HI guys, sorry I haven't been replying to posts etc, but had a major trauma here this week. My 11 year old little boy had a fit on Tuesday am, at 6am, he has never had one before and I can tell you I panicked, the ambulance came and he had fitted for btween 5-10 mins violently and then had what they call a post-ictal period of 1 hour. It was a terrible experience and one I hope to never repeat. It may never happen again according to the Drs or it could be the start of something serious. He did have a head injury 4-5 weeks ago and the Drs can't guarantee that this did not cause it. He is home now and we have to supervise him a lot more, riding his bike, swimming, he is not allowed to lock doors to the toilet/bathroom/ bedroom. Please say a prayer for him.
As for me I still have the chest infection, saw Dr today and she said no more antibiotics as I have had too many, I will have to keep up the asthma treatment and persevere with my patience of the infection getting better. So for now no MTX and definitely no commencement of RITUXIMAB as was planned. My rheumy may want me to have a CT Scan as Xray showed tram-tracking which possibly means bronchiectasis from my RA, which would disallow me any biologic treatment due to dormant infection in the lungs (if it ever goes away at all to become dormant). So for now steroids are the go, my GP says they are helping my asthma but hindering the infection improving!!!!!!!! HEEEEELLLLLLLLLLLPPPPPPPPPPPPPP - Janie PS I am also now wearing my Darth Vader air boot due to metatarsal fracture not healing due to steroidal osteoporosis.
I will pray for you and your son!
You poor thing, my heart goes out to you and all you are going through.
Hopefully all will improve soon - and I do hope that is the end of that for your son!
Stay strong and hang in there!
Oh Janie, I am really sorry about your son. How frightning that must have been. I hope it was just a one off and doesnt happen again. It might have been from the head injury.
Sorry to hear that you too arent feeling good. Darn infections are the bain of our lives.Hope you get better soon.
Take care
janie you poor thing. you have been through enough already without extra on your plate. its so scary when your kids are sick. i used to have fits up until i was about 12 , but only with a high fever. did your son have a cold or anything. they are called a febrile convulsion. but i am sure the doctors did a full going over. i have heard of delayed concussion but to have a fit that long after the trauma is unusual. Please keep us informed. I will be thinking of you both.hopefully your foot will heal now you have the boot. Take care. AllyHey Janie love, well you know I know what is happening already and am already with you. God, you guys are having a rotten time of it. My Ma is a bit of a prayer warrior so I have told her about you and your situation and you shall be in her prayers too, darl. I'll kep your son and you in my thoughts. Nothing is as scary as seeing our kids really sick..Hey Janie~ I know how scary a seizure is, my son used to have them. He was much younger, only 3 when they started. It took about six months and many different med combos but finally his seizure disorder was controlled. During that 6 months he had hundreds of them though. He had grand mal seizures like your son, and the cause of them was never found. He eventually out grew them, he is amost 24 now and has not had one since he got on the right meds. Oh, and he was on the meds for 6 years.
For my son, since there was no apparent cause ie a head injury or illness, and since they were grand mal and lasted under two minutes, and due to his age, they predicted that he would outgrow them. It might not go that way for your son, but the meds (and I know they have new ones now too) did the trick and completley stopped them. I hope that encourages you. I do remember seeing his little lips turn blue and his little mouth foaming up. It is sooooo scary. And it took a long time to feel at ease again. But things finally did get back to normal. They will for you guys too. You will probably find so many people who will tell you, oh so and so has that and he's a banker now, or stuff like that. You will find that many many people live full, active lives despite their disorder. When my boy was having them, it seemed like everyone I met knew someone who had epilepsy, and they always had an encouraging story to go with it. Keep us posted
Linda
Hi Janie, you've been missed. I'm so sorry to hear about your son's dilemma but very happy to hear that he's doing better and he may never have another bout.
I can't believe that you still have the infection. Have they taken cultures to find out what bacteria or virus is causing this? Have you had IV antibiotics? This has been going on a long time. Explain the tram tracking to me. I hope at some point you can restart your meds. Take care. Lindy
Nothing to say that hasn't been said just lots of theseMy goodness Janie, how much more can you cope with. My heart and prayers go out to you and your son. Hang in there Janie and keep us posted.Oh Janie sweetie, how scary for you! As I was reading your post I was thinking, oh thank God you were with him when it happened and were able to describe to the doctors what he did. I used to work on an ambulance, and these calls were sooo scary for the parents. I have heard of children having one episode and then never again. I pray this is the case with your son.
You sure are having a tough time with your own medical issues. Please take care of yourself and get the rest you need. I pray that you too get the proper care you need and can get your lungs fully recovered. You have had more than your share lately and I feel badly there is nothing more I can do. Please feel free to IM if you want to talk. Many many hugs to you and your son...
Deb
I'm sorry to hear of your troubles Janie. I'm glad to hear that your son appears to be ok for now. Take care of yourself.
Soooo sad to read your post. Hope everything takes a turn for good quickly. Massive good thoughts coming from here. They say prayer groups really do help. I'd say this was a pretty good group sending you good vibes to heal. Take Care
Monk
I'm sorry too, Janie, about what you are going through. My son is wearing a boot like that for the same reason and hates it! Prayers are offered for both you and your son.
Kathy