My youngest son got sick just after Halloween. We thought it was a flu bug. He missed school and work a few days, went back for a few days, and then got seriously sick again. The cycle kept repeating. Severe abdominal pain started.
During Christmas break, he got worse. He started throwing up blood and passing blood in his stool. We needed to change doctors because the one my son was seeing wasn’t covered by our insurance. We took him to a new primary doctor (PC) recommended by our insurance as knowledge about mental disabilities. His first comment was that he was just a general practitioner with little expertise in the subject.
Trying to find a doctor who sees adults with mental disabilities is practically impossible in this state unless you are on Medicaid. The PC doctor found out my son’s blood work was a mess. He had a dangerously low sodium level, blood sugars were sky high and dehydration was concerning, along with other abnormal blood levels. The doctor suggested it was from the medications he took for autism and anxiety disorder. He wanted to take him off them, even saying they might be able to reverse the “damage” that had been done. Talk about upsetting. But, something told me this wasn’t the case.
The doctor referred him to a gastroenterologist, and he did a colonoscopy and upper GI. They found ulcers in his esophagus, but nothing that could account for the stomach pain and illness. His symptoms continued, and we found he had a rash on his back. It had been there some time, but my son hadn’t said anything to us or the doctors. We returned to the PC doctor. He put him on short-term insulin and started pulling him off his autism meds. He didn’t know what the rash was and suggested it was dry skin. I was frantic.
My son’s sugars went even higher; his sodium lower. He couldn’t make it through a day of school. He was so fatigued and weak. The rash started to spread…and itch.
One day, when I picked him up from school because he was so ill, I felt prompted to take him to a neighbor who was a nurse. I drove straight to her house without calling. I knew her but not well. She opened her door and her arms to us. She listened to his stomach and said it was distended. She rubbed Calamine lotion on his rash. She gave him homemade jerky for the sodium. And most importantly, she suggested I get a medication review from a pharmacist. I did just that.
I went to a pharmacist I’ve known for many years. He reviewed my son’s medication list and said that two of his meds had a less-than one percent chance of causing him the problem. He also told me that with his primary diagnosis being anxiety disorder, he was only on a short-acting anxiety med. I was shocked. He spent over an hour with me discussing the best plan. He felt that we should go back to my son’s previous doctor no matter what it took.
That’s exactly what we did, and our insurance agreed. They approved a number of visits at in-network cost, but it took time. My son got very ill again. We took him to urgent care. The doctor did blood work and said he would call me at 1:30 the next day. I waited…and waited. By three o’clock, I called the office. Both him and his nurse had left at lunch-time for the day. Grrrr. (This was the second time he didn’t call as he said he would.)
My son ended up in the emergency room (ER) that night, needing IV fluids from severe dehydration. Like the PC doctor, the ER doctor didn’t know what was wrong. They both said they had never seen a rash like my son’s and to go to a dermatologist. After showing him the reports from the gastroenterologist, he came back six hours later and suggested we get a colonoscopy for my son. Hello? Been there, done that and told you already.
The only thing he prescribed was pain medication, and it was for a medication I had told them my son was allergic to. I repeated the names of the two medications my son is allergic to. The nurse replied, “Oh, there’s a lot of other things the doctor can prescribe.” He came back with a prescription for the other medication he was allergic to. I really had to hold my tongue at this point.
After that, my son ended up on home/hospital from school for a month. He had already stopped work. He didn’t get better. The dermatologist couldn’t identify the rash and did a biopsy that took two weeks to get the results.
One night, my son called me in the middle of the night. He was in his room in so much back pain he couldn’t yell or get out of bed. He was in tears and sobbing. I couldn’t understand a word he said. These periods of pain continued.
If you didn’t know, my son is autistic. He has difficulty expressing himself, doesn’t complain and has social phobia. Trying to get him to say what was wrong was like pulling teeth. Every doctor visit, I prompted him to express how he felt to the doctor and why. He’d walk in, close his eyes, and not say a word. He later told me his brain shuts down when he is experiencing anxiety. This worries me. What if I am not there to help him with situations like this?
Anyway, we finally got to see his previous PC doctor. He agreed with the pharmacist. We put him back on his full doses of autism and anxiety medications. The doctor said the diabetes program the other doctor had him doing was having no affect. It was like a dog chasing his tail, going nowhere. He changed things up and got him started on the right road. However, he didn’t have time to discuss the pain or the rash.
By the time we went to the dermatologist for the results of the rash, my son was in so much pain he couldn’t sit down. He looked at the lump on my son’s back and put him on four months of antibiotics. The results of the rash were inconclusive, and the doctor is still trying to figure it out.
My son ended up in the ER again with severe pain he said was in his back, stomach and head. It turned out he had a pilonidal cyst at the base of his spine that had abscessed. The ER doctor lanced, drained and packed it and put him on a five-day course of antibiotics. He said the other antibiotic was the wrong one.
These events took place over the last four months! No, I didn’t make a mistake. Four months! My son is slowing starting to improve. He is gradually coming off all the diabetes medications and pain medication. His PC doctor said it might take another twelve weeks for him to fully recover.
This has been a huge lesson about the incompetence of people in the medical field, how you have to fight for decent care, and also how serious anxiety disorders and other mental disabilities can affect your care. Not to be a downer, but unless huge things happen with the medical industry and unless more education and support are given to those with disabilities, this country is going to be in serious trouble. I fear for my children and their future. Actually, all of us.
Cindy A. Christiansen
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