Optic neuritis in 6 year old

[LilacLeaf]

Hi everyone, my 6 year old dd has been just diagnosed with optic neuritis after having MRI of eyes. Sometimes she has headache and a migrating pain in her legs and arms as well as numbness. I called our surgery and they told me to go to an optician. I went to a local optician and they booked us for an eye vision test. It is just feels so slow. Unfortunately, I googled and can't stop worrying and crying when no-one sees me. I'm worried that it looks like MS but it can be other serious things. And I feel very lonely as it looks like it is very rare when young children are diagnosed with the optic neuritis. Sorry if my message looks chaotic.

Hi OP
I think your child needs to be seen in a hospital eye clinic, not an opticians. Who told you about the diagnosis after the MRI, presumably that was done in a hospital? I would have expected your urgent referral to have been made from that within the hospital setting but if not I think you need to be proactive

Hi @LilacLeaf i agree with @COYU - call the mri dept (unless you have the name of the specialist who requested the MRI) and get the name of the secretary for the consultant you are under. Call them about follow-up and the next stages. Don’t go back to a normal opticians. She needs continuation of care and you will need to be her advocate. I hope you get answers soon but remember, the squeaky wheel gets the most oil.

Hi, thank you so much for your replies. I think you are both right that I need to be proactive.
And we are planning to go tomorrow to eye hospital.
The reason of why there was no follow-up after the MRI is that my daughter had the MRI when she was abroad visiting her grandfather and also getting treatment for allergy (due to long waiting times here). She started having these symptoms like double vision, etc. And my parents took her to neurologist over there who requested the MRI. On top of that before having the MRI of the spine and eyes she has had numerous blood tests and scans. The specialist who did the MRI and the neurologist who was consulting us abroad said we needed further urgent diagnostics and treatment, as she lives in England. I'm just so worried that they won't deal with that quickly. I've already talked about that with the local surgery my daughter is registered with and they are taking it slowly (waiting to see a GP, after GP needs to refer us to a pediatrician and after referral to a hospital, neurology department).
At that time we didn't have the MRI result.

As soon as we got the MRI result I went to an optician (the local aurgery advised us saying that GPs can't refer to Eye hospital but only opticians). They booked for us an appointment for eye vision test, only after that they told us they could refer us. They also tried to persuade us that we have to go and see a GP.

Bless you @LilacLeaf - I’m so sorry it’s been such a slow process! Do you have an appointment with the GP yet? I’m so sorry, it must be so stressful x

Thank you so much Songbird74 for your support 🙏. We decided to go to A&E of eye clinique in London. Hopefully, somebody will contact us next week. X