Originally posted August 2018
Today’s Wednesday story comes from a dear friend from the days of my first college experience at Snow College. What fun times we had! One particular adventure caught us trying to get to college in a blizzard. We couldn’t see a thing, and ended up stuck in a tiny town where Nicole remembered she had a distant relative. We looked up their number in a phone book at a pay phone-wow we’re old! Her relatives were the dearest grandparent couple you’d ever met! They pulled out sleeping bags for all of us roommates, and made us grilled cheese sandwiches. They treated all of us like family.
I wanted to share her experience with one of her children. I remember reading posts about all these crazy things her daughter went through. I hope that as you read this that you will be strengthened in your knowledge that as a parent, you are entitled to inspiration about what is best for your child. And also, that God is aware of what you are going through. And he will give you the strength you need to face any challenge.
“After a long difficult pregnancy my daughter finally was born May 13, 2013. She was a six pounds- six ounce 18 inch bundle of joy. We were so excited to have her here as part of our family. She was so loved by her older brothers and older sister. They were constantly fighting over who got to help Mom with the baby and mom had to be on her toes at all times as one of the siblings, especially her sister, would be a bit too helpful. There were times Mommy would be surprised to be brought a baby in which she thought was sound asleep in her crib. She was full of smiles and giggles and enjoyed the attention she got from everyone.
Her health was great until she was about 6 months old. We began seeing a difference in her sleeping habits where she began sleeping up to 21 hrs a day, and noticed she began to get quite colicky and had reflux. She also became disinterested in food and eating. And unfortunately became quite a different baby. Doctors began seeing her weight decline and not progress as she should. She began getting quite a few sinus infections and ear infections. We learned quickly after a few trips to the ER that she was allergic to antibiotics. And unfortunately had an episode where the ER docs got to see her turn into what looked like a sunburned baby from head to toe.
They had advised us to feed her more, add butter, oil and fats to her rice cereal. But it made things worse. During this time we lived in Fairbanks Alaska. The doctors suggested that we allow them to put in a feeding tube. I felt prompted that that was wrong, and that she needed something else. On two separate occasions they told us it was time for a feeding tube and again I said no. After the second time they put in her records “Mother declines medical treatment”.
Not long afterward my husband received word that he was going to be sent to Honduras for a six month rotation for the military. We felt I should move back to Utah to be with my parents and family while he was gone. This was also a way I was able to have support with my other 3 kids and be able to have specialists see her.
Just before moving to Utah she had turned one. Soon after getting settled at my parents house the baby got really sick. High fever and unable to keep anything down. We were able to get her to the Primary Children’s ER and they then referred her to be seen by GI and allergy. We soon found out that our precious baby had a major allergy to rice and milk. Here for months we had been making our baby sicker and sicker as we continued to feed her baby food rice cereal daily and upon the doctors advising us to feed her more and add fats to it.
We were devastated that we had made her suffer for so long. During this time the Doctors had her start some physical, occupational, and feeding therapy in which they too were using rice as a sensory therapy etc. This poor girl began having more and more problems and rashes now too. We quickly took rice away from her therapy and her diet.
With the testing that Primary Children did while we were in Utah we learned our baby girl not only had allergies but also had a mal-absorption and mitochondrial disorder; she doesn’t absorb Vitamin D or proteins. We found out that her body doesn’t react to viruses the same as normal cases either. For her it triggers a quicker more frightening response. On one occasion when, she was 17 months old, she went from the first signs of waking up with sniffles to having full-fledged pneumonia 24 hrs later. We learned to
be careful of her surroundings and lean toward the cautious side. Further testing later showed us that she has some other big allergies as well- Chromates and Cobalt. She can’t even take a multivitamin as it has these in it as part of the binding ingredient. These metals are in baby snaps and pant buttons, makeup, jewelry, paints, inks, clay, ceramics, craft supplies, school supplies and unfortunately, as we are currently learning, in Dental supplies and dental work. We are trying to find alternative treatments to both modern medicine and Dental work.
We are constantly learning from this girl. But even with these trials we would never change her for the world. She is priceless and a miracle. It is difficult to watch a child suffer or be in pain and you are unable to do anything to comfort or take the pain away.
We watched again as we learned modern medicine was doing more harm than good when our precious daughter, then four years old. She was suffering from yet another sinus and ear infection combo. The doctor prescribed another antibiotic with our caution and told us it was such a low chance of her reacting to it, and that using it was the better choice. After 3 days we soon knew it was a mistake and I immediately took her off the antibiotic. She began to have such horrible stomach pains and problems that after 5 weeks of suffering, lack of sleep, bloody and mucus laden stool, going through 54 diapers in a 24 hr period, seeing 2 ER Doctors, 1 Insta-Care Dr, and her Pediatricians office 2 times in one week with no help or relief, we finally got to see a GI Dr. who began treating her for C-diff before the tests even came back. Up to this point she had come back negative for C-diff on every visit, they tested her every time. We soon learned that her allergies to antibiotics had destroyed her colon and lining so much that she now had the worst case of C-diff damage the new doctor had seen in 18 yrs he’d been in practice.
After a few days of home treatment and ending up in the hospital for more stronger treatment we learned her allergies included the medications that treat C-diff as well. The illness peaked and she started vomiting as well as her diarrhea, and fearing dehydration she was admitted into hospital where she spent 10 days of treatment. While there she was placed in quarantine as C-diff is highly contagious, especially to the elderly. While there we learned of the C-diff medication allergy and found that, sadly, these were the only meds that she could use to get better.
To counter the effects she ended up having to take Benadryl 60 min before each dose 4 times a day. We continued this routine for 7 months until her colon and intestines healed from the damage the antibiotics had caused. To this day I keep pictures of the medication and a diaper to show doctors the results of taking that medicine that started that whole mess.
She is a miracle and is now eight years old. She has made up the time she lost those first 4 years, in the last 4 years, and become the spunky, loud, music and dance loving girl she is now. Unfortunately, she is now terrified of doctors and needles. Which, to say the least, makes life difficult for mom and dad especially when every 4 months her labs and blood tests are due.
We have to continually be aware of things in her environment, or what she touches or eats. No one knows how her body will react to any of it. On a positive note, we are pleased to have recently learned that there is testing she can take to tell us what is safe in the dental world to use on her. Sadly for her it was more needles and lab work, but hopefully with this testing we will soon know what can safely be used by the dentist for her cavities and dental/orthodontic treatment in the future. ~by Mommy on the Go”
I hope you enjoyed reading about Nicole’s experience. Watching your child go through a life-long illness like this is so hard. But with family, friends, and God, we are strengthened to bear all our challenges.