Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Congrats to for his SO work!!!! Great job!!! It very well could be thyroid a. You're doing the right thing by getting the bloodwork done. Also test for any viral or bacterial illnesses, such as Epstein Barr and mono. If it puts your mind at ease at all, you should know that is older than the typical age for leukemia to strike kids with DS. Good luck and please keep us posted. HUGS, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Congrats to on his special olympics awards! I hope they are able to get some blood from and figure out what is up.....good luck! Becky a wrote: have two things first the great news is nathan got second place at special olympics in the softball throw and in the 50 meter dash, yaaaaa, then ofcourse he was treated to mcdonalds, lol the second is im getting really worried about nathan, he always seems sooo tired, and the doc is trying to get proper coding so we can sedate him for blood draws, as this is a TASK as many of you parents know, He wears his bipap well, and we notice no apnea while using it, so pressure should be ok, but he continues to fall asleep at school and at home, goes to bed around 9-10pm, and sleeps all night, has pretty much since he started with the cpap, other than the occasional insomnia. He naps after school almost daily. I figure its probably just thyroid, and hoping that it will be as simple as needing some synthroid but after visiting dr linshens (SP?) site im worried about his oxygen levels, maybe they are getting low? or worse of all luekemia, it talked about the extreme fatique and weakness, and infections, he has had an ongoing snotty nose for long time now, but that is not unusual for him, and a few ear infx, too but is also not unusual, even after mcdonals after special olymics he slept the whole 30minutes home, fell asleep b4 we even got out of the neighboring city where the olympics are held. Its hard to get him out of bed, he puts his head down often and falls asleep at school frequently, no fevers that any of us have noticed, just the great fatiue, snotty nose and occasional moist cough, lung sounds clear to me and to school nurse, but as a nurse that doesnt really mean anything iv had pts b4 who sound clear to us but have pnuemonia never the less, the doctor is aware of this and i keep notifying and she is trying to see about blood draw but im at a loss of what else to do, any suggestions? should i try his iowa city doctors? worried , shawna __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Congrats to !!! Be sure to check B12 and RBC...iron levels too. was definitely exhausted from both of these deficiencies and I never suspected because her diet was so good and her thyroid ok. Good luck Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Hi a, Congratulations !! That is wonderful. Sorry to hear on what you have written on what is going through. Prayers that something works out. Irma,17,DS/ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 HI a, First of all - Congrats to on his SO honors - that's so exciting. I can't wait til is involved in SO - I guess that'll happen next year when he's 8! Secondly, Can totally relate to the worries about lethargy. We've been deep in that since the 1st of the year. What we found: Massive constipation that I didn't even know was there. Found it on an X-ray. He'd been having BM's but was struggling more to get them out. Turns out he was just letting out the tip of the iceberg if you will! Now he's on Miralax and feeling much better. Then we checked the thyroid and his TSH levels were high, but not scary high - T3 and T4 were normal BUT he had all these symptoms of Hypothyroidism - checked his anti-thyroid antibodies and they were off the chart high!!! So he's now on Synthroid. We also have an ongoing low WBC count - finally saw the Hematologist a few weeks ago. She's concerned and wants to know why he has the Leukopenia. We go today to check thyroid levels for medication adjustment if needed and for her to check some things out in his blood and study his cells under the microscope. Bottom line for us: His ANC count is in the 600's (absolute neutrophil count) - for normal healthy person it should be around 1500! If it dips below 500 she wants to do a BONE MARROW BIOPSY! I'm a bit nervous of what she finds today, she'll know something by tomorrow. I " m actually off here in a few minutes to get from school and head to the hospital for the draw. This time we are going right to the Hem/Onc ward and having those nurses draw. As far as how to get the draw done. I can't tell you how much the social story has made a difference for us. Before it took about 5 people. Now he doesn't enjoy it, but he follows the pics and knows what's next. IE: first the rubber band around the arm, then the stick, then the tubes, then the bandaid, all done - MILKSHAKE!!! He's doing so much better. He better get used to it as we'll be drawing blood AT LEAST every 3 months with the thyroid til we get it straight and that doesn't include the Hematology issues! You're doing the right thing to pursue it. I hope you can get the blood draw and get some answers. Keep a log so you have a better idea of what each day is really like and ask his teachers their observations as well. Keep us posted, I know how you're feeling - a little scared! Hang in there, Jayne Who's alot scared for the next bout of news!!! a wrote: have two things first the great news is nathan got second place at special olympics in the softball throw and in the 50 meter dash, yaaaaa, then ofcourse he was treated to mcdonalds, lol the second is im getting really worried about nathan, he always seems sooo tired, and the doc is trying to get proper coding so we can sedate him for blood draws, as this is a TASK as many of you parents know, He wears his bipap well, and we notice no apnea while using it, so pressure should be ok, but he continues to fall asleep at school and at home, goes to bed around 9-10pm, and sleeps all night, has pretty much since he started with the cpap, other than the occasional insomnia. He naps after school almost daily. I figure its probably just thyroid, and hoping that it will be as simple as needing some synthroid but after visiting dr linshens (SP?) site im worried about his oxygen levels, maybe they are getting low? or worse of all luekemia, it talked about the extreme fatique and weakness, and infections, he has had an ongoing snotty nose for long time now, but that is not unusual for him, and a few ear infx, too but is also not unusual, even after mcdonals after special olymics he slept the whole 30minutes home, fell asleep b4 we even got out of the neighboring city where the olympics are held. Its hard to get him out of bed, he puts his head down often and falls asleep at school frequently, no fevers that any of us have noticed, just the great fatiue, snotty nose and occasional moist cough, lung sounds clear to me and to school nurse, but as a nurse that doesnt really mean anything iv had pts b4 who sound clear to us but have pnuemonia never the less, the doctor is aware of this and i keep notifying and she is trying to see about blood draw but im at a loss of what else to do, any suggestions? should i try his iowa city doctors? worried , shawna __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Jayne!!! I can't believe this is happening to my man Mr. J. Do you uses Emelin creme? It numbs the area prior to a stick??? Unfortunately, Tori LOVES pinchies as she calls it. I know, she is odd. Give him a big hug from us and let me know what we find out! Liz Re: SO, fatigue > HI a, > First of all - Congrats to on his SO honors - that's so exciting. > I can't wait til is involved in SO - I guess that'll happen next > year when he's 8! > > Secondly, Can totally relate to the worries about lethargy. We've been > deep in that since the 1st of the year. What we found: > > Massive constipation that I didn't even know was there. Found it on an > X-ray. He'd been having BM's but was struggling more to get them out. > Turns out he was just letting out the tip of the iceberg if you will! Now > he's on Miralax and feeling much better. > > Then we checked the thyroid and his TSH levels were high, but not scary > high - T3 and T4 were normal BUT he had all these symptoms of > Hypothyroidism - checked his anti-thyroid antibodies and they were off the > chart high!!! So he's now on Synthroid. > > We also have an ongoing low WBC count - finally saw the Hematologist a > few weeks ago. She's concerned and wants to know why he has the > Leukopenia. We go today to check thyroid levels for medication adjustment > if needed and for her to check some things out in his blood and study his > cells under the microscope. Bottom line for us: His ANC count is in the > 600's (absolute neutrophil count) - for normal healthy person it should be > around 1500! If it dips below 500 she wants to do a BONE MARROW BIOPSY! > I'm a bit nervous of what she finds today, she'll know something by > tomorrow. I " m actually off here in a few minutes to get from > school and head to the hospital for the draw. This time we are going > right to the Hem/Onc ward and having those nurses draw. > > As far as how to get the draw done. I can't tell you how much the social > story has made a difference for us. Before it took about 5 people. Now he > doesn't enjoy it, but he follows the pics and knows what's next. > IE: first the rubber band around the arm, then the stick, then the > tubes, then the bandaid, all done - MILKSHAKE!!! He's doing so much > better. He better get used to it as we'll be drawing blood AT LEAST every > 3 months with the thyroid til we get it straight and that doesn't include > the Hematology issues! > > You're doing the right thing to pursue it. I hope you can get the blood > draw and get some answers. Keep a log so you have a better idea of what > each day is really like and ask his teachers their observations as well. > Keep us posted, I know how you're feeling - a little scared! Hang in > there, > > > Jayne > Who's alot scared for the next bout of news!!! > > a wrote: > have two things first the great news is nathan got second place at > special olympics in the softball throw and in the 50 meter dash, yaaaaa, > then ofcourse he was treated to mcdonalds, lol > the second is im getting really worried about nathan, he always seems > sooo tired, and the doc is trying to get proper coding so we can sedate > him for blood draws, as this is a TASK as many of you parents know, He > wears his bipap well, and we notice no apnea while using it, so pressure > should be ok, but he continues to fall asleep at school and at home, goes > to bed around 9-10pm, and sleeps all night, has pretty much since he > started with the cpap, other than the occasional insomnia. He naps after > school almost daily. I figure its probably just thyroid, and hoping that > it will be as simple as needing some synthroid but after visiting dr > linshens (SP?) site im worried about his oxygen levels, maybe they are > getting low? or worse of all luekemia, it talked about the extreme fatique > and weakness, and infections, he has had an ongoing snotty nose for long > time now, but that is not unusual for him, and a few ear infx, too but is > also not unusual, even after mcdonals after > special olymics he slept the whole 30minutes home, fell asleep b4 we even > got out of the neighboring city where the olympics are held. Its hard to > get him out of bed, he puts his head down often and falls asleep at school > frequently, no fevers that any of us have noticed, just the great fatiue, > snotty nose and occasional moist cough, lung sounds clear to me and to > school nurse, but as a nurse that doesnt really mean anything iv had pts > b4 who sound clear to us but have pnuemonia never the less, the doctor is > aware of this and i keep notifying and she is trying to see about blood > draw but im at a loss of what else to do, any suggestions? should i try > his iowa city doctors? worried , shawna > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 In a message dated 4/27/2006 6:11:44 P.M. Eastern Standard Time, liz.desantis@... writes: Jayne!!! I can't believe this is happening to my man Mr. J. Do you uses Emelin creme? Emla.....I know it works like a charm because my older daughter tested it out for me when she had a draw. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Thanks, Donna!!! Re: SO, fatigue > > In a message dated 4/27/2006 6:11:44 P.M. Eastern Standard Time, > liz.desantis@... writes: > > Jayne!!! I can't believe this is happening to my man Mr. J. Do you uses > Emelin creme? > > > Emla.....I know it works like a charm because my older daughter tested it > out for me when she had a draw. > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 many hugs and prayers,!! I know im praying that its just nothing, maybe puberty, lol, maybe just thryroid, he has had them off a tiny bit in the past, so could be that, they are going to check everything, his blood draw under conccious sedation will be the 4th at 8am. I know waht you mean about the constipation, nathan has been taking miralx since around age 9, and it has done wonders he even became potty trained after being on this for a few weeks. I will pray for jackson that he is ok!! many hugs shawna Re: SO, fatigue > HI a, > First of all - Congrats to on his SO honors - that's so exciting. > I can't wait til is involved in SO - I guess that'll happen next > year when he's 8! > > Secondly, Can totally relate to the worries about lethargy. We've been > deep in that since the 1st of the year. What we found: > > Massive constipation that I didn't even know was there. Found it on an > X-ray. He'd been having BM's but was struggling more to get them out. > Turns out he was just letting out the tip of the iceberg if you will! Now > he's on Miralax and feeling much better. > > Then we checked the thyroid and his TSH levels were high, but not scary > high - T3 and T4 were normal BUT he had all these symptoms of > Hypothyroidism - checked his anti-thyroid antibodies and they were off the > chart high!!! So he's now on Synthroid. > > We also have an ongoing low WBC count - finally saw the Hematologist a > few weeks ago. She's concerned and wants to know why he has the > Leukopenia. We go today to check thyroid levels for medication adjustment > if needed and for her to check some things out in his blood and study his > cells under the microscope. Bottom line for us: His ANC count is in the > 600's (absolute neutrophil count) - for normal healthy person it should be > around 1500! If it dips below 500 she wants to do a BONE MARROW BIOPSY! > I'm a bit nervous of what she finds today, she'll know something by > tomorrow. I " m actually off here in a few minutes to get from > school and head to the hospital for the draw. This time we are going > right to the Hem/Onc ward and having those nurses draw. > > As far as how to get the draw done. I can't tell you how much the social > story has made a difference for us. Before it took about 5 people. Now he > doesn't enjoy it, but he follows the pics and knows what's next. > IE: first the rubber band around the arm, then the stick, then the > tubes, then the bandaid, all done - MILKSHAKE!!! He's doing so much > better. He better get used to it as we'll be drawing blood AT LEAST every > 3 months with the thyroid til we get it straight and that doesn't include > the Hematology issues! > > You're doing the right thing to pursue it. I hope you can get the blood > draw and get some answers. Keep a log so you have a better idea of what > each day is really like and ask his teachers their observations as well. > Keep us posted, I know how you're feeling - a little scared! Hang in > there, > > > Jayne > Who's alot scared for the next bout of news!!! > > a wrote: > have two things first the great news is nathan got second place at > special olympics in the softball throw and in the 50 meter dash, yaaaaa, > then ofcourse he was treated to mcdonalds, lol > the second is im getting really worried about nathan, he always seems > sooo tired, and the doc is trying to get proper coding so we can sedate > him for blood draws, as this is a TASK as many of you parents know, He > wears his bipap well, and we notice no apnea while using it, so pressure > should be ok, but he continues to fall asleep at school and at home, goes > to bed around 9-10pm, and sleeps all night, has pretty much since he > started with the cpap, other than the occasional insomnia. He naps after > school almost daily. I figure its probably just thyroid, and hoping that > it will be as simple as needing some synthroid but after visiting dr > linshens (SP?) site im worried about his oxygen levels, maybe they are > getting low? or worse of all luekemia, it talked about the extreme fatique > and weakness, and infections, he has had an ongoing snotty nose for long > time now, but that is not unusual for him, and a few ear infx, too but is > also not unusual, even after mcdonals after > special olymics he slept the whole 30minutes home, fell asleep b4 we even > got out of the neighboring city where the olympics are held. Its hard to > get him out of bed, he puts his head down often and falls asleep at school > frequently, no fevers that any of us have noticed, just the great fatiue, > snotty nose and occasional moist cough, lung sounds clear to me and to > school nurse, but as a nurse that doesnt really mean anything iv had pts > b4 who sound clear to us but have pnuemonia never the less, the doctor is > aware of this and i keep notifying and she is trying to see about blood > draw but im at a loss of what else to do, any suggestions? should i try > his iowa city doctors? worried , shawna > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Thanks a. So he's not on any thyroid meds already right? I'm glad you were able to get the labs set up with sedation, I hope it goes well and that you don't have to wait long for you results. Miralax - the breakfast of champions! For kids on the " go! " Keep us posted a, Jayne greens4pak wrote: many hugs and prayers,!! I know im praying that its just nothing, maybe puberty, lol, maybe just thryroid, he has had them off a tiny bit in the past, so could be that, they are going to check everything, his blood draw under conccious sedation will be the 4th at 8am. I know waht you mean about the constipation, nathan has been taking miralx since around age 9, and it has done wonders he even became potty trained after being on this for a few weeks. I will pray for jackson that he is ok!! many hugs shawna --------------------------------- Yahoo! Mail goes everywhere you do. Get it on your phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 right no thryroid meds as of yet, just miralax, prilosec, concerta, and aricept, and we are going to try weaning him off the concerta this summer as of june 1st we cut his dose in half for a few months and then half again, and then walaa, im hoping that it goes well. shawna --------------------------------- Yahoo! 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...
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