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Post by justinsmom on Jan 5, 2007 12:08:50 GMT -5
Sorry but I'm in the same boat, our oldest just got diagnosed with Sleep Apnea and got her CPAP she's 14 and non DS and we still can't get her to use it GRRRRRRRRR. My dad has one too but his is sitting in his closet double GRRRRRRRRRR. The prongs for the nose hurt the mask won't stay put, she would wake up with it on her forehead. We are still trying out different masks and different size nose pieces, there has to be an easier way other. We've tried the stuff to keep the nose moist, her CPAP has a control to regulate the temp of the air or humidity.
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Post by justinsmom on Oct 22, 2004 18:02:57 GMT -5
Justin had his out when he was 2 yrs old. He was hospitalized numerous times in one year because of pneumonia which in turn triggered his asthma. He also had mild sleep apnea which showed up during the sleep study. He stayed over night and was back to his old self the next day . He has not been hospitalized once since, he does still get colds but they are not as bad as before and his sinuses are alot better also.
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Post by justinsmom on Oct 10, 2004 16:21:05 GMT -5
Dolly, Justin has not been tested but has allergies our oldest was tested about 3 years ago, basically allergic to dust, ragweed. etc. Justin is on allergy meds and asthma meds. You are right about the carpeting and duct cleaning, also you may want to get mattress and pillow covers, they have special ones for allergies, also our pulmonolgist is always preaching to the girls about keeping the closet doors SHUT and NO stuff animals, no window blinds, and curtains, we have valences only and keep them washed also the allergy filter for the furnance. Justin had also had the CT done to check his sinuses, but have to admit since the T/A he has done EXTREMELY well as far as the nasty nose Good Luck
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Post by justinsmom on Sept 12, 2004 1:54:09 GMT -5
Logan will be in our thoughts and Prayers. Justin was the same way he failed his first two hearing tests and no history of ear infections unless you count his very first one which was in both ears the day of his hearing test, T-tubes were put in when he had his T/A. They are both out now and no problems knock on wood, they lasted 2 yrs for us.
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Post by justinsmom on Oct 13, 2004 8:35:58 GMT -5
Justin was failure to thrive the first year but then we had his thyroid levels checked and that was our problem he has hypothyroid and takes levoxyl once a day since and now he is 4 weighs 42 lbs and is 43 inches tall.
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Post by justinsmom on Jul 12, 2004 13:17:35 GMT -5
First off Prayers headed out. As for the chest Justin did/does have ASD/VSD, ASD closed on it's own but still has the VSD. He has always had what they called a pigeon chest and still does even without any cardiac surgery but as he is getting older and bigger it is getting a little better but it still is very noticeable. My thinking on this if it isn't causing pain/discomfort or other complications then we continue to say it is just Justin sticking out his chest and showing everyone he is proud as a peathingy , but we will have to check when sports comes around I'm not sure what will happen if he would to get hit there or if the solution is as simple as a chest protector we will see.
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Post by justinsmom on Jul 12, 2004 13:10:21 GMT -5
Hugs and Prayers headed Noah's way and your family. Justin has VSD and as of 2 yrs ago his ASD has closed on its own. We were told that several times within a month period but as someone has mentioned before our kiddos are the strongest fighters and I strongly believe God watches over our little ones Personally. Although Justin was almost a month early he stilled weighed in at 8lbs 11oz, the question about repairing his heart was thrown out several times but after many many tests and retests it all came down to his pulmonary function which was very bad to say the least. They would give him medications to fix one problem which in turn ended up causing another problem from needing 2 blood transfusions to kidney complications. It seemed no matter what they did something else would go wrong. Also I have to agree with what someone else said with regards to questioning medical advice, we did many of times, right down to giving a resident a crash course in humanity 101, bedside manners 101 and a reality check, this happened while we were down stairs finally getting something to eat only to return and find Justin laying in the crib with blood from end of it to the other and the curtains covered in blood it seems they were attempting to draw an ABG- Arterial Blood Gas and just kept poking him until they got what they came for, well after seeing that and about to just grab him and get him out of there I went straight to the nurses station and told them to get the resident down here ASAP, aftrer informing her she was no longer to go near our son she had the nerve to tell me well I will be performing more ABG's on your son I'm all there is, my response this is a teaching hospital filled with compassionate, more qualified, more professional residents then yourself and that is who will be performing his tests. Case closed and we never saw her again and needless to say I had his nurse who we knew be with Justin everytime we were not able to and she watched them like a hawk. Oh by the way that resident did get a write up in her file Ok I'm rambling now but just wanted you to know we also have been there and Prayers are definitely headed your way, don't be afraid to question them
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Post by justinsmom on Jul 5, 2004 10:38:09 GMT -5
Welcome Diane, hmmmmm just read this one and now wondering if this is what Justin is just getting over. After 2 trips to the ER in 2 nights and 1 diagnosis of oh yeah this is a good one gagging with red throat grrrrrrrr and the last one the ever famous a virus. He had a low grade fever the first night and gagging, the next night covered in a rash and one vomitting episode and no fever, I just kept him cool only a diaper and today it's almost gone. But have to tell ya I was a little nervous for a while it kinda looked like Scarlet fever and he still has his VSD.
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Post by justinsmom on Jun 5, 2004 11:26:17 GMT -5
Dolly all our kids get the pneumococcal vac and it has worked great for Justin and with no side effects.
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Post by justinsmom on May 29, 2004 11:27:16 GMT -5
Hi Lindy, for the sleep study the hardest part is trying to keep the kiddos from pulling off the electrodes , Justin was 2 when he has his and in the midst of the terrible 2's, the tech monitors breathing, heart, and brain activity during sleep. We also opted for Justin to sleep in a regular bed with dear ole dad rather than the crib. We had to be there around 9pm and by 6am. The time depends on when the child falls asleep and if they have enough data during that time. As for the Atlantoaxial Instability I can't believe no one bothered to mention this after a year . Don't have any experience with that one Justins' x'rays have been fine so far but a some here have and I'm sure they will post up soon.
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Post by justinsmom on May 24, 2004 12:18:38 GMT -5
Justins' sister use to get a fever for no reason, some days she would be fine and then poof there it was again, so afte bugging the doc we finally found out it was a sinus infection which was also the reason for her headaches.
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Post by justinsmom on May 21, 2004 8:10:08 GMT -5
Hugs and Prayers Vicki.
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Croup
May 6, 2004 12:48:08 GMT -5
Post by justinsmom on May 6, 2004 12:48:08 GMT -5
Hi Debby you just described Justins' first 2 years, for him it was always pneumonia which in turn triggered his asthma so off to the hospital for at least week stay because of the low sats. We use either prednisone or orapred supposedly the orapred tastes better. I have to say it does get better, also is it a possibility to have your son evaluated by a pediatric pulmonologist. As for the bags under his eyes that could also be a sign of allergies which in turn is triggering the rest just a thought I know for us here that is what does it. I also know the feeling we didn't take Justin anywhere between Oct and May. The steroids do do the trick, but from what you are describing it sounds just like the road we were on, Justin at age 2 had his tonsils and adnoids out which really gave his asthma and allergy meds the extra boost they needed prior to that he was hospitalized 6 times from Jan. to May with pneumonia and exaerbated asthma. I do believe you should try to have him evaluated by a pulmonologist to rule out allergies and asthma or if need be to get him on the correct meds so he won't have to keep going through this good luck and keep up posted and Prayers headed out for your little guy and if you have any questions let me know, we have totally been exactly where you are and it does get better as they get older and more mobile.
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Post by justinsmom on Apr 24, 2004 21:24:28 GMT -5
Justin was forever hospitalized with pneumonia which in turn exaerbated his asthma, just in 2002 alone from Jan. til May he was hospitalized 6 times and we are talking 1-2 week stays. I wasn't until he had his T/A and tubes in Oct 2002 that we had finally got the little kick in the pants the asthma meds needed, so far knock on wood he has not been hospitalized since, although yes he has had pnuemonia but we now have the tools to nip it in the bud, we start with steroids first sign of a cold and off to the docs for a script of Zithromax and he doesn't get as bad as he did before.
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Post by justinsmom on Mar 28, 2004 13:45:35 GMT -5
Sue, Justin and Ashley are both on Singulair and have been for quite sometime now. For us it works great, good luck.
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