The Mom Chronicles: Mystery Diagnosis

Meet the Berenger family – Greg, Susan and daughter Ashley.

When Greg & Susan had Ashley, she immediately started having health problems. After they took her home from the hospital, they would feed her a bottle and it just appeared as if she couldn’t breathe and drink her bottle at the same time. They brought her into the doctor and she was immediately hospitalized for severe apnea (stopped breathing) and reflux. She actually stopped breathing 60 times in 12 hours! Greg & Susan were so thankful that they got her in. The doctors acknowledged the severity of her apnea, but reassured us that this will be something she will outgrow. In the meantime, she had to be on an apnea monitor for her first year of life. Unfortunately, her apneic episodes and reflux impacted her growth and she had been diagnosed with failure to thrive. One doctor even told them that these babies “don’t typically survive.” They were amazed at the comment, but pressed forward diligently. The reflux and failure to thrive was somewhat relieved by switching to a formula that was easier on her tummy. She gained weight and we just figured we’d have a smaller child. Both the apnea and reflux were pretty much resolved and they went on with our lives.

Flash forward to toddlerhood and Ashley began having chronic respiratory infections. These were not just any typical respiratory infection – they would last 3 weeks long, require intense breathing treatments and they were, at times, back to back. Susan just remembers that time as “survival mode”. Both Greg & Steve suspected that something wasn’t right. But their pediatrician just kept sending them home with medications and assured them that this is also something she will outgrow. Susan recalls some of the things other people would say to her during this time like, “Why don’t you just let Ashley just wear out her illness instead of always putting her on that medication?” Or, “If you just put this “special salve” on her feet and then cover it with socks, she won’t get sick anymore.” Others obviously didn’t understand the severity of Ashley’s respiratory illness!

Finally, when Ashley was 4 years old, she was referred to an allergist where they started investigating. She started receiving allergy shots, but unfortunately, they were never able to get to the maintenance level before she would get sick again.

Diagnosis At Last
Susan was exhausted and ready to get some answers. Her local allergist in their small town ran more tests and a major diagnosis was discovered. Ashley had Common Variable Immune Deficiency, or CVID. CVID is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. The exact cause of the low levels of serum immunoglobulins is usually not known. As scary as the diagnosis was at first, at least they could look back and see a common theme and see the connection. Now, Ashley goes to Dr. Richard Wasserman in Dallas – even though the drive is several hours from their small Texas town – Susan believes he is one of the best pediatric immunologists in the area.

Last year, Dr. Wasserman ran some more tests because it appeared that her illnesses continued to get closer and closer together despite managing her asthma and allergies. The tests revealed that her immune system needed help so they began monthly gamma globulin infusions to provide Ashley’s body with the antibodies needed to fend off illness. Although she has been out over 29 days of school for her infusions, no major illnesses have occurred since starting this treatment.

Dietitian Assistance
Ashley was now 12 years old and was still having trouble with weight gain and very low energy. The Berenger’s were referred to a pediatric dietitian, although Susan was not sure what the dietitian could do more than what she had already been doing. To their surprise, targeted food therapy allowed her to double her calories! Some supplements are available for retail sale, but what Susan learned is that dietitians have access to many different types of caloric substances that the public does not and they know how to use them in targeted ways. Within a couple weeks of the high calorie prescription, Ashley was a different person. At her tennis lessons, she used to only have enough energy for half a lesson and she got so tired that Susan had to hold her racquet. One day not long after food therapy started, her tennis coach saw a different girl. She was running around the court – completed her lesson – and was even joking and carrying on with him! Ashley has been making excellent strides in both weight and height since seeing a dietitian.  The hope is that she can have significant catch-up growth as she continues on this food therapy.

Greg and Susan recommend the Immune Deficiency Foundation for reliable information on any suspected or diagnosed immune disorders (be careful to self-diagnose, always refer back to your physician or physician specialist). As for her, she does not prefer community forums because many times she would see horrible cases that made her worry more. She needed to stay positive for Ashley’s sake. What does help her is that she uses an 8 ½ x 11 planner and tracks Ashley’s trends – illnesses, food intake and even weather changes. This really helps her identify problems before they begin.

Susan learned 2 major lessons along the way. Listen to your gut instincts. She knew something was not right with her little girl and she wished she had demanded further investigations sooner (even though surprisingly, only about 20% patients are diagnosed before age 16). And she wished she had dietitian guidance sooner so Ashley could have grown more aggressively despite her illnesses. She wonders now how her lack of nutrition played a role in the frequency of her illnesses.

If you suspect that you or your child has an immune disorder, talk it over with your doctor, or even seek the advice of an immunologist for further testing.
To find a Registered Dietitian in your area that specializes in your or your family’s nutrition needs, go to the American Dietetic Association’s Find a Registered Dietitian link on the top right of the main page.

Names were altered for privacy.

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To all my families that graciously gave of their time to participate in The Mom Chronicles, thank you! We hope that by reading these posts that at least one family dealing with a chronic illness is helped and/or encouraged to demand good medical care, reach out for community support (reputable forums as listed, family/friends and/or faith-based organizations) and seek the guidance of a Registered Dietitian. If you are blessed to have children with good health, may these posts serve as a reminder of how fortunate you are. This post completes our series on The Mom Chronicles.

The Mom Chronicles: Type 1 Diabetes

Welcome to The Mom Chronicles!  This is a series of blog posts featuring families that have a child with at least one chronic medical condition helped by proper nutrition. As you read these touching stories, we are reminded that unlike societal influences, food is not just about weight control. It is a critical element to our lives that keeps us alive and functioning normally. I work with families everyday that have children dealing with health problems that require food therapy.  Here are just a selection of stories that I hope you forward to any family that may be helped. This blog is about helping families and it is my hope that we accomplish here by sharing stories of real families. This first post happens to be family friends of my family, but others may be some of my patients or others that I have been directed to for this blog series. 

Meet Joanne and Fred along with their children Elise, 3 and Mattias, almost 8 months. They are a typical family with a unique challenge. You see, Elise has Type 1 Diabetes. I recently interviewed Joanne, who is now a major networker and activist in the juvenile diabetes world. More on that after the interview.



Elise and Joanne
Check out Joanne's blog, Death of a Pancreas

Give us the background story of Elise’s diagnosis of Type 1 Diabetes.

Starting at about 6 months, Elise developed chronic UTIs. We think that may have been the culprit that caused her white blood cells to attack the insulin-producing cells in her pancreas. We had no idea that when we took her in for her 12-month well child visit that two days later we would be in the hospital with a diagnosis of type 1 diabetes. Because of Elise's UTIs, her pediatrician ordered a urine test to make sure there were no bacteria. To everyone's surprise, they found sugar. A repeat test was ordered plus a blood test called an A1C (which gives you your average blood sugar over the last three months). The A1C confirmed that Elise had diabetes, though she was in the very early stages of the disease. We were called with the news while we were in the middle of Elise's 1st birthday party, and had to shut everything down to take her to the hospital.

What were the challenges of following a constant carbohydrate prescription? How did you work through those challenges?


Elise with her baby brother, Mattias

Sometimes trying to get a baby to eat is more painful than pulling teeth! With the type of insulin Elise is on, she needs to eat the same amount of carbohydrates at pretty much the same time, every day. Thankfully, Elise has always been pretty good about eating what is put in front of her. I am not a fan of the “clean your plate” mentality, but with Elise it's a must. Since we give her insulin before her meals, she must finish everything that is put in front of her, or she could pass out or have a seizure from a low blood sugar.  One thing that really works well for Elise is to make sure she has a variety of foods on her plate at meal time. If we have pasta for dinner, we also add some fresh veggies and fruit, as well as a yogurt and a few graham crackers for dessert. She loves to eat a little bit of everything!

What do you think are the core components of living an optimal family life when one of your children is living with diabetes?

First and foremost, faith. There have been so many times I have been on my knees, crying out to God asking Him why this must be our life. And His answer always is, “I don't make mistakes”. And I believe that with all my heart. I am amazed to see how diabetes is shaping my daughter's life. She is so strong and wise; I believe she will do great things with her life, despite the hardships of her disease. I have also seen how I am ”fearfully and wonderfully made” for caring for a child with diabetes.

Joanne, Elise and Fred in 2008 on World Diabetes Day

Having a strong marriage and a partner that is as fully involved as you is also key. I would not be as healthy mentally without my amazing husband, Fred. He is there to pick me up when I’m down, take charge when I feel overwhelmed, and give me a break when I need it. He knows just as much about Elise’s care as I do, so I never feel like I am the only one who can care for her.  

And having a support system of people who “get it” is also so important. For me, that’s the Diabetes On-line Community (DOC). They cheer me on when things are good, and are there to listen when I just can’t take it anymore.

Give us a brief rundown on things to say/not say to a parent that has a diabetic child, or any chronic medical condition for that matter.

Stay away from the stereotypes you’ve heard about the disease. Stick to general questions; like, “what causes type 1 diabetes?” instead of, “did she get that from eating too much candy?”  Don’t try to give advice unless you really know what you’re talking about. And no, seeing something on Oprah, doesn’t qualify. People just need to think before they speak, and ask themselves, “is what I’m saying really helpful, or am I just talking to hear the sound of my own voice?”  I find it encouraging when people ask questions to actually learn more about diabetes. If you’re unsure, just ask! I love to educate people on type 1 diabetes because there is so much misinformation out there.

Please provide some of your favorite Internet resources for parents trying to properly manage their child’s diabetes.

All my sweet D-Moms, D-Dads, and PWD (People With Diabetes) of the DOC- Diabetes Online Community! I love to read their blogs and learn what works and doesn't work for them. I have picked up some of the best tips from other parents who are in the trenches dealing with this disease every day.  I also like Calorie King for looking up carb counts. Their food search database is awesome!

Anything else you would like to share?

That type 1 diabetes affects every facet of our lives. Everything we do, we have to give consideration to Elise's diabetes. It doesn't stop us from living our lives, but it certainly affects it. So many mistakenly think that diabetes is, “just give her a shot and don't let her eat sugar”. Besides the fact that she CAN have sugar, it is so much more than that. Diabetes is so frustrating in that you can do everything “right”, and it can still go so horribly wrong. I've often said it's like trying to play a game, and the rules keep changing on you.   But as overwhelming as this disease is, we are determined to not let it steal our joy. And our prayer is that Elise will grow up and live a wonderfully joyful life, in spite of the hardships that diabetes can bring.

Check out Joanne’s blog entitled Death of a Pancreas. Join Joanne and Fred as they continue to raise money for juvenile diabetes research. They have already raised over $30,000 with their annual Team Elise JDRF Walk for a Cure. I was very honored to be on that team this past year and we had a great time. Fred, who is from Portugal, has another team over in his home country doing the walk as well. It was very inspiring. Be sure check out The American Diabetes Association (for reliable information) and Children With Diabetes (for community support).  Alway cross check any advice given on non-professional forums for the utmost safety of your child.  To find a Registered Dietitian that specializes in juvenile diabetes, go to the American Dietetic Asscociation's RD Finder.