Optic pathway glioma - anyone out there ?

[Pitterpatterpenguin]

Hi

My child has been diagnosed with an optic pathway glioma in the chiasm and I’m struggling to find any similar parents/experiences at present. If anyone has any experience of this and would like to chat please let me know.

Hi there - I'm sorry to hear about your child's diagnosis. My son had a different tumour in the chiasm, a craniopharyngioma. I don't know whether the treatment is similar. I would suggest you take a look on Facebook for support groups, you're likely to find other parents on there.
I hope you're doing ok.

Thank you for your reply @BlackSwan - yes I’ve dipped my toe into Facebook groups but my son’s particular subset is fairly rare and to be honest I’ve found the fb groups a bit overwhelming. I think in time they will be easier and helpful to us. I wish you and your son well.

@Pitterpatterpenguin does he have Nf1? More than a third of those with NF1 have an OPG. How old is he?

An OPG doesn't necessary require treatment unless there is risk for vision.

Hi @Kaiken unfortunately no we don’t believe he does - we’ve got a brilliant oncology team and treatment plan in place I was just seeing if any other parents out there. Thank you for your comment.

You should be glad he doesn't have nf1. There is a patient community called inspire and OPG is discussed in these communities. www.inspire.com/search/communities/?query=optic%20pathway%20glioma&p=1&sec=comm&g=&r=20000&s=false Even if he doesn't have Nf1, have a look on the NF1 board as a lot of parents post about their experience .

An OPG is a scary diagnosis, but they are mostly low grade and the treatment options (chemo) have a high success rate.
Check Inspire.com , plenty of parents there, even if mostly US based.
Best wishes

Apologies I didn’t phrase that well, I appreciate NF1 is a lifelong condition with many other facets however sporadic OPGs tend to have a more aggressive pattern is what I was implying and were still awaiting confirmation as he grows. Thank you for the links I’ll check it out.

I hope you find the right support for you.

How did you come to the diagnosis ?

We’re in the same situation exactly. Have messaged you xx

There's a great Facebook page in case you're interested. My DS was diagnosed with (non NF1) OPG at 5. He subsequently had chemo and is now a strapping 13 year old

Hi @familyissues12345

thank you so so much for sharing. Our son is 3 now and finishes his 18months of chemo in December. As much as I hate chemo I’m frightened about it finishing. I don’t know if I’m being overly negative as a protection mechanism but I’m worried about not being on it and it growing again when we stop.

thank you again for sharing about your amazing son. Unfortunately I don’t have Facebook so don’t know any other people in this situation :(