Will neuro nurse at GOSH think we're precious?

[minxthemanx]

I have to speak to DS1's neuro liasion nurse tomorrow, to feed back how he's doing following an occipital nerve injection a couple of weeks ago. Quick summary - he had a ruptured brain aneurysm last year, aged 9, and since then has had bad headaches most days. The reason I feel a bit awkward about chatting to them tomorrow is that he has now had 3 different types of neuro medication; Gabapentin, propanalol and currently topiramate, plus an injection of steroid into the occipital nerve, and he STILL complains of headaches most days. He doesn't think there's been any improvement.

I'm a bit at my wits end, and wonder what on earth they must think of us. I'm embarrassed to tell them that this, as well, hasn't worked - I've got visions of them thinking I've got Munchhausers by proxy or something! Believe me, I know from pretty awful experience what a wonderful place it is and the quality of the staff - but I'm quite nervous about admitting failure yet again. Can anyone reassure me?

[beautifulgirls]

No, they will not judge you for telling them honestly how things are going. You will not be the first parent of a child who has not responded as everyone would hope to treatment. Better to be honest about things so they can make plans for what to do next. Don't feel bad, this isn't your fault, you didn't want things to be like this for your DS. I hope they can offer something that does help him from here.

[minxthemanx]

Thanks, i know that I'm being daft as have a long history with the neuro team. But just feel that yet again I'll be telling them the treatment hasn't worked.

[Finallygotaroundtoit]

Let DS tell them.

I know what you mean about worrying what the team think of you but DS is the patient. Let him talk and only respond when questions are asked directly to you.

[funnyperson]

Ultimately its best to tell them that your DS thinks the treatment has made no difference. Keep a daily diary. They might have special pain scales which DS could fill in daily. These are useful as they may show weekly patterns related to daily activities.
You aren't there to make gosh feel good by being polite, you are there to help your DS.
If the treatment hasn't worked, it hasn't worked. None of those medicines are cures.

[funnyperson]

Never be so overawed by image that you can't ask for the best for your child.What would you think if some 3rd world hospital had given 3 treatments which did not work? What would you do? Do that.

[ChippingInLovesAutumn]

I feel sorry for you that you feel this way.

It is not a 'failure' on your (or your sons part) that he hasn't responded to medication.

These things....

Failure that medication hasn't worked
Embarrassed
Worried what they'll think of you


... make me feel like you need to speak to someone. It's really not a normal/healthy way to feel :(

[minxthemanx]

Chipping I hear what you're saying, but I think I'm just frustrated that 18 months down the line, and after so many different types of medication, DS is still struggling with headaches. I probably didn't voice it well on my post, but I was SO hoping that the latest treatment would work, and that I'd be able to ring GOSH and say 'yay'! I'm disappointed that I'll have to have another "that didn't work either, what shall we try this time" conversation.
There are so many really, really sick children there with the most awful conditions, and we go bouncing in on our visits with DS looking as right as rain (tho obviously he's not, but it's not visible.) Sorry, it's my disappointment and frustration that led me to posting; rather than feeling we've failed, I meant the treatment hasn't worked.
And I appreciate your comments about seeing somebody, but that's not necessary. Believe me, after dealing with a DS on critical list in Intensive Care for 3 days last year, I needed PSTD counselling, and had it gratefully. I'm actually pretty robust and strong, but like I said, disappointed and sad for DS that latest treatment hasn't worked.

[funnyperson]

My dad is on itu right now. I think I need pstd counselling. Its so terrible to see a loved one ill. I have all different sorts of feelings :sadness, horror, and also the need to be strong enough to be articulate enough to ask for the best. I know what you mean about feeling guilty for mentioning that things arent better. But I sill think its important to continue to give accurate feedback to the team.