Let me start off by apologizing for how long this will be. I just found this forum today, and after reading some threads, decided to post because this forum is amazing. You guys are so helpful to one another.
I am going to start at the very beginning of my son's journey to give you all the information of what he has been through and where we currently stand.
My son was born healthy--over 10 lbs, on his due date. As a baby he didn't have any severe medical problems. He was on breathing treatments for a while when he was about 4 months old due to possible asthma, but that cleared up with the breathing tx. He had a couple of emergency room trips with some illness-stomach virus x2, strep throat, ear inf.
When he was 2 years, 3 mo. old, he became very ill. It was on a Friday, he started out with a runny nose, sore throat, and that night started running a fever. His fever got up to 103. Saturday morning I called his ped. (they do not work on Sat) and she opened the office so I could bring him in. She said it was probably viral and sent us back home. That day his fever would not break, he started vomiting horribly, his fever went up to 104, he became really lethargic. I called his doctor again Sunday. Again, she opened the office up and we went in. I told her something was seriously wrong. He had never done this before. At this point, he could barely even hold his head up. He would not drink, eat, etc. He also had a peticheal rash on his face. She still insisted it was viral. She got some gatorade and a syringe and tried to force him to drink it against my wishes and he vomited all over her. She wrote a prescription for phenergan (sp?) and sent us back home. That night he became even worse, so the next morning I took him to the ER. While we were at the ER they tried to IV my son for dehydration. After 3 people tried unsuccessfully, they sent us home. When we got home, I laid my son down on the couch and for 3 hours he barely moved. I got him up and took him AGAIN to the ped's office. I demanded that they admit him to the hospital because something was seriously wrong. This was going on 4 days of a 104 temp, he was extremely dehydrated, his mouth was starting to hurt, his throat hurt, and he was extremely lethargic.
When they admitted him to the hospital, they put him on an IV and tylenol suppositories because he could not keep anything down. They ran a strep test and EBV test. His fever still was not breaking. The next morning (Tuesday), I asked the pediatrician why they were not doing anything besides giving him tylenol?? Why were they not running other tests??? I ended up calling a hosp. advocate to demand a transfer to another hospital. While the hosp. advocate was in there, his ped. came back in and I told her what I had just told the ad. Also by this time, my son's mouth had sores all over and in it and his entire face was swollen and he didn't even look like himself.
Later that night, at 1 a.m., his pediatrician flew into the room holding her chest. She said she had been up reading all night and found something and didn't even put on a bra before she left the house. She said that an ICU doctor was on his way in and they were going to take my son for a spinal tap, because the doctor thought he might have Rocky Mountain Spotted Fever. She began to explain it to me and that they didn't have time to wait on RMSF test results because the fatality rate rises so high after the 5th day. We were in the wee morning hours of day #5. They took him for the Spinal tap which came back normal, and immediately started him on an IV of doxycycline.
(For those that don't know what RMSF is--its a often times fatal rickettsetial disease that happens from a tick bite. (My son had no evidence of a tick or a tick bite). Doxycline is a tetracycline drug used for acne and the only tx for RMSF, however doxycycline is not to be given to children under 8 because of side effects (permanant discoloration of permanent teeth).
Within 12 hours my son's fever was gone. He transformed into a totally different child. He progressed so nicely that they moved him out of the ICU 1.5 or 2 days later (I can't remember exactly when as so much has happened since).
By Friday, they had received the results back from his strep and EBV tests and he was dx with EBV, strep throat, and adenovirus. He was doing so well on the doxycycline that they were possibly going to discharge him the next morning and stop the doxycycline 5 days early.
Friday night and into Saturday morning, my son suddenly developed blisters over his entire body...everywhere including the tops of his ears, down to the soles of his feet. They immediately took him off the dox. took him for an ultrasound for Kawasaki's, did so much bloodwork over that weekend that his veins started to collapse. They were having to draw blood from the tops of his feet. He was having abnormal bloodwork from his liver, among other things. They lost so much bloodwork and didn't get it where it was supposed to be in time, it still makes me fuming mad to this day. The next week, they did a biopsy on one of the blisters and it came back erythema bullous multiforme. They also put him on different antibiotics. They never did dx what caused the blistering, what made him so sick to start with, and lost his bloodwork for RMSF. They discharged him from the hospital after 9 days with his diagnosis stating EBV, strep, adenovirus, and possible RMSF.
Over the next week after he was discharged, the blisters started drying up, scabbing over, and finally went away.
Three weeks later, on the palm of his left hand he got the exact same blister. I took him to the ped., they cultured it--it was neg. The doctor said it was herpes, even though his bloodwork from the hospital was neg. and the biopsy was neg.
I took him to a derm. in the city I live in, they tried a course of acyclovir, with no results, put him on allergy meds, with no results, topical steroid cream, with no results, did another herpes test--negative.
The blister ended up going away. Three weeks later...it was back. This time, I took him to the ER 6 hours away at a huge children's hospital. They cultured it, etc. They got him an appointment with a ped. derm there. We ended up seeing this ped. derm for 18 months. During the 18 months, the blisters kept coming back over and over again on the same hand, along with a whole list of other symptoms. They did numerous tests and 2 biopsies, and my son also saw an infectious disease doctor back in my city. They could not figure out what was wrong and gave up...
So, I took him to the next biggest hospital, but this time in another state. He got a ped derm there that had just transferred from NIH. They, too ran their own panel of tests for dermatological diseases and did a biopsy. After 4 months with this doctor, she said she thinks my son has an autoinflammatory condition and that the blisters are secondary to that condition. She sent us back to my son's ped with a list of bloodwork that she wanted run. When we took that to the ped, he said the bloodwork she wanted done was a joke. He said it was the most basic testing and that it would not help anything, so his office got us into a ped rheumatologist. They made his appointment for----EIGHT MONTHS LATER. Yep. 8 months.
Continued in next post (I was over my character limit)