The Lehman Family’s Story
What is wrong with our son?
We have 5 children, 3 boys & 2 girls. Our oldest son Joas, now 10 years old, was born a normal, healthy baby, or so we thought. His newborn screening was normal but during his first winter he was often sick. He suffered from a lot of ear infections, respiratory problems and had lots of doctor visits. We took him to many different chiropractors to try to get him some relief.
At 9 months, he would get on all fours, put his head down and rock back and forth in his crib anywhere from 45 minutes to an hour. I remember lying there in the dark wondering what is wrong with our son?
At 10 months old, Joas had his first grand mal seizure. We took him to the hospital where he was diagnosed with RSV. We tried to describe how he acted, but they couldn’t diagnose him with seizures because they didn’t see him while he was having one. They referred us to a lung specialist. Two months later Joas had another seizure. Karen went to the hospital with him in the ambulance. They sent us back home with no answers, some medications and another appointment with the lung specialist.
At 14 months Joas had his third seizure. We went to Lutheran Hospital in Fort Wayne. There he had two more seizures and was diagnosed with dehydration. In a small sense, we were relieved because now they could see how he acted. We were referred to two more specialists - a neurologist and an ear, nose, and throat specialist. They did an MRI and an EEG, but everything was clear. Joas was put on seizure medication. The dose was high enough that he was very dizzy and very moody. After 3 days in the hospital we were sent home, again with no answers and 8 different medications. Joas was NOT a happy boy.
There has to be a better way
One day when I came home from work Karen said, “There has to be a better way.” We then went to NNI and searched for answers naturally. Joas was put on a no-salt, no-sugar diet and we slowly weaned him off of the seizure medication. Joas still had a hard time falling asleep. He would lay on his back, clutch his blankie to his face, and shake his head back and forth until he would fall asleep. He never did have another seizure, but he often vomited and didn’t feel good. So we still saw chiropractors, searched for answers, and prayed. The next 8 years we watched his diet and sugar intake because he felt so much better with less sugar.
During his first 2 years in school Joas would wake up in the morning with a stomach ache and would sometimes throw up. Karen got frustrated because it seemed when we thought we had some answers Joas still did not feel good or would vomit. We tried a lot of different things with his diet.From 2011 to 2016 we added 2 daughters and 1 son to our family, who were all healthy with very few problems.
Baby Elijah
In 2018, we were blessed with another baby boy. We named him Elijah. He was born C-section.We didn’t know at the time, but his newborn screening had some abnormalities. The screen was repeated, and the results were normal. So they let it go.
At age 8 months Elijah had his first seizure, then another at 10 months. The difference with Elijah was he had fever and had been sick for a while when the seizures occurred. We didn’t take him to the hospital because we knew they wouldn’t do anything about it unless they saw him having a seizure. Two months later he had another seizure.
Then when Elijah was 13 months old we woke up at midnight with Elijah crying. Karen picked him up; he stopped crying, he went limp and his breathing was very shallow. He didn’trespond for one hour. He then fell asleep and slept the rest of the night. One month later he was sick again and had fever. He was sleeping in his crib at 7:30pm when I went to check on him. His breathing was very shallow and choppy, and he was not responding. We took him to the ER. His oxygen level was at 66%. They did a CAT scan, spinal tap and chest x-ray; during all that time Elijah still did not respond.
We were transferred to Fort Wayne by ambulance. Elijah started seizing when we got there. They put him on seizure medication and he finally started to respond. By that time it had been 5 hours since he last responded. Karen and I were exhausted. The next morning they did an MRI and an EEG. All the tests showed clear, except the EEG showed that the left side of his brain was slower than his right side, but still normal.
We went home on high doses of seizure medication. They diagnosed him with epilepsy but the doctor said he would probably grow out of it. We often checked on Elijah during the night, sometimes every hour. When he was sick, Karen slept on the recliner with him, so she could tell if Elijah was responding or not. One month later Elijah became unresponsive again. We took him to the ER with the ambulance. There he started to respond. They transferred us to Fort Wayne to monitor him; we were admitted for two days. Again Elijah had some testing done and again no answers. But this time our neurologist referred us to The Community Health Clinic in Topeka for genetic testing.
finally answers we were looking for
The first time we met with Dr. Z at the clinic, she thoroughly examined Elijah and collected saliva for genetic testing. Dr. Z explained how genes work and answered all our questions. Karen & I were both excited and felt we were in good hands. Dr. Z was different than any other doctor or specialist we had ever met. She was very observant; we felt she was not just a “book” doctor. She listened to our concerns and thoughts.
Six weeks later we got the saliva test results back. Elijah has a genetic disorder called Propionic Acidemiaor PA for short. This means he cannot break down certain amino acids in protein. It then builds up in his blood stream and turns into toxic matter. This toxic matter can cause seizures, strokes and heart problems. Elijah will have to be on a vegetarian diet and have his protein monitored for the rest of his life.
Then Dr. Z told us she thinks Joas may also have the disorder and she wants the whole family to be tested. The test results were that Karen & I are carriers, Joas is positive (affected), our two daughters are carriers and our other son, Noah, was negative. Now finally everything made senseas to why the boys had healthproblems and seizures.
We will have regular follow-up with Dr. Z and the heart specialist at The Community Health Clinic. Our experience at the Health Clinic has been a good experience. We always enjoy our visits. Everyone is so nice and helpful.
thank you to the chc
One snowy day in December several staff members came out to our house to examine Elijah because he was sick. We are so very thankful to have a doctor and nurses that care. They make it a pleasant experience to have children with a disorder. We want to thank God for his mercy and grace and thank Dr. Z and her staff for everything they do for our boys and us. We also want to thank the community that helps support the Health Clinic; without the community support, it would hardly be affordable to do what it takes for the health of our children.
Thanks & God Bless,
Joel & Karen Lehman