Monday, August 1, 2016

If You’ve Got Your Health…

My youngest son, Roo, was ill for nine months! At nineteen he has already learned that if you’ve got your health, you’ve got everything!

It started just after Halloween 2015. We thought Roo had the flu with diarrhea, nausea, and vomiting, but it kept coming and going. He would miss a few days of school and then go back. He got weaker, fatigued, foggy-headed and a mysterious rash appeared on his back. His doctor was no longer covered under our insurance so we sought out a new doctor. It took time to get him an appointment.

Roo finally saw a new primary care doctor in December. By then, he was very ill. He was throwing up blood and passing blood in his stool. The doctor said his blood work was all out of whack; his sodium level dangerously low, his glucose moderately high and other tests were abnormal. The doctor tried to say it was my son’s autism medications and wanted to take him off them. He wasn’t specialized in that field and it concerned me. Our insurance had referred us to him as the best doctor in-network for autism. In truth, he was a general practitioner. He stated that there is a shortage of autism doctors for people aged 19 and older.

Truthfully, this doctor wasn’t even competent enough to stabilize his sugar levels. We went back to our insurance company and waited for approval to see his previous doctor in-network. They approved it. This doctor did manage to get his sugar levels stable but had no idea what was wrong and had never seen a rash like his before. Neither had the multiple ER doctors we saw.

Roo was referred to a gastroenterologist and a dermatologist. He had a colonoscopy and an endoscopy. They found ulcers all through his throat but nothing in his stomach where most of his pain resided. The dermatologist biopsied the rash and said it looked like a contagious rash known as water warts, but we had to wait two weeks for the results.

Meanwhile, Roo continued to get worse. We had to keep taking him to the ER for IV fluids for dehydration. He ended up on release from school with a teacher who came to the house to keep his grades up. At one point, he was on four different medications for diabetes. The dermatologist could not determine what the rash was, even with the biopsy. It didn’t correlate with what his blood work told them. The rash continued to spread all over his body. I used Doterra oils to combat the rash, and it worked.

Month after month rolled by. Roo got sicker with severe stomach pain and a horrible, debilitating headache. He couldn’t think. He couldn’t walk. He ended up falling on the floor one day, and he couldn’t get up on his own. We took him back to the ER. The doctor found that he had a pilonidal cyst, so he lanced, drained, and packed it. Roo started to feel a little better.

It didn’t last long. Within a week, he was back feeling awful. One doctor after another prescribed antibiotics, more antibiotics and cocktails of antibiotics, all of which didn’t help. He got weaker and weaker. I begged doctors to test him for illnesses like Lyme’s disease, gallbladder disease, meningitis, appendicitis, but they refused. They didn’t know what was wrong, but they wouldn’t test for anything except the same standard CBC blood panel that didn’t lead them anywhere. His primary care doctor recommended surgery for the pilonidal cyst and narcolepsy medication to keep him moving. He was finished helping. Roo ended up bed-ridden, unable to stand light or sound.

After ten doctors, I finally got him into an internist that had come highly recommended for diagnosing illnesses. We had to wait six weeks to see her. On the first appointment, she said there was a medication that had helped a number of people with symptoms like his. The medication was Xifaxin. 

At some point through Halloween, he came in contact with the C-diff bacteria. It started his downhill spiral. As the doctor explained it, all of the antibiotics, combination of antibiotics, and, even the proton pump inhibitor prescribed for the ulcers in his throat, had caused “altered gut flora.” The Xifaxin is a counter medication, although labelled as an antibiotic. Within the first day of taking it, he felt 75% better. The doctor told us Roo might have to take it every time an antibiotic is prescribed for him for the rest of his life.

Unfortunately, Roo developed an infection at his incision site. He had to take more antibiotics. Then the site abscessed and required being cut open to heal from the inside out and more antibiotics prescribed. He got sick again and bed-ridden. He has had to take the Xifaxin again, and it is helping. This all happened over nine long grueling months.

I’m sharing this information to help you and everyone else know about this condition so you don’t have to go through what we did.

I’ve been studying about altered gut flora to see if there is any other treatment we can do. The site below states that the counter-medication gets less effective. There has been testing done on fecal transplants that sounds promising. However, the most recent doctor we saw says it is less effective than the article states.

I don't know what my son's future holds. The doctor states that probiotics are extremely important. However, he had been taking a quality probiotic throughout this whole ordeal. Maybe something more effective will be discovered in the future.  For now, we are thankful for the Xifaxin. It is expensive and not covered by our insurance.

The research I found states that a number of conditions might be affected or caused by altered gut flora, including anyone with an Autoimmune Disorder, C-diff, Rheumatoid Arthritis, Chronic Fatigue Syndrome, Autism, Candida, IBS Ulcerative Colitis, Crohn’s Disease, IBS, Constipation, Obesity, Parkinson’s Disease, Multiple Sclerosis, Anxiety and Depression. Here are a couple of links to get you started:

Wishing you all a healthy future.

Cindy A. Christiansen
Sweet Romance, Humor, Suspense...and Dogs!
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