Update on Liam | Arthritis Information

 

HI guys, I promised I would update you so here it is!

After 3 weeks in hospital participating in hydrotherapy and physiotherapy, psychology etc etc, the Doctors are still saying "generalised widespread pain syndrome" and "Joint hypermobility"  the latter causing joint pain eventually anyway?  If you look these conditions up on the web they say fibromyalgia and myofascial pain?  One of the nurses and physios told me it is like Complex regional pain dystostrophy (CRPD) but with more areas involved.  The Drs believe it is going to be probably for life, and Liam needs to learn to deal with it now and not let his anxiety about it get out of control.  It is a lot for a 12 y.o. epileptic to deal with and its hard trying to put an old head on young shoulders to try and make him understand.  I told the Paediatric RD that I still am not convinced that he doesn't have some type of JIA/AS.  He was so upset in the evenings when I had to leave him to go back to the unit, I did not show him how it was affecting me but I was breaking my heart back at the unit for him. 

So as far as Liam is concerned he had improved before he went in anyhow and he is dealing with the pain fantastically, we are so proud of him.  His anxiety is still being watched carefully and he may need more medical intervention somewhere down the track.

As for me I was so not really able to be there for him as the fatigue was getting me, I was in so much pain but  had to get over to the hospital every am by about 8am as the Drs came at about 8.30 - 9.00am.  It all caught up with me after the first 3 days, I crumpled and had not one ounce of energy and had to phone the welfare officer to pick Luke and Liam up from the school at the hospital for me as I was in tears and completely unable to function.  Luke had to come with me as Dad was working evenings and I had no one he would actually stay overnight with.  It was ok with his teacher and it worked out really well, I really needed him a lot of the time and he just loves helping me. 

So I don't really know if it will return to the level of pain that Liam was having but for now he has made it to 3 full days at school thank God, and starts high school in January 2010!!!

Please know that I appreciate all the prayers and well wishes, advice and care from all of my friends on here.  I am still having to stay in bed, this is day 5, I am totally exhausted.  Boy I missed hubby for lots of reasons but I really appreciate all that he does, when he is not around I find the going very very tough, nearing on impossible.  Regards Janie. 

edited by me for misspelling and colour.
janiefx12009-08-11 22:10:15Glad to hear that Liam is doing better and dealing with it all a little better.

It sounds as if Liam is doing so much better..but now you need to take care of yourself...I hope you feel better really soon xbest wishes to you both hope you feel better soonGlad that he is doing so well.  Especially getting back to school.  Your family continues to be in my prayers. Glad to hear Liam is coping! Do you think getting him interested and passionate about some kind of activity might help get his mind off of things? That's one of my coping skills for anxiety- I keep myself so busy I can't dwell on anything.My very best wishes to you and to your family. I am so sad that Liam has to deal with all this at such a young, innocent age. Thankyou so much guys, I take all of your posts in to my foggy brain area and I really do take them on board. WTBF yes you are right about getting Liam involved in an activity to keep his mind off things, he is collecting all the warhammer armies and painting them, so I know that will help, slight hiccup today, last night after 3 full days at school, he said he was in a lot of pain, so I sent him to bed early etc, this am he said he could not feel the roof of his mouth, (happens with his seizure activity since he has changed drugs) but I sent him to school as thats what all the Drs are telling us to do (except my GP), ( she is a mother too!), phone call came at 12.30, he was having seizure activity which was quite obvious at school and pain factor in his joints '6'.  I reckon both of the conditions set each other off at times!

Snow, I hope you are right about him becoming less aware of his pain, I find it very upsetting to try to ignore his pain and tell him to go to school anyway when he looks so obviously ill to me, I know its all for his better good etc etc but it doesn't make me feel any better for him.  I am going to get a social worker for myself soon so don't worry too much, thanks again all of you, stressed out mother Janie.
Janie, I just had to take the time to tell you how proud I am of you for dealing with all you do.  You are a gold standard mom and your love for your family is beautiful.  I am sorry this ordeal knocked you back, you don't deserve that pain and I am sending you the best of my wishes for hopes of relief.  Liam is quite the guy for learning such a hard adult lesson!  His strength will just multiply with your love and support and the support of his dad and brother as well.  You both have a great team in place to help and  I know that is a comfort.

You take care, Janie and hugs to {{{{{you and Liam}}}}} both!

Janie, I believe that your son will rise to every challenge that presents itself.  He has such great love and support, and a mom who can truely relate to him.  I guess if their is one good thing about your suffering, it would be that you can be there for Liam in ways that most people can't.  Maybe not always in the physical sense, but in your heart and mind their is no holding you back.  Take care of yourself.  You and your fam are in my prayers.Thankyou Waddie, you don't know how much that means to me, I was almost brought to tears, thankyou for taking the time to tell me that, much appreciated, Janie. That wonderful Waddie always knows the best way to put things. I secound that. Great job well done Janie you are a wonderful Mother and you have made great progress with your son's health and diagnoses. Sorry you are wore out. Be proud of yourself.Oh my God, Lincoln and Milly, my head is swelling, I hope I can fit thru the door to go and have some dinner!!!! LOL Thankyou again, you make me feel better about things, I sometimes feel I have let him down as the accident at school seems to have started all his health woes.  I have been to two solicitors as I am not happy that he has been left like this, accidents do happen I know but I have seen people sue for much less/  My solicitor said no point trying to sue as the outcome would not have been any different had the school been more vigilant after the bang on the head!  Oh well, c'est la vie.  Thanks again, love and hugs from me and Liam.  I will try and post another picture again too. waddie... what a nice post!
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