HI guys, well we left Tuesday at 10am and arrived in Brisbane at 2.40pm. We looked around the big city shopswhich was a treat for us both as our home town is pretty rural so big shops are rare.
We treated ourselves to lunch at McD's, and we had a crispy creme doughnut!!! MMmm mmmmm!!!!!
Then we headed for the hotel, by this time I could hardly walk with pain and stiffness, my feet, knees and hips were awful so we just took it slowly as it wasn't too far. Poor Liam was feeling nauseous and managed to vomit twice, so I just cuddles him and put the air conditioning on as it was a very muggy day. He didn't feel like food so we abandoned the room service idea!
After a great sleep we headed off to the hospital to see Liams paed RD.
He said that as Liam had such a great response to the prednisone and flared after stopping it, he was putting him on 20mg of MTX per week, I said that was rather a large dose and he said children tend to tolerate it better than adults and he should be fine. Img of folic acid daily apart from MTX day, and raise pred to 10mg, so that Liam can get back to school. So in 3 months we have to go back and see whats happening he said to expect MTX for 1-2 years. I asked him is it arthritis then or if not what is it? He said he really still doesn't know but probably JIA, definately autoimmune in nature. He also said Liams bloods show mild cyclic neutropenia, (low white cell count with temperatures once a month) and he will investigate this if the pattern continues! So my poor little boy is now on MTX which breaks my heart, I know I am being a baby but I just can't work out why him? I can handle it but don't want him to have to cope with it too.
He will be gradually returning to full time classes at school starting Monday if his MTX doesn't cause any nasty side effects.
Then I asked my GP just now, does he need a Chest X ray before starting as I forgot to ask RD, she said she would do it if it was up to her, but some Drs don't? Also said she read something stating that if it is HLAB27 arthritis, then MTX and prednisone are not usually used for treatment?????? I think she said antiinflammatories are used. I am so confused - I pray that he will wake up one day and it will all be gone. He is worried about the weight gain due to pred increase again too.
Thanks guys for any advice and for listening to me. Janie.
PS After the docs, we went shopping again and then to see Transporter 3, an action movie, I had to sit down somewhere as I was falling asleep!
God bless you both. You know I think is perfectly normal to feel that way. You want your child to have the best life possible and at the very least good health. It doesn't make sense for mother AND child to be sick. I could never wrap my brain around that. I talk about my daughter often, it is difficult to pretend she never existed, so you probably know I was in a similar situation emotionally where my daughter and I both became ill around the same time. She was rapidly regressing by whatever caused her illness and I was flaring madly on a daily basis with uncontrollable RA. Doctors ran all sorts of metabolic, genetic testing, etc. on her. I think she was in pain a lot as well looking back on some of her pictures but she soon became nonverbal and unable to tell me where she hurt, etc.
So thankfully, Liam can tell you where it hurts or if he is being helped by his meds at all and maybe one day in the near future he can be cured of this crazy condition and have a fantastic life. There is a good chance he could also outgrow it from what I read about children with RA. So there is light at the end of the tunnel possibly for his condition. but you are doing all you can and you are wonderful mum and you guys are enjoying life in spite of. Hugs to you both. God bless.