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Autoimmine Pancreatitis

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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Avatar universal
Hello, I read your post and feel so sorry for your son's pain, the one item I noticed, was the fact you said he tested positive for Lyme disease, this disease is diblitating in more ways then just the duration of the disease itself, it seems it can cause chronic pain and nerve damage after the disease itself has gone away. We all have a coating on our nerves, it is called the "Myelin Sheath" Consider it like the insulation on an electric wire, when this coating is detroyed, the nerve becomes inflamed and begins "miss Firering"  causing severe chronic pain and a decrease in range of motion, This inflamation causes severe "Neuropathy" or Nerve Pain. The condition is called "Demyelinating Neuropathy" It can be diagnosed with Nerve Conduction Velocity and Electromyography Examinations, Performed by a Neurologists. There are many diseases that cause this condition, Lyme disease being one of them.Others are Diabetes,Thyroid disease, with an auto immune condition that causes the bodies T Cells do not recognize and attacks the nerves, causing damage to the coating. Anytime you have a condition in the body that is inflamatory, and the bodies defense (Immune System) is activated to fight it, the bodies temperature rises during this battle. I was diagnosed with this condition, the cause of this condition in my case could be one of two an auto-immune Thyroid Disease, (Hashimoto's Thyroiditus) Post Polio Syndrome, Due to the fact that I had polio at seven years old. As long as the source of the nerve damage can be determined and treated, the coating will grow back and the Neuropathy will stop. The grow back period takes longer than the time of destruction, so the cause must be cured before healing will occur. These are just my thoughts on the cause of the recurring fevers your son is going through. I spent my childhood healing from paralysis and physical therapy and can sympathize with yor son and family. I pray you find the cause of his issues and all go's well Best Regards FTB4
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