Our story starts 20 months ago. My then 8 yr old son start running mid grade temps ranging from 100.3 to 102 these temps last for 2 weeks before starting to climb higher, for the next two weeks he ran 104-104.5 with tylenol and ibuprofen being alternated around the clock, Doc's office visits every 2 days during that time span, finally i got told they had no idea what was causing my son to run fevers so high, they called it " Fever of Unknown origin" On may 23rd my son woke up at 6:30 am crying, i asked him what was wrong, he stated he needed to go potty, but could not move his legs to get to the bathroom, by 7:30 am we were admitted into the local hospital. Where specialist after specialist came through my sons hospital room. None could tell me what was wrong with him. The two main symptoms other than the fever were diffuse and colicky belly pain, and joint pain in legs and arms. They did lab testing to discover his CRP came back @15.3 Sed Rate of 100. Moderate titer AntiNeuclear Antibody 1:160 nucleolar. and 1:320 speckled pattern. but additional testing came back negative. Discharged on 6/1/11 home, with docs note excusing him from the next 6 weeks of school due to fact he was sleeping 18 hours a day , which then did an abrupt turn around and then he was sleeping 3 hrs daily and having insomnia the rest of the time, this lasted for approximately 3 months. Then we tried to regulate his sleep cycle with Doxepin Hcl. after 2 months on the med, his sleep pattern leveled out for about 6 months, then the insomnia returned. During this time frame...the belly pain and joint pain did not resolve. In the past 20 months he has had recurrence of high grade fever 4 times, Finally on Nov 26th 2012 we got a diagnosis of " Periodic fever syndrome" But the doc out of Dartmouth felt there was more going on that he could not attribute to the PFS. So we were sent back off to the lab for further testing. On 12-4-12 i got a return phone call from the doc's office stating one of the panels drawn came back with a high...The igg4 with a value of 113.3. Again we were sent for further testing with Amylase/lipase panels and a high sensitivity( Cardiac ) drawn. We have a appt set up for 12-14-12 to go over all the findings, Its so very hard for me to be patient and wait for the 14th to arrive. I have been doing research online regarding Autoimmune Pancreatitis. I am noticing no case studies done in my sons age group, treatment is corticosteroids/steroid saving therapies, over a prolonged period of time. In all the research i have been reading there is no data regarding long term prognosis , or quality of life in persons with this disorder. Another concern of mine is if he has to go on a steroid long term, what about schooling? I am ambivalent about him attending school while his immune system is being basically " Shut off" . This is a child who seems to contract everything and anything that might be going around his school. In the last year he has been treated for Bronchitis...which turned into pneumonia, strep throat, Oral sores on his tongue, cheeks, gums and throat! Various cold /virus's. I am afraid of him attending school on a steroid and contracting something while on it, and his body being unable to fight it off. Also...he was diagnosed in 9/2008 for lyme disease with the following , Initial Lyme Western blot from 9/08 was positive for 3 of 3 IgM bands (23, 39, 41) and only 3 IgG bands (23, 30, 41). Repeat Lyme Western blot from 10/08 positive for 3 of 3 IgM bands (23, 39, 41) and 4 positive IgG bands (18, 23, 39, 41). Lab from 12/9: Antinuclear antibody negative. Sed rate 14. WBC 11.26. Hemoglobin 12.4. Platelets 443K. Any information anyone could provide me with regarding any of this would be greatly appreciated!
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