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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:
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Fireandflight · 28/12/2022 16:43

That's brilliant news and I hope you enjoyed Christmas with your darling daughter.

Original poster
eastview · 03/01/2023 09:39

Happy new year everyone ❤️ thank you so much for all of your well wishes! I have been having somewhat of an emotional breakdown over the past few days. Now things have settled a bit I'm starting to realise how stressful it's all been and I'm exhausted and teary. I had a letter come through with the report which basically repeated everything that they said at our appointment but reading "we can't completely rule out a tumour without a repeat MRI in 3 months" really upset me. I know they said it's much less likely but still not nice to read. I'm also due to go back to work soon which I'm so anxious about. Because her condition / seizures are going to be lifelong someone said she might be eligible for DLA which would take the pressure off, has anyone else applied for this before? I've filled in the forms but not sure what to expect really as she's still under investigation. It's all so stressful but luckily she's still her happy crazy self 🥰

OP posts:
Always4Brenner · 03/01/2023 09:45

Aw bless her happy new year to you yes go for pip it will help with emergency taxis things like that.

MerryChristmasToYou · 03/01/2023 09:47

Happy New Year @eastview .
The letter is to cover them; in other words, they are pretty sure it isn't a tumour, but they can't completely rule it out.

niugboo · 03/01/2023 09:49

DLA is unlikely yet. You have to be able to demonstrate that her care needs are above those of a normal 6 month old which from what you’ve said they definitely aren’t. And there’s no reason why she can’t go to nursery etc.

has she been seen by health visitor to check meeting milestones etc? Holding her up as she should have been? Normal muscle tone etc.

Benjispruce4 · 03/01/2023 10:03

OP that sounds like a completely natural reaction . Written words seem harsher than a friendly, reassuring conversation with the consultant. Remind yourself that she is in the best possible hands and most importantly you have done the very best you can for her. It’s a great sign that she has not deteriorated in any way. Set yourself little goals and things to aim for over the next few weeks and hopefully , the next few months will fly by.

Benjispruce4 · 03/01/2023 10:04

That 3 month scan is a little safety net.

ZeldaWillTellYourFortune · 03/01/2023 10:22

@eastview

I've been wondering how your Christmas week was going!

The letter is likely a formality, though understandably worrying from your POV.

Can you access any CBT or counseling for yourself? You've been through so much.

Would work allow you to return part time for a week or two?

Original poster
eastview · 03/01/2023 10:24

Hey @niugboo she can't go to nursery she's still having upto 100 seizures a day and takes oral medication 3X daily. She wakes up multiple times at night as she also has them when she sleeps. She's the happiest little girl and they don't bother her I think mainly because she's always had them but now we know they're seizures and not linked to reflux we can't just leave her especially as she's starting to move about and eat etc. unfortunately we don't know how it will affect her as she develops but the consultant said it will more than likely need to be controlled for life as it's a developmental issue with her brain

OP posts:
Benjispruce4 · 03/01/2023 10:34

What is the medication doing? Has it reduced the seizures? Is there a plan after 3 months?

Original poster
eastview · 03/01/2023 10:46

Hey @Benjispruce4 the medication has slightly improved but the consultant would like them to completely stop. I was advised that if they hadn't stopped in 3 weeks then they'd review which is now (her medication has already been increased 3 times) so I'm just waiting for a call back about that (everything takes an age this time of year). They did say it takes quite a long time to get the right medication/dosage so take a bit of playing around. She has an appointment next month to review her and then another MRI under GA in March to check the mass hasn't grown. She's started eating solids now and I have major anxiety as I'm convinced she's going to choke. The consultant said not to hold off because of this just make sure to keep a close eye. She seems to do it more when she's drinking milk which is why it was initially thought to be reflux related however the consultants don't believe me that she does it more when she's drinking 🥴 although she 100% does.

OP posts:
niugboo · 03/01/2023 11:18

eastview · 03/01/2023 10:24

Hey @niugboo she can't go to nursery she's still having upto 100 seizures a day and takes oral medication 3X daily. She wakes up multiple times at night as she also has them when she sleeps. She's the happiest little girl and they don't bother her I think mainly because she's always had them but now we know they're seizures and not linked to reflux we can't just leave her especially as she's starting to move about and eat etc. unfortunately we don't know how it will affect her as she develops but the consultant said it will more than likely need to be controlled for life as it's a developmental issue with her brain

If you can get the consultant to confirm that she cannot go to nursery then DLA is definitely an option, and will likely come with minimum middle rate which would allow you to claim carers as well.

niugboo · 03/01/2023 11:19

The condition needs to be something that’s likely to go on for over 6 months impact wise, so if It’s a dosing issue you wouldn't qualify.

Benjispruce4 · 03/01/2023 11:20

Good, it sounds like you’re being safely monitored and checked. I think in the current circumstances you could be signed off work as she needs full time care until meds are at the right level.

Original poster
eastview · 03/01/2023 12:00

I was originally going back full time but I've already cut that back to part time. I will just have to see how we get on really. At the end of the day she comes first but it's all such a worry especially as we don't know what will happen in the future. Luckily my work have been amazing and very flexible which I'm so thankful for. Hopefully 2023 is a better year for us 🙏 I feel terrible about my anxiety regarding food as she wants it so bad I'm just so nervous of choking with BLW. Here's her with some watermelon and banana this morning. I took it off her when she started taking bites of it because I was so scared. Maybe I need to take a first aid course to ease my anxiety a bit

Mass on brain 4 month old baby
Mass on brain 4 month old baby
OP posts:
Benjispruce4 · 03/01/2023 12:14

Keep everything chopped very small. Don’t give her the whole slice. Don’t give her more than a small piece at a time. I’m a first aider at school. Whole grapes can be an issue.

Somuchgoo · 03/01/2023 12:14

eastview · 03/01/2023 09:39

Happy new year everyone ❤️ thank you so much for all of your well wishes! I have been having somewhat of an emotional breakdown over the past few days. Now things have settled a bit I'm starting to realise how stressful it's all been and I'm exhausted and teary. I had a letter come through with the report which basically repeated everything that they said at our appointment but reading "we can't completely rule out a tumour without a repeat MRI in 3 months" really upset me. I know they said it's much less likely but still not nice to read. I'm also due to go back to work soon which I'm so anxious about. Because her condition / seizures are going to be lifelong someone said she might be eligible for DLA which would take the pressure off, has anyone else applied for this before? I've filled in the forms but not sure what to expect really as she's still under investigation. It's all so stressful but luckily she's still her happy crazy self 🥰

We've applied and are waiting for an answer. It sounds to me like you'll be eligible, but if they say no, ask for a mandatory reconsideration and then go to tribunal if necessary. The vast majority win at tribunal and you'd get the back-money.

The brain tumour charity give advice on claiming etc. Obviously this is for kids (and she's) with tumours, but they may be same to help your, in your rather unusual situation. Or maybe talk to an epilepsy charity.

I expect you'd get it for the seizures etc, but not for overnight waking, as that's normal for her age.

Best of luck

Coxspurplepippin · 03/01/2023 12:18

She's enjoying that banana!

The first aid course is a great idea - every parent should do one.

OldFan · 03/01/2023 12:43

Because her condition / seizures are going to be lifelong someone said she might be eligible for DLA

Her seizures don't seem to impact her ability to function appropriately for her age at the moment so she'd be unlikely to get DLA for it. You wouldn't leave her alone at this age anyway, so the level of supervision is normal for that age (although obviously you would be more concerned.)

As your consultant says, hopefully once she's on the right meds she won't have these seizures at all, or they will be vastly reduced. So she would be even less eligible for DLA then. (Which is great as obviously not having anything impair her functioning in life is the best outcome.)

OldFan · 03/01/2023 12:46

DLA doesn't go on the condition the person has, but on how their condition currently impacts their daily life and the amount of help they need. It also makes no difference if the person will have the condition for life, as it's reviewed every few years to see if how their condition effects them has changed.

sexnotgenders · 03/01/2023 13:00

It definitely looks like she's loving that food OP, which is great. I completely understand your anxiety, so a first aid course is a great idea and hopefully that'll help you to feel more secure with her eating. One thing I did wonder about is whether she's sitting upright enough as she appears to be slouching in the photos (could be the angle taken though). Baby should be sitting upright, ideally without too much support. How is her neck control?

OldFan · 03/01/2023 13:05

@sexnotgenders She's only 5 months. It's 6-7 months on average before they can sit upright even with support. She maybe looks older than she is.

OldFan · 03/01/2023 13:07

I think in the pic on the left of her with the food, she's bending forward a bit to get more of a purchase to munch on it.

oakleaffy · 03/01/2023 13:26

@eastview Re choking first aid, look online and see what to do in the case of choking in a baby ( Every parent should do this, Ideally)

You Tube have good videos put up by a Children’s hospital and British Red Cross.

As others have mentioned, whole grapes are particularly risky because of their shape .

Being prepared and knowing what to do in advance re a possible choke will make you feel more in control.