Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Well, after 2 hrs in the doctors office, we are none the wiser. Right now they are checking for EBV and mono. His WBC is low, everything else is ok. Still waiting on the SED. Temp was 100. In the peds words, " he looks pale and listless " he couldnt sit up on the table and continually fell asleep. He doesnt think it's the relafen ( one of my concerns) I'm to call with his heart rate if he has another episode of a racing heart. Other than that, no last day of summer school tomorrow, give zofran for the vomiting, tylenol for the headaches, lots of fluids and give him anything he feels he can try and eat ( hes only managing 1/2 pancake a day right now) and his weight is down to 47lbs. So, its a hurry up and wait game.... hugs Helen and , the limp noodle, (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Helen, Be careful if it is mono. I don't want to scare you, but it was mono that put n into MAS. Always go with your gut. And if he doesn't improve, keep bringing him in. (n, 17,systemic) On Jul 26, 2006, at 8:50 AM, hburger64 wrote: > Well, after 2 hrs in the doctors office, we are none the wiser. Right > now they are checking for EBV and mono. His WBC is low, everything > else is ok. Still waiting on the SED. Temp was 100. > > In the peds words, " he looks pale and listless " he couldnt sit up on > the table and continually fell asleep. He doesnt think it's the > relafen ( one of my concerns) > > I'm to call with his heart rate if he has another episode of a racing > heart. Other than that, no last day of summer school tomorrow, give > zofran for the vomiting, tylenol for the headaches, lots of fluids and > give him anything he feels he can try and eat ( hes only managing 1/2 > pancake a day right now) and his weight is down to 47lbs. > > So, its a hurry up and wait game.... > > hugs Helen and , the limp noodle, (8,systemic) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Helen, Did they draw blood for Mono? Poor Nick surely doesn't need that! Hey remember with the WBC our kids have lower counts than normal anyway because of the methotrexate. ________________________________ From: [mailto: ] On Behalf Of hburger64 Sent: Wednesday, July 26, 2006 10:51 AM Subject: Nick update Well, after 2 hrs in the doctors office, we are none the wiser. Right now they are checking for EBV and mono. His WBC is low, everything else is ok. Still waiting on the SED. Temp was 100. In the peds words, " he looks pale and listless " he couldnt sit up on the table and continually fell asleep. He doesnt think it's the relafen ( one of my concerns) I'm to call with his heart rate if he has another episode of a racing heart. Other than that, no last day of summer school tomorrow, give zofran for the vomiting, tylenol for the headaches, lots of fluids and give him anything he feels he can try and eat ( hes only managing 1/2 pancake a day right now) and his weight is down to 47lbs. So, its a hurry up and wait game.... hugs Helen and , the limp noodle, (8,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Goodness Helen, he does sound like a limp noodle! I hope that the Zofran works to keep him from vomiting and that you can get some food in him...He doesn't have much playing room to loose any weight! Will they get some of his labs back yet today? That is so worrisome about his heart. I hope he doesn't have any more problems with it racing...Have you already checked on all his meds to make sure that its not a side effect from that? I am praying for you guys today and please keep us updated as to how our little Nicky Noodle is doing. (aundrea 11 systemic jra)- -- In , " hburger64 " <hburger64@...> wrote: > > Well, after 2 hrs in the doctors office, we are none the wiser. Right > now they are checking for EBV and mono. His WBC is low, everything > else is ok. Still waiting on the SED. Temp was 100. > > In the peds words, " he looks pale and listless " he couldnt sit up on > the table and continually fell asleep. He doesnt think it's the > relafen ( one of my concerns) > > I'm to call with his heart rate if he has another episode of a racing > heart. Other than that, no last day of summer school tomorrow, give > zofran for the vomiting, tylenol for the headaches, lots of fluids and > give him anything he feels he can try and eat ( hes only managing 1/2 > pancake a day right now) and his weight is down to 47lbs. > > So, its a hurry up and wait game.... > > hugs Helen and , the limp noodle, (8,systemic) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 -, Thanks, yes, I did think of n and mono being the start of her MAS when the ped said he would test for mono. I have the article you sent in Nicks medical file. it's so important to carry with us. hugs Helen and (8,systemic) -- In , Price <bc.price@...> wrote: > > Helen, Be careful if it is mono. I don't want to scare you, but it > was mono that put n into MAS. Always go with your gut. And if > he doesn't improve, keep bringing him in. (n, 17,systemic) > > > > On Jul 26, 2006, at 8:50 AM, hburger64 wrote: > > > Well, after 2 hrs in the doctors office, we are none the wiser. Right > > now they are checking for EBV and mono. His WBC is low, everything > > else is ok. Still waiting on the SED. Temp was 100. > > > > In the peds words, " he looks pale and listless " he couldnt sit up on > > the table and continually fell asleep. He doesnt think it's the > > relafen ( one of my concerns) > > > > I'm to call with his heart rate if he has another episode of a racing > > heart. Other than that, no last day of summer school tomorrow, give > > zofran for the vomiting, tylenol for the headaches, lots of fluids and > > give him anything he feels he can try and eat ( hes only managing 1/2 > > pancake a day right now) and his weight is down to 47lbs. > > > > So, its a hurry up and wait game.... > > > > hugs Helen and , the limp noodle, (8,systemic) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 -leslie, Yes they took blood for the EBV and mono, but i have since heard that they did not take enough so couldnt run the tests. I am not happy. The doctor says to wait and see how he does and if he doesnt improve he will draw more blood and run the tests, but he says he would be suprised if it was either of those. He seems to be a little better this afternoon, he's managed to eat 1/2 a mcd sausage mcgriddle and 1/2 a grilled bologna sandwich. The good news is he has not thrown up today and no more racing heart episodes!!!! hugs Helen and (8,systemic) -- In , " Ray " <leslie@...> wrote: > > Helen, > > Did they draw blood for Mono? Poor Nick surely doesn't need that! Hey > remember with the WBC our kids have lower counts than normal anyway > because of the methotrexate. > > > > > > > > ________________________________ > > From: [mailto: ] On > Behalf Of hburger64 > Sent: Wednesday, July 26, 2006 10:51 AM > > Subject: Nick update > > > > Well, after 2 hrs in the doctors office, we are none the wiser. Right > now they are checking for EBV and mono. His WBC is low, everything > else is ok. Still waiting on the SED. Temp was 100. > > In the peds words, " he looks pale and listless " he couldnt sit up on > the table and continually fell asleep. He doesnt think it's the > relafen ( one of my concerns) > > I'm to call with his heart rate if he has another episode of a racing > heart. Other than that, no last day of summer school tomorrow, give > zofran for the vomiting, tylenol for the headaches, lots of fluids and > give him anything he feels he can try and eat ( hes only managing 1/2 > pancake a day right now) and his weight is down to 47lbs. > > So, its a hurry up and wait game.... > > hugs Helen and , the limp noodle, (8,systemic) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 I am glad to hear that! Be careful with that mono stuff. Sheila (my friend from Ohio) her daughter ended up with mono in the hospital, with liver damage. She is better now, but it was really scary! Ray 952-837-8449 Direct line 952-835-2724 @... <mailto:@blueribbon travel.com> ________________________________ From: [mailto: ] On Behalf Of hburger64 Sent: Wednesday, July 26, 2006 9:18 PM Subject: Re: Nick update -leslie, Yes they took blood for the EBV and mono, but i have since heard that they did not take enough so couldnt run the tests. I am not happy. The doctor says to wait and see how he does and if he doesnt improve he will draw more blood and run the tests, but he says he would be suprised if it was either of those. He seems to be a little better this afternoon, he's managed to eat 1/2 a mcd sausage mcgriddle and 1/2 a grilled bologna sandwich. The good news is he has not thrown up today and no more racing heart episodes!!!! hugs Helen and (8,systemic) -- In <mailto: %40> , " Ray " <leslie@...> wrote: > > Helen, > > Did they draw blood for Mono? Poor Nick surely doesn't need that! Hey > remember with the WBC our kids have lower counts than normal anyway > because of the methotrexate. > > > > > > > > ________________________________ > > From: <mailto: %40> [mailto: <mailto: %40> ] On > Behalf Of hburger64 > Sent: Wednesday, July 26, 2006 10:51 AM > <mailto: %40> > Subject: Nick update > > > > Well, after 2 hrs in the doctors office, we are none the wiser. Right > now they are checking for EBV and mono. His WBC is low, everything > else is ok. Still waiting on the SED. Temp was 100. > > In the peds words, " he looks pale and listless " he couldnt sit up on > the table and continually fell asleep. He doesnt think it's the > relafen ( one of my concerns) > > I'm to call with his heart rate if he has another episode of a racing > heart. Other than that, no last day of summer school tomorrow, give > zofran for the vomiting, tylenol for the headaches, lots of fluids and > give him anything he feels he can try and eat ( hes only managing 1/2 > pancake a day right now) and his weight is down to 47lbs. > > So, its a hurry up and wait game.... > > hugs Helen and , the limp noodle, (8,systemic) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 Helen: I noticed Nick looking pale in some of the pics from conference, and now hearing he's feeling so bad just makes me so sad. I hope and pray he gets to feeling better very soon. He deserves a break! My own Rob went to Kings Island all day today with church youth group, hurts so bad tonight he was almost in tears. He's in bed with pain meds right now...this disease makes me so angry sometimes!! and Rob 17 Spondy On Thu, 27 Jul 2006 02:11:56 -0000 " hburger64 " <hburger64@...> writes: -, Thanks, yes, I did think of n and mono being the start of her MAS when the ped said he would test for mono. I have the article you sent in Nicks medical file. it's so important to carry with us. hugs Helen and (8,systemic) -- In , Price <bc.price@...> wrote: > > Helen, Be careful if it is mono. I don't want to scare you, but it > was mono that put n into MAS. Always go with your gut. And if > he doesn't improve, keep bringing him in. (n, 17,systemic) > > > > On Jul 26, 2006, at 8:50 AM, hburger64 wrote: > > > Well, after 2 hrs in the doctors office, we are none the wiser. Right > > now they are checking for EBV and mono. His WBC is low, everything > > else is ok. Still waiting on the SED. Temp was 100. > > > > In the peds words, " he looks pale and listless " he couldnt sit up on > > the table and continually fell asleep. He doesnt think it's the > > relafen ( one of my concerns) > > > > I'm to call with his heart rate if he has another episode of a racing > > heart. Other than that, no last day of summer school tomorrow, give > > zofran for the vomiting, tylenol for the headaches, lots of fluids and > > give him anything he feels he can try and eat ( hes only managing 1/2 > > pancake a day right now) and his weight is down to 47lbs. > > > > So, its a hurry up and wait game.... > > > > hugs Helen and , the limp noodle, (8,systemic) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 In a message dated 7/27/2006 8:40:08 A.M. Eastern Daylight Time, hburger64@... writes: I was sorry to read that Rob was having a bad night, it makes me so mad that this disease robs our kids of the simple pleasures in life, like being able to go out and have a fun filled, action packed day without having to pay a price for it. It's just so unfair. I really think that is one of the worst parts for me as well too!! I hate it when just doing normal things wrecks her. Yesterday she fell asleep in the car (as she often does) and when we got home, she had to be lifted out of the car from the way her legs were when she fell asleep. After any type of a day hanging out with her friends she is just exhausted. AAArrgghh!!! n and Holly 12 systemic jra since 9/94 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 -Thanks , yea, he is pale, since being dx with SJRA hes never really got that healthy glow back. He just has different shades of pale... I was sorry to read that Rob was having a bad night, it makes me so mad that this disease robs our kids of the simple pleasures in life, like being able to go out and have a fun filled, action packed day without having to pay a price for it. It's just so unfair. I hope Rob was able to get some rest last night and is feeling better today. give him a hug from me, just dont tell him its from me..he would be mortified to be getting a hug from a stranger, you know those teenage boys and hugging!! hugs Helen and (8,systemic) -- In , snooksmama@... wrote: > > Helen: > I noticed Nick looking pale in some of the pics from conference, and now > hearing he's feeling so bad just makes me so sad. I hope and pray he gets > to feeling better very soon. He deserves a break! > My own Rob went to Kings Island all day today with church youth group, > hurts so bad tonight he was almost in tears. He's in bed with pain meds > right now...this disease makes me so angry sometimes!! > and Rob 17 Spondy > > On Thu, 27 Jul 2006 02:11:56 -0000 " hburger64 " <hburger64@...> > writes: > -, > > Thanks, yes, I did think of n and mono being the start of her > MAS when the ped said he would test for mono. I have the article you > sent in Nicks medical file. it's so important to carry with us. > > hugs Helen and (8,systemic) > > -- In , Price <bc.price@> wrote: > > > > Helen, Be careful if it is mono. I don't want to scare you, but > it > > was mono that put n into MAS. Always go with your gut. And > if > > he doesn't improve, keep bringing him in. (n, > 17,systemic) > > > > > > > > On Jul 26, 2006, at 8:50 AM, hburger64 wrote: > > > > > Well, after 2 hrs in the doctors office, we are none the wiser. > Right > > > now they are checking for EBV and mono. His WBC is low, > everything > > > else is ok. Still waiting on the SED. Temp was 100. > > > > > > In the peds words, " he looks pale and listless " he couldnt sit > up on > > > the table and continually fell asleep. He doesnt think it's the > > > relafen ( one of my concerns) > > > > > > I'm to call with his heart rate if he has another episode of a > racing > > > heart. Other than that, no last day of summer school tomorrow, > give > > > zofran for the vomiting, tylenol for the headaches, lots of > fluids and > > > give him anything he feels he can try and eat ( hes only > managing 1/2 > > > pancake a day right now) and his weight is down to 47lbs. > > > > > > So, its a hurry up and wait game.... > > > > > > hugs Helen and , the limp noodle, (8,systemic) > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Helen: How's Nick today?? Rob just got up, wanted more pain meds and he's crawled back into bed. He is so miserable. He is getting senior pictures made late this afternoon too, at the waterfront. Yes, I know what you mean about the different shades of paleness. I can always tell when Rob is bad as his color changes. I hope that Nick is able to eat today and bounces back quickly.... Wish I could have been with all of you at conference...sounds like you had a blast! Robbin, you are such a hoot!! The pictures were wonderful. Gotta go wash Rob's caddy...its going to be in some of the pictures. I'll post some when we get them back. He was supposed to wash it today, but Mom will jump in and take up the slack... Have a good day.. and Rob 17 Spondy On Thu, 27 Jul 2006 12:37:21 -0000 " hburger64 " <hburger64@...> writes: -Thanks , yea, he is pale, since being dx with SJRA hes never really got that healthy glow back. He just has different shades of pale... I was sorry to read that Rob was having a bad night, it makes me so mad that this disease robs our kids of the simple pleasures in life, like being able to go out and have a fun filled, action packed day without having to pay a price for it. It's just so unfair. I hope Rob was able to get some rest last night and is feeling better today. give him a hug from me, just dont tell him its from me..he would be mortified to be getting a hug from a stranger, you know those teenage boys and hugging!! hugs Helen and (8,systemic) -- In , snooksmama@... wrote: > > Helen: > I noticed Nick looking pale in some of the pics from conference, and now > hearing he's feeling so bad just makes me so sad. I hope and pray he gets > to feeling better very soon. He deserves a break! > My own Rob went to Kings Island all day today with church youth group, > hurts so bad tonight he was almost in tears. He's in bed with pain meds > right now...this disease makes me so angry sometimes!! > and Rob 17 Spondy > > On Thu, 27 Jul 2006 02:11:56 -0000 " hburger64 " <hburger64@...> > writes: > -, > > Thanks, yes, I did think of n and mono being the start of her > MAS when the ped said he would test for mono. I have the article you > sent in Nicks medical file. it's so important to carry with us. > > hugs Helen and (8,systemic) > > -- In , Price <bc.price@> wrote: > > > > Helen, Be careful if it is mono. I don't want to scare you, but > it > > was mono that put n into MAS. Always go with your gut. And > if > > he doesn't improve, keep bringing him in. (n, > 17,systemic) > > > > > > > > On Jul 26, 2006, at 8:50 AM, hburger64 wrote: > > > > > Well, after 2 hrs in the doctors office, we are none the wiser. > Right > > > now they are checking for EBV and mono. His WBC is low, > everything > > > else is ok. Still waiting on the SED. Temp was 100. > > > > > > In the peds words, " he looks pale and listless " he couldnt sit > up on > > > the table and continually fell asleep. He doesnt think it's the > > > relafen ( one of my concerns) > > > > > > I'm to call with his heart rate if he has another episode of a > racing > > > heart. Other than that, no last day of summer school tomorrow, > give > > > zofran for the vomiting, tylenol for the headaches, lots of > fluids and > > > give him anything he feels he can try and eat ( hes only > managing 1/2 > > > pancake a day right now) and his weight is down to 47lbs. > > > > > > So, its a hurry up and wait game.... > > > > > > hugs Helen and , the limp noodle, (8,systemic) > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2007 Report Share Posted October 20, 2007 Hi Helen: First, I'm very happy you are feeling better! Welcome back, we missed you. I'm also glad to hear Nick's school year is going so much better than last year. Sounds like he has much better teachers this time around. Wow! 7 shots in one week, poor guy. I can't say I blame him for the needle phobia. Hannah will be getting 4 shots on the 30th and I thought that was bad! Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines Sending prayers & happy thoughts, Beth :-) Nick Update We had our 1st follow up since the VariZIG shots on Sunday, on Wednesday. Nick is doing well, no signs of any pox. His only complaint is his right shoulder which is bothering him. We have to watch for a flare because we have boosted his immune system with the VariZIG shots. But his labs are all good.Yesterday was his flu shot, his 6th needle of the week and he needs MTX tonight, #7. I think hes become a little needle shy this week after the very painful variZIG shots. He cried before his flu shot (The kids have been off school the past 3 days, I think the break has done nicholas good. He needed some down time. I actually got a good report from his teacher at conferences on Tuesday night. I was plesantly suprised at how " compliant " he is being. he is using a lot of self control and doing as hes told. Hes working hard at advocating for himself and his actually informing them of plain levels )) I am very happy so far with the new teacher and especially happy with his new SP ED teacher, shes a doll. I quick high tailed it out before the principal hunted me down to dampen my good mood ( she emailed me about her concern about Nick, "dilly dalling" to the bus. He's the only one who rides his bus, so whats the deal. I very nicely reminded her that Im sure by the end of the day he is tired and might hurt but ill be sure to tell him to hurry to his bus!!)All in all its been a good week. Im also feeling better and I hope to play a more active part on the list. Ive been trying to read along, but havent had the heart to join in.hugs Helen and (10,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 -, hubby is feeling good, he's busy winterizing and working on his resume. There are plenty of jobs in his field around so im not overly worried. Just concerned he will make what he was making and the medical benefits are decent. I also want him to find a job where hes happy. I think a new direction within his feild would be a good change and new challenge for him. Hows Rob doing, ive been reading along and worried about the stress that school is placing on him. Its just not fair and shouldnt happen in this day and age. a full wrok load just to retain medical is horrendous for a child with chronic illnesses. hugs Helen and (10,systemic) -- In , snooksmama@... wrote: > > Helen, > I'm so very glad to hear that you are feeling better. Bless your heart, you have had so much lately! I'm also so glad to hear that Nick is doing well after all the trauma this week. Wow, what a great start to the school year, especially after how horrible last year ended. Its about time you guys got a break! > How is your hubby feeling and doing?? > I don't envy you your very cold winters...we get enough of it as it is here in southern Indiana/Kentucky border...I guess I'm a southern belle at heart! > Take care, > and Rob 18 Spondy > > Nick Update > > > > We had our 1st follow up since the VariZIG shots on Sunday, on > > Wednesday. Nick is doing well, no signs of any pox. His only > > complaint > > is his right shoulder which is bothering him. We have to watch > > for a > > flare because we have boosted his immune system with the VariZIG > > shots. > > But his labs are all good. > > > > Yesterday was his flu shot, his 6th needle of the week and he > > needs MTX > > tonight, #7. I think hes become a little needle shy this week > > after the > > very painful variZIG shots. He cried before his flu shot ( > > > > The kids have been off school the past 3 days, I think the break > > has > > done nicholas good. He needed some down time. I actually got a > > good > > report from his teacher at conferences on Tuesday night. I was > > plesantly suprised at how " compliant " he is being. he is > > using a lot > > of self control and doing as hes told. Hes working hard at > > advocating > > for himself and his actually informing them of plain levels )) > > I am > > very happy so far with the new teacher and especially happy with > > his > > new SP ED teacher, shes a doll. I quick high tailed it out > > before the > > principal hunted me down to dampen my good mood ( she emailed me > > about > > her concern about Nick, " dilly dalling " to the bus. He's the > > only one > > who rides his bus, so whats the deal. I very nicely reminded her > > that > > Im sure by the end of the day he is tired and might hurt but ill > > be > > sure to tell him to hurry to his bus!!) > > > > All in all its been a good week. > > > > Im also feeling better and I hope to play a more active part on > > the > > list. Ive been trying to read along, but havent had the heart to > > join > > in. > > > > hugs Helen and (10,systemic) > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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