A Parent’s Search for Help During a Nutritional Crisis

Many of us face daily challenges with our children. But we work to the best of our ability to manage them. We work to make sure our children’s days are meaningful and filled with love. We hug them, take them places, and feed them good food. Sometimes it all works well, and other times it doesn’t. We can be surprised by what works well and we are sometimes caught off guard by what doesn’t. This is especially true when we are in a groove, not thinking about eating challenges, and just moving along from day to day.

We interviewed Rosemary, a parent of an adult son with special health care needs and disabilities, who had just that experience.

Life was going good. Rosemary’s son, Will, was doing well and he was happy. They had wonderful caregivers for Will—and Rosemary and her husband Bill were enjoying life knowing that Will was well taken care of by their family’s personal network.

Then Rosemary began to notice that Will was losing weight and energy.

Someone else mentioned to her that Will did not seem to be himself. Rosemary tried to find out what was going. It was a scary and hard process, but Rosemary didn’t give up. She kept asking questions. She kept going to different doctors.

And then one day her friend gave her a suggestion, to see a nutritionist, that turned everything around. Will is doing great now. He is happy and energetic. But getting him well again was hard work. He now has a medical home that is working well for the family. Rosemary was also able to get more attendant hours from the CLASS waiver by describing how important Will’s nutrition is and how hard she has to work at keeping Will healthy.

Tell me a little bit about Will.

Will is 35. He is very charming. He gets it. He is nonverbal, and you might think he does not know what is going on, but he shows you all the time that he does.

He had a brain injury during birth so he has multiple disabilities. He has a seizure disorder, cerebral palsy, and intellectual disabilities. He walks but he falls really easily. He needs some help with every step of living. He has fine motor issues. He can do things halfway but he needs help.

He sells coffee once a week and he loves that. He enjoys interactions. He laughs a lot and has a great sense of humor. He is very social. He loves people and activities. He is just fun.

He is very able and interesting. But if you just met him, you might think he is pretty disabled.

What first made you concerned about Will’s physical health?

The symptoms were that he was clearly losing weight. His clothes were too big. He was boney looking. And his energy level started going down dramatically. But he was still eating very well.

The more weight he lost, the more his energy went down. Then we started weighing him, and it became obvious that we had a problem. And people started saying to me, “What’s going on with Will?” or, “Will just does not look good.”

What changed for Will?

A couple of years before this happened, he had a very bad seizure. Before the seizure, he was on 2 types of medications and had been doing well for about 10 years. Then he had the seizure. We don’t know what caused that one. It was devastating and took him months to get over that — to be able to walk well and things like that. So, we changed his medication and put him on a higher dose.

What steps did you take to find out why he was losing weight?

We started taking him to different doctors. We were told he was losing weight because of the medicine, but we did not want to lower the medicine because then he would have another seizure. The medication was the easy answer. The first doctor said it was the medication. The neurologist said the same thing. The gastroenterologist said the same thing. “It must just be the meds.” It didn’t add up to me because he still had a great appetite.

I would also ask people all the time, “Have you heard of anything like this? Do you have any ideas of what I should do?”

I was just poking in the dark. I reached out to a lot of different people. I wrote to a doctor I knew in another city. I was saying, “We have this problem and we don’t understand it. Nobody seems to know why. He is wasting away. Nobody can do anything about it.”  We felt that he was dying and that we were losing him. I was asking everyone I knew, “Does anyone have any ideas?”

My friend was the one who had an idea.

How did the connection to other parents help you?

It is so important. I can’t stress it enough. When Will was 2, his ECI provider told me that I needed to connect with this other parent. That was many years ago, and we are still good friends. We could laugh about the same things that other people would think are crazy. I just gained so much from sharing and crying together, and nobody judges you. It’s encouragement, support, and information.

Another mother said that I should take Will to a nutritionist. Her son did an internship with this nutritionist.  She told me that this nutritionist had worked with people who have epilepsy. So I knew she was familiar with working with people like Will.  I had not thought of a nutritionist because he was eating so well. But it was the answer for us, and I would not have gotten there without the advice and suggestion of another parent.

What was the solution for Will?

It turns out that Will was low on Vitamin D. Will had gotten blood work done recently. The neurologist even mentioned that he was low on Vitamin D. But, it did not click for me or for the doctor. It did click for the nutritionist. She said he is too low on Vitamin D, and Vitamin D affects the ability to absorb some nutrition.

I went back to the nutritionist every two weeks for a year or two. She saw Will once. She got a kick out of him. He was in a great mood and upbeat that day.

We started adding a little bit of Vitamin D at a time. We looked at all of his nutrition and added other things he needed, like a very high-fat diet. And we trained everyone in his life to feed him high-nutrition foods and to keep a log of everything he ate. The nutritionist would check the logs, and we would adjust as we needed.

There is not a lot of data to support anything I have to say, but I know this worked for Will.

We started to see a difference in Will within a month to six weeks. He started to gain weight. He started to have more energy.

How did you know to ask for a Medical Home?  How do you get enrolled in one? How was that experience?

I looked into the medical home around the same time I looked into the nutritionist. Like I said, I was just asking everyone and trying different things because nobody knew what was wrong with Will. I knew I needed to have someone pay more attention to Will and watch this with me every day and every week. I needed someone on my side. I thought Will was going to die.

Will is on Medicaid and Medicare. Medicare has a medical home model. It is mainly for elderly people. It is cost-effective to have someone who knows about the patient, calls the patient to see if they are taking the medication, and stays in touch with them.

Will is different because he is not elderly, but the doctor agreed to do it for me. We were lucky because the doctor Will was going to had the medical home model at the clinic.

I became best friends with the medical home nurse. I could call him and say, “The nutritionist wants or needs this,” and he would just get it done. He coordinated with the neurologist and anyone else I needed. He is very aware of the issues and my emotions about the issues.

What is different is that now I have the sense that I can call the nurse anytime. We can get things done quickly. It is another level of awareness and communication. The nurse suggests things that I haven’t thought of. He researches things for me, like where to get a wheel chair. He also calls to check on Will. I can call him and say, “I don’t know what to do about this,” and he gets back to me quickly.

If other parents know about it, they can ask their doctor to be their medical home.

What 3 things do you want other parents to know about your journey that may help them?

1. Pay attention to your kid and what other people say about your kid. It took me awhile to take it seriously. I was in denial.
2. Keep searching. I kept looking and looking and looking. Go with your gut reaction. It’s OK to say, “You are not giving me an answer that makes sense.” So you have to keep searching.
3. Be open minded and willing to try something (of course, within reason) that you might not have known of before. I don’t really believe in supplements but I was willing to try them, and they worked. Think outside the box.

How is Will doing now?

Overall, he is happy and energetic. He is a very good eater. He loves pasta, fruits, and vegetables. He eats it as finger food. He has a major activity every day. He has a therapeutic and/or social thing to do every day. He has a three-wheel bike that he loves. But some of the time, he is too tired and can’t complete his activities. It is very hard to know why this happens. But overall, his health is good, and his weight is holding steady at a reasonable level.