This will probably be long, but I desperately need some help.
My son will be three in January. I am going to start with his history before the main problem. He was healthy when he was born and when he was about 3 months old, he started having allergy symptoms, runny nose, chest congestion, etc. His doctors put him on a nebulizer and singulair. They diagnosed him with asthma, although he's never had an asthma attack in his life. Just gets chest congestion. He gets sick quite a bit. Sinus infections, colds, stomach viruses. I am a stay at home mom, so he has never been to day care in his life, and we don't go out too often. I also have a one year old daughter who is perfectly healthy.
In May 2008, when my son was a little over two, he developed a high fever. It was about 104. He had some vomiting the first day or two with the fever. I took him to the on call doctor who was new at his ped's practice. She dismissed it as a virus. On the second day he was showing signs of dehydration and was very lethargic so I took him back. Still, she said it was just a virus. When I took him that second day, we also noticed he had some petechiae around his mouth. He was deathly sick the rest of the day and night. The next day his temperature was 105. I took him to the ER this time instead of the doctor. He was very dehydrated at this point, and they tried to IV him once and gave up. They sent us home. Also at this point, since the day before they had been giving him tylenol suppositories because he couldn't eat or drink. His body was now covered in petechiae, head to toe. He couldn't stay awake. His fever wouldn't go down. He hadn't been vomiting anymore as he was so dehydrated. I took him home from the ER and after three hours I took him back to his pediatricians office. At this time, I was petrified. I didn't know what was wrong with him but it wasn't a virus, and I wasn't going to leave the dr's office until they got him admitted into the hospital. They did.
We went to the hospital and the one ped kept insisting that my son had a virus. They ran bloodwork and kept giving him suppositories. Iv'd him. They still were not really trying to find out the problem. I had to get a hospital advocate into our room and told them I wanted to transfer to a children's hospital 6 hours away as I was afraid he had meningitis or something. About that time, that ped walked in. I told her how I felt. They said to hold on for a bit and if I still wanted to transfer him, they would. Well, at midnight that night, the ped came running in the room holding her chest. She said she had gone home and done some research. She said that an ICU doctor was on his way, that she thought my son had Rocky Mountain Spotted Fever. He had no tick bite, no tick bite spot, nothing to suggest a tick bite, but at the time I didn't know what RMSF was.
The ICU doctor came in and assessed him and immediately transferred him to ICU to do a spinal tap. They sedated my son for this. The spinal tap was normal....no meningitis. They started him on IV doxycycline. I was terrified. I did some research on my laptop I had brought with me, and I knew the outcome might not be good as it had been 5 days since he first got sick. Within about 12 hours of having doxycycline, his fever broke and he was a different kid. I also should mention that during all of this, my son's face was very very swollen and his lips were huge and split open all over and he complained very much of mouth pain. He spent the next few days recovering. He had been iv'd and poked so many times, his veins kept collapsing and they had to redo his iv often. After 5 days, they talked of discharging him and continuing his doxycycline orally. He had also been taking nystatin orally for his mouth. He had also previously been on some different antibiotics as well. Well, some tests came back and showed he had mono, adnovirus, and strep throat also. They were still going to discharge him.
The night before discharge, I noticed a few blisters on his IV hand. I asked them to remove the arm board and I was horrified. Under his armboard, his arm was covered in blisters. The next morning, his whole entire body was covered in blisters...even on his ears. They immediately stopped all meds and started running more tests. They checked his heart for fear of kawasocki's (sp?), did a skin biopsy, blood tests, a tzanck test. All of them normal. The skin biopsy just showed erythema bullous multiforme. The blood work showed elevated levels and decreased levels of various things I don't remember 7 months later. They finally discharged him after 9 days in the hospital without a clear diagnosis. The only thing the ped could think of was that his body had a weird reaction to all of the different things wrong with him.
A week or two later I called to get the RMSF results. They had never sent them off, so they did a titer which later came back negative. We were back at square one. No one knew what had been wrong with him. About 3-4 weeks after discharge from the hospital, his hand blistered up again. It became infected looking and they cultured it. It was positive for MRSA. They put him on antibiotics and it went away after a week or two.
A week or two later, it came back again in the same place. Again, positive for MRSA.
At this point, I was fed up with all of the doctors in this city, as he had seen an immunologist, dermatologist, nutritionist, cardiologist, and pediatrician, and NO ONE had any idea what was wrong with him or what is causing this staph infection to keep coming back.
I took him to Vanderbilt Children's hospital in Nashville in August to the ER the next time it broke out. They did a bacterial and viral culture and sent us home. Both came back normal and they scheduled an appointment with a pediatric dermatologist. When the pediatric derm saw my son, he said immediately that he definitely thought this was a recurrent staph infection. I showed him pictures of my son's skin from the hospital, and over the course of the last few months.
His diagnosis was Steven Johnson Syndrome. He thought my son had SJS for whatever unknown reason. Could have been the mono, could have been a medicine as simple as tylenol. He then said that he thought my son had contracted staph as a secondary infection to SJS while in the hospital. He ordered me to never let my son take tylenol or sulfa based medications again and we started a rigorous staph erradication procedure. He put my son on clydomiacin and bactraban. Everyone in the family put bactraban in their noses 2 times a day for 7 days. We also bathed my son in bleach and soaked his hand in domeboro solution. The infection went away.
Then it returned. The derm said he wanted us to repeat this procedure, and if it returned again, he wanted us to see an Infectious Disease specialist.
It returned again. This last time it came back a few weeks ago, it was on his opposite arm as well. As always before, it had been confined to his left hand on his 4th and 5th finger and palm. They cultured it and it was negative for staph. The dermatologist said that it might not always be positive on a culture because the staph could be in his nose or rectum and causing the reaction on his hand but not be present in the fluids in his hand. The doctor was at a loss now.
So, we got in to see a pediatric infectious disease specialist. He said it was not normal for someone's body to not be able to fight infections like this. I also informed this doctor, that since my son was in the hospital in May, he gets sick and stays sick constantly. He always has diarrhea, he has had vomiting bugs, sinus infections, colds, something different every week. Sometimes his sister gets it, but not often. He said he wanted to find out why my son's body couldn't fight the infections. He looked at the tests run in the hopital and said he wanted to check my son's white blood cells. He said that we might end up having to see an immunologist again as well. Mind you, we found an ID dr in our area so we didn't have to drive 6 hours everytime he needed to be seen, because as you can imagine, it's not easy with a 1 year old and a sick 2 year old. So, he had my son's blood drawn and said the results would be back in a week.
A week went by and I called to see if the results were back yet. They weren't. I asked the nurse specifically what test they ran, as I wanted more info to look up anything I could find to know my stuff when I talked to the dr. She said they had run a neutrophil oxidative burst test.
I looked it up. It tests for Chronic Granulomatous Disease. I got really scared. The articles written about CGD could have been written specifically about my son. There is no known family history of this though, and this is a genetic condition.
I called back 2 days later when I had not heard from them. Still no results. The nurse told me she had asked the dr about the test and he said it would be in the next week. She told me not to worry.
The next week, which was last week, I received no phone call.
I called today. The nurse said they had just received the results and that the dr. was on vacation until next week and couldn't read the results. WHAT?!?!
Here it is 3 weeks later, and it will have been a month when i know the results, and the test is time sensitive. It had to have been performed within 48 hours. Why did it take 3 weeks for the results when everything I have read says they report within 2-3 days after the test is run?
What if it is not CGD? They are gonna do more testing, but for what? They are grasping at straws. They none know what they are doing!!!!
If you have made it this far, thank you. Please, please, please, someone help me.