Hello everyone!
Well my paed has told me once again that Maddi "can't possibly have any form of RA" due to her last lot of bloods - checking inflammatory markers - being normal. this has happened before but can be followed by an abnormal lot of bloods next time! ( Our rheumys haven't flicked us off just yet..)
So I am at my wits end - because she is still so sick!! Less aches and pains (unless out in the cold) but more and more nausea. so we are at the stage of trialling dietary 'stuff' - dairy free for now....
So I am probably not 'belonging' to this forum anymore - even though she has an awful lot of symptoms very similar or the same to a lot expalined by all of you - can that really be a HUGE coiincidence??
Anyway its been a very long 12 months that I feel she has floated through from age 6 to 7 in a painful, sick, doctor and hospital filled haze. Doesn't that suck (sorry) for a little girl!!!
I have pulled her from school 'indefinitley' (bringing work from her teacher to home) until I have her feeling better - we are all sick of seeing her struggle through each day feeling sick!! hopefully it won't be forever - but I am going to try everything I can think of to make her feel better or find some answers for a change- before sending her back to school.
Thanks to everyone for supportive posts - I hope you all 'stay well' or keep helping each other 'boost spirits'!
I sometimes go for days without turning on my computer - but when I do I always come here first.
Will keep you all posted if anything new pops up for us - but so far its all very much more of the same...
Will check on you all soon - and hopefully let you know an ANSWER on Maddi's mystery!!! AAAGGHHHH!!
oh sweetie, it sounds like you are doing the right thing by keeping her home for the time being. Do some searching around in your area, you may find other moms who get together for art or science. That is what I did and they had a great time together
Good luck to you and Maddi. I think keeping her at home is the best thing for right now. She doesn't need the added stress, and you don't either.
Pop in now and again to let us know how she is doing. Know that you are always welcome to bounce ideas off of this incredibly smart forum.
Take care and bye for now. shel
I'm sooo sorry that you are still having trouble finding out what is wrong w/ Maddi. You are still welcome here please know that! Are the drs not even considering that she could be steronegative? It can happen in adults I dont see why it cant happen in children.
Its a good thing that your keeping her home from school, she doesnt need the stress. She needs to get better first!! I will keep you and Maddi, and your family in my prayers. Keep us updated on how she is feeling.
I'm so sorry to hear about Maddi. A very wise decision to keep her home until you know better what's going on. I'm sorry to hear that you're no closer to what's wrong with her. And yes, it does suck for a little girl to have to go through this. And it does for you also. I know it's got to be the hardest thing watching your little one be so sick and not being able to do anything about it. My prayers are with you all.
Hugs,
Steph
Good luck to you and your little one. I hope they find out something soon. How heartbreaking.
And don't leave. This seems like a place where everyone is welcomed even if they don't have RA.
I'm so sorry about your little one! It's hard to imagine a sweet little child going through the dreadful pain of RA. Even if it is not RA, we will always be here for you. My prayers are with you and Maddi.
Please continue to check in when you have time. We care so much for you and Maddi, and it would leave a huge hole in our group if you were gone.
Please let us know how you are doing and anything new you find out.
Much love to you both.
Hugs, Nini
I was hoping to hear better news. I'm so sorry. Please remember that you and Maddi are "family" now and you will always belong. I hope to hear that the doctors have found an answer once and for all. In the meantime, we will welcome your updates and comments, along with vents and anger, if need be, any old time. Hugs.Hi and I feel like the others, we are so sorry Maddi is sick and that you struggle everyday with being a 'super mom', and we don't want you to quit writing us. It is so heartbreaking to have a chronically sick child, I know what it is like, and you keep feeling it is something you must do to help her!! BUT what?? ONLy you know her everyday life and what works and what doesn't. The symptoms are worse in the cold? , that is surely a clue to the doctors?
I wish you the best and please know you are a great mother. So many people on this board support your efforts to find out what this is!!
Please do check in now and then, and know we are thinking of you and Maddi. With love, Lynda
Thanks guys!
How beautiful - you know i was just telling my husband how the saddest stories are not what brings me to tears - but when paople show true compassion thats when I tear up!
Here I am suggesting I may not post often - how can I not!! You guys are so supportive and I really need that right now. I think I will do my best to make time for these forums!
You all supported my home school decision! People here who try - but just don't get it give me that worried "oh dear" look or comment. They are worried about the social implications but we have them already because of this illness - we have much more to deal with right now than social issues - and I would love to see the day when that is all we need to deal with!
And yes - the cold!!! it is our biggest worry for sure. She is feeling 'good' today - and its sunny and not freezing like the last couple of icy cold days when she felt really sick! I am so going to push this with the docs more than ever (i already have really) - it doesn't seem to give them any answers though!
I am seeing a naturapath for the first time today - to try a 'fresh' approach - who knows what it may bring - nothing to lose anyway.
So you have all done it now. I am afraid you will be receiveing more of my extra long posts (I can't help but ramble...). I will check in as much as I can - probably more than ever.
You guys are the BEST!!!! (and maybe I am feeling better after a good nights sleep...)
I'm glad you're sticking around! Good luck with the naturapath!!
deb
Dear Maddi's Mommy, I'm really glad you will be hanging out with us. There are so many people here who have 'been there -done that' and what is better than real experiences. I believe you were one of the first ones to respond to my posts, even though you had problems of your own. Thanks!
We want to support you, more than anything!
I think a lot of people have homeschooled and I'm sure they can share with you their experiences.( My chronically sick son went to school, but you know what ,he had a terrible time while on those medications, trying to think and keep up must have been awful for him. He had a young teacher who wouldn't listen to me!! But, he probably should have been kept out of school, for 6 months/a year, who knows as he had behavioral problems as well as not doing the work at school. (He and his little friends sprayed the boy's bathroom with pee!!OMG, I just remembered that and it seems sorta funny now, but we all got into trouble for that one!!)Parent teacher visits were frequent!! I think you are very smart to do this!!
Boy if we could only live this life over....expecially when we talk about raising children. He turned out to be a great guy, very smart, got A's in college, and great job as an engineer now!, a partner in the firm!!, So.....we musta done something right.
I'm doing the rambling, you know we want to hear how you two are doing and the rest of your family, and your new addition...I feel better today knowing you will be posting .Love ya, Lynda
Copyright ArthritisInsight.com