Continued from 1st post
So, let me fastforward to present day. My son is 5 1/2 now. When this first started his flareups would last about a week, with 3-4 weeks in between and the blister on his hand was confined to one blister or a small cluster. Over the past 3 years, the remission of the flareups got fewer and further between, and the blistering now takes up his entire palm and back of his hand, with no break. He is constantly in a stage of healing and breaking out with no break in his symptoms.
He just had that first appointment with the ped. rheum. 2 weeks ago.
I left out the list of symptoms until this part, so my story would not be too confusing. I also want to add that during the past 3 years, it has been like fighting a war with these doctors. To get them to continue testing or do anything has been like pulling teeth. I have been met with resistance ever since that first doctors appointment after my son's hospitalization 3 years ago. If I had listened to the first 2 doctors and taken their word, my son would have been misdiagnosed with herpes and that would have been the end of it.
Here is what my son has been experiencing for the past 3 years since his hospitalization:
Blistering on one hand (duh...I'm sure you are tired of hearing that one by now) (Very Painful, not itchy, not burning)
Eye pain and sensitivity to light
Joint, muscle and bone pain (hard to pinpoint when being described by a 2-5 yr old) in the legs and arms, so severe it causes insomnia
Stiffness in the legs, especially in the mornings or after sitting for 30+ min
Numbness (?) in legs...he says his legs are still sleeping sometimes after he wakes up
Severe abdominal pain, to the point he doubles over and starts screaming and/or crying
Nausea and random vomiting (possibly from the abdominal pain)
Periods of lack of appetite, followed by periods where all he does is eat
Lack of balance (When he has a flareup, he will fall no less than 20 times in one day, tripping over his own feet)
Very low immune system (constantly sick with a runny nose or virus. He has never been in daycare, and is always at home with me unless he visits my mom for the day. 75% of the time, if we even go to Wal-mart, within the next couple of days he will be sick with a cold or virus)
Extreme irritability (I used to could tell when his hand would break out based upon how irritable he would become in the 2-3 days before the breakout) (He becomes extremely moody, and is overall a different child)
Most of the time he is very hyperactive, but he will go through periods of extreme fatigue and he will be really pale during these periods.
Low grade fever off and on. His normal temp is around 98.2--low grade is 99.4-99.6.
So where was I...oh yeah...given his list of symptoms, it has taken us 3 years to finally get real, actual tests done that have nothing to do with a dermatological disease.
At his appointment, I went over his entire medical history with the Dr. The doctor asked me some very specific questions (I'll get to that in a moment) and seemed very concerned. He told me that he cannot guarantee an answer, but he will try his best and also that if within the next couple of months, we do not find out something, he will refer my son to a gastroenterologist in the mean time to figure out the stomach issues since they are especially bothersome to my son. The Dr. examined my son, his joints, flexing them, etc.
After we went over his symptoms again-The questions- He asked if anyone in our family had a history of lupus or RA--yes (Great aunts and 3rd cousin). He asked if my son had ever had seizures-No. Weightloss-No (My son is tall for his age, but as skinny as a rail, even though he was born at over 10 lbs!), Sensitivity to sunlight-No (Had phototherapy testing done for 3 days at the derm--was normal), Mouthsores-None that I'm aware of, Does he drink alot-Yes. We have always joked about how much he drinks.
After the ?'s, the doctor said he was going to do some bloodwork. I'm kicking myself now for not asking specifically which tests, but he did mention JRA, Lupus, Crohn's and Cealiac. They took about 7 tall vials. The doctor put my son on Naproxen twice daily, first thing in the morning, and right before bed and made us an appointment to come back in 4 weeks (this doctor is only in this office one day a month--hence the 8 month waiting period). He told me the next time my son has stomach pains, for me to gently push in on his stomach to see if it's tender and if it hurts him. I have done that, and it does. I felt horrible afterwards for even doing it because I barely put pressure and it caused my son great pain.
So yesterday made day #17 on the naproxen. He has been sleeping through the night better than he has in 3 years, has not woken up 1x with pain. During the day, he has still been complaining of leg pain, and he has still been experiencing the abdominal pain. Sooo, yesterday, my son was with my mom and dad and my mom called me around lunch time and told me that my son had just peed and it was hurting him and that it had taken him 3 hours to go, that he had been needing to go and couldn't. I looked up the naproxen to read the side effects again, and difficulty and painful urinating was a rare side effect. I rushed my son to the ped. Ughhh I hate drs here. Since his ped rheum is 3 hours away and not in office for another 2 weeks, I knew I needed to take him to the ped for a urine test before I even called the rheum.
Right off the bat the ped. was upset that the rheum had not called him to tell him about our appointment...I was like...really??? The ped had a sour attitude the entire time. The urine came back fine, no infection, no protein, no blood. He pushed on my son's lower abdomen and it hurt him. The ped then told us to stop the naproxen if we wanted because "it's not a cure for anything, all it does is treat the symptoms"...I was fuming...this dr really was clueless. Of course it was to treat the symptoms, because they don't know what's wrong with him!!
When I left, I called the rheum and left a msg about what was going on. About an hour later, a nurse called me back to tell me that the dr. wants him to stop the naproxen immediately, they are putting him on meloxicam, but we are to wait 5-7 days before starting it because the dr. wants his pain level back to normal and the naproxen out of his system. So at this very moment, my son is taking nothing, but will start the meloxicam Saturday.
Okay, If anybody is still reading this, I really appreciate it. There is so much to put out there, and I get lost sometimes trying to put it all down. The reason I am here, is because I have spent the last week, every spare moment I have, reading about autoimmune conditions, the ones the dr. mentioned, and specifically lupus. Also, after I got home and read about lupus, I realized that most of the dr's questions were asked specifically in regards to lupus symptoms. After what I have read about lupus, I feel like I don't have one iota of a shred of doubt, that this is what my son has. I don't think he has crohn's or cealics or JRA. Lupus is the first condition that I have researched that everything fit together like a puzzle. All of the symptoms were right on with what I have read, even when I have read on several articles that SLE can be brought on by EBV, and that's when this all first started was after he was dx with EBV in the hospital. As much as I want an answer and a tx for my son to feel better, it is killing me that I feel deep down that there's no way it can't be lupus. I keep trying to reason my way out of feeling this way...the fact that my son was 2 when this started and 5 now, and a white male...the statistics are against it being this, but then I read some more and everything I read, it just solidifies in my mind that this is what it is--specifically the bullous SLE.
We go back in 2 weeks to see the results of the bloodwork. I don't know what it will show, or how to proceed with the dr. if the tests are normal and he wants to drop it. Should I push it with the dr. with my instincts? If the dr. were to want to move on to something else, should I just drop it? Do the symptoms sound to you guys like lupus as much as they do to me? I am having a hard time finding anywhere online to read a first hand account from a parent of a young boy that has lupus. All I have been able to find are medical studies, and articles, etc. Regarding bullous SLE, I read that there is a med. called dapsone that is shown to clear up blisters in 1-2 days and keep them gone as long as you take the meds. I was thinking about asking the dr. if we could try that as long as there will be no horrible side effects, just to see if it works. I don't want to scare this dr. off by being too pushy, yet I cannot sit around for another 3 yrs and watch my son suffer with nothing being done. He has been sick now longer than he has been healthy. He also starts kindergarten in 3 weeks. Thank you so much for taking the time to read this, and any insight, advice, answers, anything will help.