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.

Pleased to hear she came through the anaesthetic well and they dont see any need to operate yet.

That's a very positive update Op. x

Oh what positive news op! I hope you all get some rest xx

That’s good news OP. Will be thinking of you tomorrow x

I'm here still thinking of you. Good luck for tomorrow.

💐💐💐💐💐

Wishing you all the luck in the world for your baby tomorrow ❤

I’m relieved that you had reassuring news. Good luck for future appointments x

How are you doing @eastview x

Good luck tomorrow

Thank you so much for your messages everyone. The neurologist said she was meeting with the radiologist to discuss the results on Friday (just gone) and they promised me that they would call if urgent and I've had no call so I'm hoping that that's a good sign. The MDT meeting is tomorrow but I'm unsure if I'll hear anything as I've had an appointment come through for the 8th with the neurologist. I'll be on pins all day tomorrow but kind of hoping I won't get a call so it means it's not something urgent. I've been surprisingly ok. I don't think the medication is really doing anything for the seizures tho. Actually I'm not convinced that they're seizures at all. She was doing tummy time yesterday and started having a "seizure" then literally went from being in a push up position from lying flat all while having the episode. That would be like me standing up from sitting down all while having a seizure. It just doesn't make sense. She continues to drink her milk, squeeze my hand and even sit up while she does it. That plus the medication not doing anything despite being increased 3 times makes me think that there's something else going on. Luckily she's still not bothered by anything and is as happy as ever. Here's a few pics from the last few days. Lots of love to everyone. Xx

Aw cute cute, not that I have a kid but where do you get the lovely outfits?

I hope it all gets sorted out soon OP xx

I would stop her drinking if you think she’s having an episode - just for reassurance.

She’s a lovely baby and very smiley. Obviously not phased by anything going on. Best of luck for this week x

@OldFan most of her outfits are from dollywears 🙂 @ZandathePanda she's had these episodes since she was born sometimes over 100 times a day. She's always continued to drink her bottle during (sucks and swallows still) they last around 20 seconds. She's probably done it thousands of times while drinking and never once choked up or anything. Of course I didn't realise what it was before but It's very strange. Even the nurse was baffled when she saw her drinking while doing it at the hospital x

It doesn't sound like whatever it is is causing her distress.

I hope it turns out to be something minor xx

She is obviously very aware of her surroundings and still high functioning during whatever is happening, which is reassuring for you. You sound such a lovely mum x

Such a sweetie!!

What an adorable, expressive, intelligent-looking little girl! It must be such a joy to you. She really looks like she relishes life, and like a very secure and beloved baby.

Have been thinking about you often and hoping for the best.

She does look to be an incredibly sweet smiley Girl -
A dear little person.

Oh she's scrummy!

Good luck today x

Oh she is just gorgeous! Hoping for the best news for her xxx

We had a close family member experience a cancer related medical emergency. With hindsight what we experienced was that the communication is often terrible - so you have long anxious waits where you think you have been forgotten about or lost in the system. No sense of urgency from anyone involved.

When the 'real' emergency happened, however, the care was exemplary. The moment the worrying results were reviewed, the phone call was immediate and everything was taken care of, no stone left unturned with round the clock care and investigations.

In short, in our experience when things were not 'urgent', they didn't tell us this, we felt forgotten. There was no reassurance. The NHS provides wonderful care but the communication can be awful which makes it such a frightening experience for the family. It is only with hindsight we saw that we hadn't been forgotten.

I just wanted to give some reassurance that if something awful is found you will be told very quickly, so even though it doesn't feel like it - no news can be good news.

Sending massive hugs, you are walking through the storm and I really hope it passes soon and you have good news.

Your daughter is adorable, what lovely photos.
Hope today goes well, and you receive no phone calls or if you do it’s to reassure you that it’s nothing nasty.🌸

She's such a cutie, OP. Hope today goes well.

Hugs gorgeous little girl and a fabulous mum as as well, thinking of you.