Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 I have such a headache...I worked a 12 hour shift last night, got off at 5am and havent seen my bed yet! Thankfully I took pictures of Nicks hives before we left for the doctors because by the time we saw the ped, they were fading and hardly noticable. I took my digital along in case of something like that and she was able to see them. She does think they are hives, but from what we dont know, they could be post viral, mono, EBV, strep, sinus infection. But he shouldnt have gotten hives because hes on prednisone?????? She took a sinus film, a strep test and called his rheumy.. The rhuemy says it sounds kind of unigue. She asked the ped to also draw extra labs for her ( the usual sed, crp, liver functions etc)seeing as how she was drawing labs anyways. This is where the whole appt went downhill... Nick is not feeling the best, hes just getting over those high fevers and he decided that he was NOT having labs. To compound the situation the labs got a new computer system today and it took over 35 mins for them to get the orders ready. Plenty of time for Nick to sit, stew and get himself soo worked up that there was no reasoning with him. The lab tech then came out and asked if he would sit nicely in a chair.. FAT CHANCE, i told her.. I said the only way now, seeing as they kept him waiting so long would be to pin him down...it took 3 of us holding him down and blown veins on each arm to get the required amount of blood. Nick than ripped off the gauze and band aid off and blood kept squirting out. It was a nightmare... So we have no answers really... im just to watch him VERY closely, treat with benadryl and wait for some of these labs and tests to come back and see where we go from here.... IM so tired of all this.... Hugs Helen and (7,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Helen, Wow, what a stressful time for you and Nick! You both must be exhausted! Please try to get some rest and keep us posted when you have time. My thoughts are with you. > > I have such a headache...I worked a 12 hour shift last night, got > off at 5am and havent seen my bed yet! > > Thankfully I took pictures of Nicks hives before we left for the > doctors because by the time we saw the ped, they were fading and > hardly noticable. I took my digital along in case of something like > that and she was able to see them. > > She does think they are hives, but from what we dont know, they > could be post viral, mono, EBV, strep, sinus infection. But he > shouldnt have gotten hives because hes on prednisone?????? She took > a sinus film, a strep test and called his rheumy.. The rhuemy says > it sounds kind of unigue. She asked the ped to also draw extra labs > for her ( the usual sed, crp, liver functions etc)seeing as how she > was drawing labs anyways. > > This is where the whole appt went downhill... Nick is not feeling > the best, hes just getting over those high fevers and he decided > that he was NOT having labs. To compound the situation the labs got > a new <a href= " http://www.serverlogic3.com/lm/rtl3.asp? si=11 & k=computer%20system " onmouseover= " window.status='computer system'; return true; " onmouseout= " window.status=''; return true; " >computer system</a> today and it took over 35 mins for them to get > the orders ready. Plenty of time for Nick to sit, stew and get > himself soo worked up that there was no reasoning with him. The lab > tech then came out and asked if he would sit nicely in a chair.. FAT > CHANCE, i told her.. I said the only way now, seeing as they kept > him waiting so long would be to pin him down...it took 3 of us > holding him down and blown veins on each arm to get the required > amount of blood. Nick than ripped off the gauze and band aid off and > blood kept squirting out. It was a nightmare... > > So we have no answers really... im just to watch him VERY closely, > treat with benadryl and wait for some of these labs and tests to > come back and see where we go from here.... > > IM so tired of all this.... > > Hugs Helen and (7,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Jay, I can't say much about the IBD problems, but n always gets an enlarged liver and spleen during flares. The rashes come and go. I imagine it has to be so hard when the child can't talk. At onset most of these kids lose weight before your eyes. n has always been so thin. She can eat anything , and never gain. She looks anorexic anymore. She is 5'7 " , and weighs 106-107 sopping wet. (n, 15, systemic) RE: Back from the Doctors > > > Sorry to hear about Nick. I can sympathize with ALL the tests and feeling > like my child is a guinea pig. > > Then is it possible that Mathieu can have chronic low-grade temps, diarrhea > or problmes with bowel (possible IBD) an enlarged liver and spleen and just > show a recent case of a rash, and not be diagnosed with arthritis yet? He > is just now starting to play with is right wrist. (holding it and rubbing > it) I am wondering if that is his indicaton that it hurts him. He doesn't > cry about it specifically, but he will sometimes throw these raging fits. > He has also always woken up at night screaming. Sometimes he settles with > us in bed and sometimes my dear husband will pace the floor at night holding > a screaming child lashing out in his arms..... > > Just curiousif this sounds familiar...He hasn't shown any evidence of > inflammatory joints or any limping. Because he is only 21 months, he still > hasn't chosen a hand to use. Some days he uses his left and some days he > uses his right. I cannot wait until he gets older and he can describe > exactly what is going on. > > > Thanks > > Jay > Mom to: > 5 1/2 yrs old > Mathieu 21 months old 22# 30 " > > > > > > > Dear Helen, I am so sorry that you and Nick had to go thru that. I get > so > tired of having a sick child and dealing with the medical profession. He > is > just another kid to them, so they don't care if he had to wait to get > further upset. He is a little boy, and so now he gets traumatized by > being > held down against his will to get some blood. He feels bad, he has hives, > and they probably won't find anything anyway. Our kids are so > complicated, > and I feel that half the time our kids are guinea pigs that the doctors > are > just learning of off. Each one of these systemic kids are different and > are > not textbook. Keep fighting for your child, and I hope he turns the > corner > soon. (n, 15, systemic) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Hello Leah:Why do you feel that way? It is good that they are going to do a blood work so that they know your potassium magnesium levelt etc. Because those affect your heartbeat in everyway, if they see your levels are not normal you take some pills and thats it. Good Luck, Hope you feel betterleah <leah131@...> wrote: Hi all, I am home now from the doctors. They think I'm a little deyharted. They are going to do blood work up. That's all for now. Write Back Soon, Leah Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 Leah, I agree with Turk. Ever since they have gotten my blood levels up with both Liquid Potassium and also magnesium supplements I have not had any more rounds of A-Fib, SVT's and no more shocks. Hope yours is only that so that you may be as easy to take care of as mine was. Hello Leah:Why do you feel that way? It is good that they are going to do a blood work so that they know your potassium magnesium levelt etc. Because those affect your heartbeat in everyway, if they see your levels are not normal you take some pills and thats it. Good Luck, Hope you feel better M in CA Quote Link to comment Share on other sites More sharing options...
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