a hand preference also (she usually prefers to use her left hand) which her consultant said is not normal for a baby her age so is likely because of the mass and she may need physical therapy as she gets older but not to delay weaning because of this as it's likely she will always do it unfortunately. Her head control is usually pretty good but obviously not when she's having a seizure which is why my anxiety is so increased when she's eating x

Thank you everyone I'll definitely look up some choking first aid 🙏 hopefully we can get her seizures under control with medication and she can live a relatively normal life and go to nursery etc as id love that for her. I've put off going to play groups because when I took her (in the middle of hospital visits and waiting for results) I broke down crying during. I just kept looking at the other babies and parents and wishing that we were them. She was having seizures throughout and I felt like I was ruining it for everyone else because I was no fun and she couldn't do the things the other children were doing (she could for short periods then we had to stop as she had seizures). I know it's terrible to feel that way but I did then also felt guilty about ruining it and also not going again. So I'd love her to have some little friends. Luckily the seizures last seconds and appear to be focal so isn't completely blacked out or anything which they said should cause less permanent damage to her brain. I just pray that one day this will all be a distant memory

She shouldn’t be BLW until she can sit independently. You’ve introduced food earlier than you should, there are key milestones for BLW and one of them is being able to sit up.

I was advised all fine by her consultant 🙂 Like I said she will tilt due to the mass on her brain which she will likely always have

Also she can sit up, her head just tilts to one side🙂 she never falls over or face plants while sat up even while having seizures so all good 👍

She looks great hugs lovely photos.

@eastview

Dear eastview, I'm not qualified to write about weaning but just wanted to say that your baby has immense expression, charisma and personality, amazingly so for such a young child. (We are not super child centric in my family but I even showed my sister this thread at Christmas and she exclaimed aloud at your child's darling grins.)

Those qualities are rare and priceless, at any age, and for making her way through life, and can offset difficulties in other areas. Add in her loving and attentive parents and she has won the lottery! You need not feel that she is disadvantaged compared to the other babies at nursery. She's headed for a great life.

@Always4Brenner thank you ❤️

@ZeldaWillTellYourFortune thank you so much that brought a tear to my eye. She is such a lovely little girl and I know I'm so lucky to have her it's just been such a journey. The days are short but the weeks are long sometimes. I just need to keep reminding myself that I am doing all I can do and the best I can and she's happy and that has to count for something x

You mentioned that you found playgroups difficult. You could possibly ask your health visitor / specialist schools etc as there are sometimes inclusive playgroups / stay and play sessions etc you could go to with other children who might have epilepsy or other medical conditions.

Like I said she will tilt due to the mass on her brain which she will likely always have

IDK if this is what you meant @eastview but I don't think she will always tilt. The size of the mass is small compared to the size of her head and sooner or later I think she'll adjust to the size of it if she hasn't already and hold her head normally. Not that I know anything about it. 😀

@OldFan it's hard to know at the moment really how it will be in the future but her consultant said that it's on the part of her brain that controls coordination and balance which is why they'd offer her physical therapy as she grows (if needed ofc) and they also noted and noticed her head tilt, hand preference and eye size difference. Because they believe it to be the way her brain has grown (rather than a growth that can be removed) they do believe that she will need to be medicated/reviewed for life but of course it's hard for them to say definitively at the moment. They aren't even sure if the seizures are due to the "mass" as they said that epilepsy doesn't usually come from that part of the brain so we definitely still have a journey. I really do hope you're right and she adjusts to it. Luckily babies adapt well and she will never know any difference I suppose, she's done it since the day she was born so it's normal to her

I take Lamotrigine for life which is usually used as an anti seizure med, but I have it for my bipolar. It's no trouble to be on and take at all.

I hope she has a fairly smooth ride with it all and please keep us updated xx

She's such a smiley little cutie. I hope you all had a lovely Christmas and all the best for 2023

We did a baby first aid course and I'd massively recommend it to anyone. It didn't just show me what to do, it gave me confidence in making decisions about medical things for my kids so I worried less if I was overreacting. I hope all goes well for all of you navigating the process and she's lucky to have you on her team 💕

Look on Amazon at their Choking Rescue Device. I have watched numerous video's where this device has been used on children. It will give you peace of mind if your DD does choke and you are unable to dislodge the choking hazard.

Definitely recommend a baby first aid course but in the meantime look at solid starts and their recommendations on how to prep food etc. Also look at videos showing the difference between gagging and choking, I found them really reassuring! Taking bites is a good thing, she’ll learn to chew and to move the food around her mouth and to swallow. Smaller pieces aren’t less of a choking hazard even though they can make us feel better! If anything they can be riskier, mashed is better than chopped up small as the biggest risk are things the exact size of their airway (about the width of a drinking straw) so they can go in and block the top but can’t be coughed away

She is so, so gorgeous !!!!!! I haven’t read the updates but did see a couple of posts saying things like ‘whole grapes can be a problem’ - I would say, please don’t give grapes to her, they are the most toxic fruit full of pesticides anyway ! And if you do, quarter them lengthways.

also, I would 100% make booking a first aid course a priority. It’s critical.

Grapes are a choke hazard but it's a myth that pesticides are a problem, as the amount of them on food is miniscule and safe.

Just read your update and glad that you have the consultant to monitor and advise, wishing you and your gorgeous baby girl all the very best

Hi everyone I hope you're all well. I thought I'd give everyone a little update as everyone's been so kind on here ❤️ my little girl had her repeat MRI last week and there's no change, no growth so definitely looks like it's just her brain not a tumour! They managed to find the mri I had when I was pregnant and they think they can see it there too but the imaging is poor so they can't really measure it. I'm so relieved and I feel like although she's still having seizures I can move on and just focus on making that right. They will do another mri probably at the end of the year just to keep an eye but I'm a lot less worried about that now. I was due to go back to work next week but I've just extended my maternity leave until May so we can actually enjoy some time together and maybe even go on a little holiday to celebrate. We definitely deserve it ❤️🥰

Oh that’s such good news!! You must be so relieved - and how lovely that you get to spend a bit more time off with her. Enjoy every moment! 😊

What fantastic news. Now you can enjoy your next few months of leave with a happy heart.

Wonderful update, thank goodness.

Delighted for you all.

Every good wish for her and your future.

❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🤗🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳😍😍😍😍😍😍😍😍thrilled thrilled oh that’s fabulous news made my day thank you.

Wishing your lovely babe the best of health for the feature.

She is gorgeous.❤