Vasculitis UK
5,447 members5,006 posts

I did contact GOSH

Yes they asked me to get her checked out , took ECG with me , went local GP as quite clued up as opposed to A& E where you don't know Adam . She was' nt sure about results on the Graph and my daughter today has a very low pulse rate ? And heart beat per min lower then average 7 yr old , she still is short of breath , but nothing that feels me with fear, as yet . An hour ago she said her neck hurts and to be fair there is a all swelling , not a lump as such just a mass of soft tissue below the top whet head joins neck but not near lymph gland ( know these well from when she had glandular fever) . Is it normal to ave so many symptoms and daily, hourly changes ? Dr said MRI scan week after next , do you normally have this or is it because of vision , headache , problems ?

5 Replies

did the gp check her over? I have no medical training and cannot answer your questions, much as I would like to. I'm glad you took her to your gp.




I suspect the MRI scan is just part of the thorough check on all aspects of her health, a part of the investigation into the cause of all her symptoms. I also think that the GP would have recommended hospital admission immediately, had he considered her an emergency.

I don't know about the normality of her frequently changing symptoms, perhaps someone else on here has come across this? I just hope you get some results soon from the blood tests that she had at the hospital, that should clear up the puzzle and tell you exactly what is wrong. In the meantime, keep a good eye on her and don't hesitate to ring either your GP or the hospital to report any change in her symptoms. Would recommend keeping a diary, too.

Good luck to you both, let us know how it goes!



Hi, motherof4, hope all is well. Just to add my thoughts on the rapid changes in your daughter's symptoms: we certainly experienced very rapid onset of symptoms when my daughter was young. She could go from running around to immobile in two hours. Our rule of thumb to this day is that her swellings last for 72 hours (3days) and rarely subside quicker than that. This may be unique to us, but we've found this generally to be true. I know that neck swellings need to be monitored, keep watching her breathing. Thinking of you both, Veronica


I think it can depend on the type of disease and the level of activity as to how many symptoms you might see and how frequently they may change. Certainly when I was ill I would have different problems from one day to the next and until I was properly diagnosed I just didn't have a clue what was going on.

But as Ayla says, don't be afraid to keep going back to your GP or hospital if something happens that has you worried. I think you've already said you keep a diary, and like Ayla, I found that really useful too.

Regarding the MRI, it can depend on exactly what they're scanning and/or looking for. If it's a head scan then I suspect they'll be checking the back of the eyes for inflammation and also to see if there's any disease activity in the brain.

The MRI for the head can be a bit claustrophobic and surprisingly noisy. I had one, and whilst it's not the worst test I've had, I imagine it could be a bit scary for a seven year old. If I remember correctly you have to try to keep your head and eyes quite still. But hopefully GOSH will be well aware of these sort of concerns with children and have procedures in place to help make it as stress free as possible for both you your daughter.

Do let us know how you get on.

All the best,



Yes they said could she be awake rather then going under. They said she could watch a DVD so must be a bit different form the adults? I had on for my back a few weeks ago , how would you be able to watch a film? I ve said we will give it ago but only on the day will we know.... Plus they are booking her in for five other test ?


You may also like...