2/09/13
Well, apart from night sweats and the odd incident of numb tongue I thought things were improving for Dan. He has managed to wean off of the steroids and compared to previous years doing well.
Over the last 3 months however, Dan has twice had what we believe to be some sort of nocturnal seizure. He remained semi-conscious (scary) and Hilary wanted to wait to see if this was a one off thing before this was taken further.
Last night, well, early this morning, Dan had a much more drastic seizure. As before his neck kept jerking to the right, he was paralised and had blurry vision. This time he felt it was affecting his breathing and he tried to shout for help about 8 times but the sound would not come out. As soon as it was over he felt sick.
We have just got back from the GP who has made an urgent referral to a neurologist as he believes this is Focal (partial) Frontal Lobe Epilepsy. Dan is really upset and still in shock after the incident. The GP believes Vasculitis could be the culprit.
This is now the third event and we have realized that each one was preceded by a headache. He has also been having the numb tongue again as well. Dan is now saying he is scared to sleep as he cannot cope with this happening again. I hope the neurologist will be able to do something.
Hi Elaine,
ReplyDeleteI came across your blog while searching on Urticarial Vasculitis. I'm 23 this year and is a victim myself. The report was only out this week and the dermatologist has confirmed that I'm suffering from Urticarial Vasculitis. I was really devastated and cried for a couple of days. The rash was on my thighs, elbows and hands. The itch was unbearable and my body felt like it was burning on the inside. My joints are also beginning to feel pain and I would get really nauseous when I woke up. Nights are getting harder to sleep. The dermatologist has prescribed me COLCHICINE and FEXOFENADINE as she felt it is the safest option for now. Sadly, if my rash continues to persist, I might begin with steroids. My parents were both worried about my condition and had also brought me to a TCM (Traditional Chinese Medicine) doctor. I am eating both Chinese and western medicine for now and will need to monitor my condition very closely. The TCM doctor has advised the elimination of all spices and fried food in my diet. I will update you again on my condition if it gets any better. Tell your son that he is not battling and suffering this illness alone, i am. Stay strong.
Hi there,
Deletesadly nobody wants to go on steroids but if you can get things under control with them you can often taper off. Our consultant strongly believes that if you can nip things in the bud it prevents a more serious situation. When Dan was not diagnosed and very ill I am convinced the high dose of steroids saved him. He was so ill, covered in the hives, vomiting and his feet were so swollen he had to crawl to the telephone to ask for help.
Now Dan is on an immune suppressant he is off the steroids and although he feels the itching and swelling starting and aching muscles the rash has kept away. We have a new challenge now with nocturnal seizures. He has had 6 so far and due to the nature of the muscle spasms the doctor thinks something is wrong with the frontal lobe of his brain. I will update when we see the neurologist. Dan found strong doses of anti-histamines helped. Night times are not good. Do you wake about 4 am with night sweats? Poor Dan soaks his bed. The consultant says it is where his pituitary gland inflames.
Please don't be scared of steroids. The benefits really do outweigh the risk. I hope things improve for you really soon. xx
Hi Elaine,
ReplyDeleteThe condition of my UV has improved. I've wrote a comment in your recent post regarding on how I've managed to battle through this couple of months. Also, I do experience daily night sweats and breathing difficulties at the initial stage. It was pretty hard to get to sleep. The antihistamines doesn't really work consistently. The rash would sometimes get so unbearable and swollen. Urticarial Vasculitis is considered a rare illness here and the doctors couldn't assure me if there is a possibility of full recovery. I decided to go with my parent's advice to seek for alternatives besides western medication and I'm finally getting better. During my battle with UV, I've seen how upset and worry my parents would get due to my condition. I can understand how you would feel as a mother to be going through UV with Dan. Although UV is not considered as a terminal illness, the negative effects that comes with UV is unbearable and difficult to battle through. I'm a victim of this illness myself and I'm keeping my fingers crossed that it will be gone for good.
Hoping that Dan's condition would improve swiftly with time. Thank you for your reply Elaine :)
Hi there
Deleteyou can get some really good advice and support from the Lauren Currie Twighlight Trust, Browse it in the net, It is a good way to swop ideas. We have had a couple of good days with Dan at the moment but I have my fingers crossed. Wishing you all the best and continued improvement, Elaine.