Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Hi gang, after crying and crying I called the rheumy,then faxed a 2 paige letter to explain what was going on.He has once again surprised me with how good he can be.I was expecting a lecture because doesnt have a fever.I told him I raised back to 6mg hoping that would get things under control.Wrong thing to do,it could very well backfire,then have to try and raise a little more then a little more until hes so far gone that the systemic symptoms are back and in full force.This kills me but its only temporary.I am to raise up to 20mg pred for one week to regain TOTAL control,call him back Monday and then if hes back to doing great we start tapering again quickly at first,but when we get down to the lower doses we take things much slower.Each child is differant and what works for one might not work for another,its a learning experiance for the rheumys and he now knows is one that has to have a more gentle taper.Hes had some that can just come off of them but not .He was so nice,and patiant with me explaining things.He really threw me off guard.Why cant he act like that all the time.We talked about having his ankle injected next thursday,he told me just to explain what happened and that needs to have the whole thing done.I was concerned the ortho wouldnt do it if the pred took all the swelling away.I hope doesnt blow up again and turn into basketball head,and has trouble breathing from his belly getting hard.Daddys crying again,hes the one that wanted me to call Monday to see if they would raise him back up,now that they have his heart is breaking.Well they say 3 times is the charm,mayby this third attempt to get him off will work.I hope Flash comes back quick and stays around longer.s best weeks have always followed a big up in pred,at least his first few weeks of school should be ok.Like we all say,Its always something.Just when things are going good Arthur sneaks up from behind and gets them.I told a long time ago he wasnt allowed to play with that mean Arthur kid.LOLL.Hugs to all,things should get better for us quickly. Love Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Becki, I am so sorry to hear that isn't doing too well. I'll be thinking about him. Elisheva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Hi Becki and all, so sorry to hear about 's flair... I'm sure it'll be ok, it's just the disappointment that hurts so much. Just when you think your child is finally in remission... but, you'll start again and I'm sure you have the strenght to do it, whatever it takes. You seem such a very brave and committed mom to me. Talk about having a difficult week... despite problems at work, which made me angry and hostile as you've heard (especially poor Robbin), Juho also complains having stiffness in the neck and sore foot from running at school (it's been he's first two days of elementary, so he's really excited). And my dear husband, who's supposed to look after the kids at home, didn't read school notices today and we missed our 5th graders' parents' meeting tonight... ARRGGHHH!! I could just... well, I won't do it, but I can't stop wondering how many kids I really have here? Sorry for being so negative... can't help it. Wish you all a better day tomorrow. Love, Soili & Juho 7 pauci ext. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Hi soili, I think your right about it being a dissapointment.I really thought he would make it this time around.I tried to hold on to the 4mg but I saw a very familiar pattern starting to happen.If it was to continue would have a full blown systemic flair.Sorry to hear about Juhos neck and foot,you do so much to help them then arthur creeps up and messes with something else.Your sweet husband just cant help that he has that Y chromisome,it does get in the way,doesnt it. That poor little girl and her baby brother,its always hard to see a child seperated from their parents,but sometimes its for the best.My kids have gotten a single whack on the bottom or even there little hand slaped once when they were smaller,but Ive seen moms whack there kids over and over in the stores.I used to get the belt on my bare bottom even had a spatula broken once,my mom says it was cheap.Now that I am older she realizes while it was better than what her parents did to her it was wrong and while she didnt stop the cycle,mayby I can,which I have done.When my kids get there bottom smacked its more of an attention getter,that serious privleges are going to be taken away if they dont stop.If that mom came into the clinic drunk,what is she like at home?Dont even want to think about it. I hope Juho takes it easy at school and his soreness goes away. should be like a new child in a day or two with him being put on high doses of pred again.He hasnt had a fever and only a light rash a couple times so he should be able to taper down quickly.I have a question for you that I am going to post seperately.Have a great day and a better tommorrow. Love Becki and 4systemic Re: /rheumy >Hi Becki and all, >so sorry to hear about 's flair... I'm sure it'll be ok, it's >just the disappointment that hurts so much. Just when you think your >child is finally in remission... but, you'll start again and I'm sure >you have the strenght to do it, whatever it takes. You seem such a >very brave and committed mom to me. > >Talk about having a difficult week... despite problems at work, which >made me angry and hostile as you've heard (especially poor Robbin), >Juho also complains having stiffness in the neck and sore foot from >running at school (it's been he's first two days of elementary, so >he's really excited). And my dear husband, who's supposed to look >after the kids at home, didn't read school notices today and we >missed our 5th graders' parents' meeting tonight... ARRGGHHH!! I >could just... well, I won't do it, but I can't stop wondering how >many kids I really have here? >Sorry for being so negative... can't help it. >Wish you all a better day tomorrow. >Love, Soili & Juho 7 pauci ext. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 Becki- I'm glad to hear you were able to talk to 's rheumy and that he was responsive and helpful. Maybe three times is the charm. is in my prayers. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
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