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.

I can't be far from you as the Grange is my nearest hospital. It's terrible there. Terrible.

Good luck today op. For you and your beautiful daughter

Wishing you and your lovely little girl all the very best of luck today.

Best of luck OP. I remember that feeling of not being able to bear it so well, from when my DD1 was really ill and I was waiting for the diagnosis. When it came - leukaemia - it was almost a relief as at least the uncertainty had gone and I knew they would take us seriously.

23 years later: she’s 30 and still the most wonderful child 💕

Never give up OP.

Sending you all the very best of luck for today for your beautiful precious daughter. I am thinking of you.

Oh she is such a gorgeous little munchkin.

I'm holding you all in my thoughts and prayers.

Wishing you the best of luck. You’re in my thoughts.

Thinking of you all.

Good luck today. She's abolutely gorgeous.

Ask about Ronald McDonald house. My friends were able to stay there for weeks last year when their daughter was in (also neuro) and they only live 45 in Swansea, so you might be OK. They'll want you close at hand with such a little one. I'm under the neurology team in Cardiff and everyone I've seen so far has been excellent.

What a beautiful little girl. Will be thinking about you all today and look forward to the positive news that all will be well. Everything crossed for you.

Thinking of you all today x

Thinking of you all. Hope you get the results quickly.

Your little girl is beautiful and I hope everything goes smoothly for you all

Sending you loads of love and hugs today. I will be thinking of you and your lovely little girl. Just keep pushing for answers. Hopefully the NHS will deliver but do not hesitate to go private if you’re able to. All the very best xx

She's so gorgeous OP. Hope everything goes well today xx

Sorry you are going through this, hopefully it's benign and they can get to the bottom of it quickly/start treatment if necessary.
She is a beautiful little happy thing. ❤️

🌸

Thinking of you OP ❤️ I am local to you and also had a frustrating experience with the Grange recently but the heath is a fantastic hospital. You and baby girl will be in the best hands possible.

Everything crossed for you and your wonderful girl - I don't know anything about these issues in babies but it's great to see there are several stories here confirming that it doesn't have to be anything serious so I hope you can take comfort in that. Hoping you get much better treatment all round from here on. 🌻

Thinking of you and wishing your beautiful baby girl all the luck possible!

Aww. I'm sure it's not anything really awful OP. Praying for you and your LO. Such a beauty, please keep us in the loop. xx

Wishing you the absolute best for today. Your wee girl is just the bee's knees.

Thinking of you today op. Hope it all goes smoothly.

I have just seen your thread today, op and want to wish you and your little girl all the very best for today 💜

Your daughter is beautiful. I’m so sorry for what you are going through. Thinking of your family today.xxx

OP I can not even begin to contemplate this. I am so so sorry.

But the 'ring again in ten days' I can comment on.

I once had to get care for my son and was being given run around. Nothing at all like your situation, but very difficult none the less.

I reached the end of my tether about three months in. I went to the emergency room and basically told them I was not leaving until my baby was seen properly and there was a plan in place and I saw a consultant who would take responsibility for my baby's care. It was horrible. To begin with, the fobbing off happened again. I felt crazy. Like an absolute crazed person. Then when they realised that I really was not going to leave... that if needed I would sleep in the waiting room, they put a plan in place. In the end I was put on a ward and a number of tests were done. A consultant took charge and I only left when I had a number of out patient consultations booked in. I know some people will frown on this, but in your shoes I would do this again. We are the advocates for our children. If people will not listen when we speak on their behalf, we need to shout. And if shouting does not work, we need to scream. It went against every social norm I had ever internalised to do this. But I had a very sick baby who was 'failure to thrive', constant green diarrhoea, covered in infected sores and screaming his head off all the time in discomfort. I got him sorted. I know its not the same situation - but if I were you I d do it again in a heart beat.