Guest guest Posted August 15, 2009 Report Share Posted August 15, 2009 I think my son may have . We have been dealing with fevers every month. They usually last a 4-5 days at a time. We've been to the E.R. and the doctor so many times, because is fever gets really high. His blood work always looks normal except for his CRP level. We just got home today after spending 2 days in the hospital doing tests. He saw an infectious disease Dr. that tested him for about every virus and bacteria there is. All of them came up negative. His CRP was extremely elevated at 230 on Friday. Today when we were discharged it had dropped down to 125. They are referring us to an rhuematologist. Anyone else deal with high CRP levels? Is it possible to have without mouth sores? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2009 Report Share Posted August 15, 2009 Highly elevated CRP levels is what finally got us on the road to a diagnosis. At that point we were sent to see an Infectious Disease Specialist. Within 2 months we went through many tests to rule out other illnesses and ultimately we found out our daughter had . She did not (or we did not notice) mouth sores up to that point. The mouth sores became more pronounced later. I know it is probably not an easy time for you. I did find comfort in knowing what is was (even though no one really knows what it is). Up to that point we called it the " crazy fever thing. " Anyhow, hopefully you are on the road to figuring out the best way to help your son and your family. Finding this support group has helped me greatly. May you find the same. Best wishes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2009 Report Share Posted August 16, 2009 I am new also to this group as I said in my earlier message. My little girl, 15 months, does not have swollen glands or mouth sores during her episodes. She just gets recurring high fevers, stops eating and drinking completely, wakes up every 15 to 30 minutes and screams out in pain and then becomes very lathargic in between screams. Does not crawl or move during the epidsodes. This last for 3 days usually. One episode included labored breathing and extremely high heartrate (no pneumonia, asthma, or cold/virus was found). Some include rash all over her body. She almost always trembles throughout and vomits once at the highest temp peak. She has growth issues as well overall. Does anyone out there have a similiar story and a diagnosis of Periodic Fever Syndrome? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2009 Report Share Posted August 16, 2009 I am new also to this group as I said in my earlier message. My little girl, 15 months, does not have swollen glands or mouth sores during her episodes. She just gets recurring high fevers, stops eating and drinking completely, wakes up every 15 to 30 minutes and screams out in pain and then becomes very lathargic in between screams. Does not crawl or move during the epidsodes. This last for 3 days usually. One episode included labored breathing and extremely high heartrate (no pneumonia, asthma, or cold/virus was found). Some include rash all over her body. She almost always trembles throughout and vomits once at the highest temp peak. She has growth issues as well overall. Does anyone out there have a similiar story and a diagnosis of Periodic Fever Syndrome? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2009 Report Share Posted August 16, 2009 Hi, My son has a dx for probably and does not have mouth sores. It was explained to me they didn't always need to have mouth sores for it to be . My son for example presents with swollen tonsils and inflammed throat, tummy pain, fever and sometimes joint pain. He also complains his head hurts (I think that is sinusitis/allergies - probably not related). I saw Beth asking about tests results and I have been curious too about others tests results. My son has had a series of strep, urine and blood tests. Other tests were: CT scan for sinusitis (very large adenoids and full sinus infection) UA showed sugar (during 2nd day of fevering episode) High blood (same day as positive sugar in UA) Diabetes work up - negative (2 days after positive sugar in UA and high blood sugar - fever was a persistent during all tests) ESR 73 (taken taken during diabetes work up) ESR 4 (retaken 6 days later - fever had resolved) WBC 9.9 (taken during diabetes work up) WBC 8.8 (retaken 6 days later - fever had resolved) Other abnormal results: Lipase levels slightly elevated Borderline anemic Immunoglobin A slightly elevated The infectious disease doctor did a large battery of tests to rule out other diseases that can cause recurrent fever. He said his tests were fine. I am going to ask about genetic testing and the other immune disorder tests we didn't get when I see the Rhuematologist next to be sure we have ruled out everything. The infectious disease doctor we saw said the high ESR rate and it's quick return to normal were a big flag for ? Sound familiar to anyone? From what I read it looked like CRP can be related to the ESR rate and possibly blood sugar as well? Has anyone else had high blood sugar during a fever episode? Hope this helps and hang in there. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2009 Report Share Posted August 16, 2009 Hi, My son has a dx for probably and does not have mouth sores. It was explained to me they didn't always need to have mouth sores for it to be . My son for example presents with swollen tonsils and inflammed throat, tummy pain, fever and sometimes joint pain. He also complains his head hurts (I think that is sinusitis/allergies - probably not related). I saw Beth asking about tests results and I have been curious too about others tests results. My son has had a series of strep, urine and blood tests. Other tests were: CT scan for sinusitis (very large adenoids and full sinus infection) UA showed sugar (during 2nd day of fevering episode) High blood (same day as positive sugar in UA) Diabetes work up - negative (2 days after positive sugar in UA and high blood sugar - fever was a persistent during all tests) ESR 73 (taken taken during diabetes work up) ESR 4 (retaken 6 days later - fever had resolved) WBC 9.9 (taken during diabetes work up) WBC 8.8 (retaken 6 days later - fever had resolved) Other abnormal results: Lipase levels slightly elevated Borderline anemic Immunoglobin A slightly elevated The infectious disease doctor did a large battery of tests to rule out other diseases that can cause recurrent fever. He said his tests were fine. I am going to ask about genetic testing and the other immune disorder tests we didn't get when I see the Rhuematologist next to be sure we have ruled out everything. The infectious disease doctor we saw said the high ESR rate and it's quick return to normal were a big flag for ? Sound familiar to anyone? From what I read it looked like CRP can be related to the ESR rate and possibly blood sugar as well? Has anyone else had high blood sugar during a fever episode? Hope this helps and hang in there. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thanks Deborah! Our inf disease specialist thought ours was a recurrent viral infection (we went to him in the last ep ~July 18) but we have eliminated the big ones (epstein barr, CMV). We went to the ENT today and he talked about tonsillectomy with me but we are going to wait a while. Our ped has suggested getting a blood draw in the next couple weeks when she is (hopefully) well to compare the numbers. We will also hopefully get an appt with rheumatology soon. We haven't had a urine or any blood sugar tests done to my knowledge but my DD is anemic with hemoglobin at 9.7 - its been going down since Nov. We have been giving a supplement for a month with no change yet (but we did have a big blood draw). Our CRP was 73 and ESR was 50 during the last episode, with pretty normal white blood cells from what they said. I'll keep everyone posted on what we find out. This particular ep we are going thru has been rough 6 days with fever 103+. Last night she woke up sweating like CRAZY with a rectal temp of 96 (!!!) and this morning it was 103.2. This afternoon she fell asleep in the car on the way back from the ENT and was sweating like crazy when I got her out when we got home with her temp back in the 96 range under the arm. So we have the low temps too I am hoping this is signaling the end of this one!!!!!!!!!!!!!!!!!!!! Take care everyone, Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 Thanks Deborah! Our inf disease specialist thought ours was a recurrent viral infection (we went to him in the last ep ~July 18) but we have eliminated the big ones (epstein barr, CMV). We went to the ENT today and he talked about tonsillectomy with me but we are going to wait a while. Our ped has suggested getting a blood draw in the next couple weeks when she is (hopefully) well to compare the numbers. We will also hopefully get an appt with rheumatology soon. We haven't had a urine or any blood sugar tests done to my knowledge but my DD is anemic with hemoglobin at 9.7 - its been going down since Nov. We have been giving a supplement for a month with no change yet (but we did have a big blood draw). Our CRP was 73 and ESR was 50 during the last episode, with pretty normal white blood cells from what they said. I'll keep everyone posted on what we find out. This particular ep we are going thru has been rough 6 days with fever 103+. Last night she woke up sweating like CRAZY with a rectal temp of 96 (!!!) and this morning it was 103.2. This afternoon she fell asleep in the car on the way back from the ENT and was sweating like crazy when I got her out when we got home with her temp back in the 96 range under the arm. So we have the low temps too I am hoping this is signaling the end of this one!!!!!!!!!!!!!!!!!!!! Take care everyone, Beth Quote Link to comment Share on other sites More sharing options...
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