Navigate what the medical professionals are really saying

This blog is about the frustration I had at an emergency room with my youngest sitting there for over 8 hours and being mostly ignored by the staff.

Our youngest son had febrile seizures in the past. Febrile seizures are a seizure caused by a fever.  His first one was two months after we brought him home from his home country.  He was 2 and 1/2 years old.  We called 911 and were taken to the emergency room.  Since his home country does not give any children in orphanages immunizations or vaccines the medical professionals were ruling things out and not really assess what caused the seisure.  I kept saying that he was checked out by a pediatrician in his home country and also his own here in our community.  They still ignored me and I was so nervous about my child that I allowed them to do a spinal tap only because he did not have any vaccines. After, the resident did a spinal tap she told me that she never did one before.  I was clearly upset about that situation by using my son as a guinea pig. We were also admitted to the hospital because they were not sure what it could be and continued to not listen to what I was saying.

Further background on our son.  He had multiple operations in his home country because he had a very common hole in his heart and anal atresia which were fixed before coming home.  We were in the hospital for about four or five days and had many tests completed on him.  The results showed not issues. When in the hospital I stopped a professional from taking more blood because they would have to poke my kid again and I knew it was too much.  The professional was so mad at me and said that I would have to talk to the head pediatrician and I said please bring her here to talk with me.  When I explained the situation that my child has been poked enough and all your tests have not shown any major issues I think another test that is similar to the others are not going to show anything.     She agreed with me.  After that, we were sent home.

Our son did have two more in the following years but did not have another febrile seizure for about three  years.  However, he had another one when he was 6 and 1/2.  We called 911 and were taken to the emergency room but this time it was different.  The professionals were not super concerned.  We were mostly ignored.  We were brought to the room about 3:30 am and they did took blood and he had a sonogram.  They did not bring any food  or drink to him which we were in the hospital over 8 hours. I had to go and get him something to drink and eat.    My son also felt that because when I took him to the bathroom he ran up to the staff and said I am hungry can I please have some food.

To further my annoyance, the resident doctor came to me and said that neurologist wanted to admit him because he is too old to have a febrile seizure.  I said our pediatrician stated that a child can have one up until 6 or 7.  But they did not want to hear that.  I know something about seizures with my background in special education.  I knew that with reoccurring seizures his blood levels would show a problem.  I said I would like to talk to the neurologist because I had some questions for him.  The resident said the neurologist does not want to speak with me.   I again said I have questions for the doctor.  The resident did not answer me.  I restated the only reason that doctor wants to keep him was that he was 6.  The resident said they want to do a brain EEG for 24 hours.  I said none of the blood tests showed any concerns.  They said the only true test would be for my son to go through brain EEG.  But I challenged what they wanted me to do and they did not like it.  In the end, I signed him out of the hospital.

The next day we took him to our pediatrician and he said I was right to take him out of the hospital.    Our doctor agreed that our son had a febrile seizure and I showed our doctor all of the results of the tests. Our pediatrian said our son did not have any other issues and if we notice that he is  staring off into space or has another seizure we will need to do the brain EEG. But he has not had any other issues.

I have to admit that I was nervous standing up to anyone in the medical field. I felt that I was dismissed because I was not a medical doctor.  I explained that I have doctorate in education and have experience working with special needs children.  The medical community really did not want to hear what I had to say because I felt that they thought they knew more than a nervous mother for her child.  Navigating the system is really understanding your child and not feeling that you are wrong. If you feel your child is not getting the right care stop and do what is right for him/her even if medical community is telling you something different.  Be an advocate for your child since you know him/her better than any other person.