Personal Stories

2 comments on “Personal Stories”

  1. shelley couper Reply

    Hi Rhonda thanks for sharing your story and I was wondering if you could share any experience or advice with me. I have a son who is turning 5 in 2 weeks and since last November he has been experiencing some health concerns. He turned 4 at the end of July last year and shortly after I noticed that he was changing and was not quite himself. He was moody, starting to throw huge tantrums that were not like the usual ones he threw and generally looked ‘unwell’. A friend who spent a lot of time with us agreed. In November he woke one morning and was limping. He said his knee hurt but carried on to do all the things that he normally does. He did not appear to be in any pain a part from the limp so I largely ignored it thinking it was just a bump or twist as he is a very very active young boy. The next day I took him to the doctors just to check still thinking that he had just bumped it. We were then sent to Waitakere Hospital for tests and xrays all showing up nothing. We then went on to see a bone specialist and again nothing was found. Will continued to limp for 8 days and after that was fine.
    We went camping at the end of January with some friends and Wills woke one morning very grizzly and crying saying he couldnt walk to the toilet, we had had a very late night the night before setting up so I thought that he was just been silly and brushed it off. We went about our day and that night he came to me looking terrible, glassy blood shot eyes and very teary, he wanted to go to sleep and was asleep within 5 mins. That night he woke crying but went back to sleep and then woke in the morning crying and screaming in pain. His ankle was sore, we could not touch it (but this is how he reacts when he is normally sore with anything) slightly warm, slightly swollen and slightly red. He had to be pushed around in the pram until about 2/2.30 in the afternoon he also said that his hand was sore. To cut a long story short this seemed to affect him for a couple of weeks with stiffness and just not been himself athough the pain seemed to have gone. We saw an excellent specialist at the hospital and after 6 months 4 of which he had absolutely no other symptoms it was thought that he had reactive arthristis. Of course sods law we left seeing the specailist and within the next couple of weeks he woke 4 nights in a row crying with a sore ankle knee and hand. Then 4 days later he had his tonsils out and after pain relief for a week had stopped he woke 2 nights crying with a sore ankle knee and hand. Again a couple of weeks later he didnt look very well on the wednesday was very grizzly on the thursday and then woke with a sore knee. The next weekend he played rugby league and it was an absolutely freezing cold day, they were warming up at 8.30 in the morning and he looked very uncomfortable and when his hand is sore he holds it in a certain way, usually against his body, 15 minutes into the game he turned to his father and I and the look on his face was agony! He stopped playing and his hand remained sore until lunch time. Last Saturday night he had been sitting down for about 45 mins and when he got up he was limping, said his knee was sore and limped until today. I took him to the doctor on Wednesday and the knee was visibly swollen but we were able to touch it and he said it didnt hurt.

    The reason for my probably overdetailed email is really to get some advice on how best to manage my own feelings whilst we are trying to work out if this is infact arthritis or not. I have every faith in the specialist we are seeing and also our GP who are not really sure what is going on with Wills yet and I do understand that it can take sometime and we just have to wait and observe what is going on.

    Wills is a super active little man who has always found it difficult to show he is in pain or has hurt himself. When he gets hurt his immediate reaction is to get angry or run up to me wrap his arms around my legs and punch me. If you ask him if he is ok he shouts at you and gets very angry. Because of the reaction he has and this is how it is if he has these joints pains we pay them very little attention. Obvisiously we give him lots of cuddles if he is crying in pain but for instance the limp we largerly ignore and if he wants to run around with his brothers playing rugby we let him. I have found that I get very teary when I see him like this, I get frustrated that Im not sure what is wrong with him and this might seem a strange thing to say but sometimes I think it would be better to say yes he has arthritis so that I knew what was wrong and could do something about it. Of course I DO NOT want him to have arthritis but hopefully you understand what I mean. Some of our friends keep saying that they think it is just growing pains, the kindy teacher said its probably just growing pains, and others to have said oh im sure its just growing pains. I am sure it is not growing pains! We happened to see a locum doctor at the beginning of all this who I perhaps took the wrong way but we did not connect if you like and I found him very patranizing and he told me this child does not have arthritis i have seen children with arthritis and this is not what it looks like!!! I didnt like the attitude but great I thought but what is wrong with him????

    Do you know of others that are or have been in this position of a long diagnoisis or the story doesnt quite fit and are just waiting and observing what happens? Do you have any advice

    Anything would be helpful thanks for your time
    Shelley

  2. Rhonda Butler Reply

    Hi Shelley. sorry for the late reply. It has been a while since we went through this. I don’t know if you have finally got your results but if it is Arthritis the support meetings that KWA have are really helpful just talking and meeting other people and finding out how they cope. You do come away feeling not so alone. It is important to introduce them to other children also with arthritis as this makes them feel not so isolated normal if you like to say. We found hot spas helped with the pain and tried as best as we could to keep the family structure as routine as possible( they are stronger than we realise), they don’t want to feel different or left out. KWA have outings for the children and have a fabulous time. But for you I recommend one of the support meetings . They usually meet once a month . Contact above to fine out when the next meeting is, it is just mums like you. Hope this helps and all the best

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