Last week, I stumbled across an article that discussed abdominal migraines in children. As I read it, I had one of those aha moments where the light bulb went off over my head. I felt instantly smarter, yet stupid at the same time. You see, my child suffered from abdominal migraines for years and we had no idea. We thought she just had tummy issues. We were clueless but so were our doctors because no one ever mentioned it to us.
Rosie had a severe case of GERD as a baby. When I fed her, she looked like she was screaming because she had silent reflux and was in pain. Knowing something was wrong, I wound up doing a ton of research before I walked her into the doctor’s office at five weeks to tell them something was wrong. She was more than a colicky baby (which is common with kids with abdominal migraine)- she wasn’t eating well, sleeping and she wasn’t gaining any weight. Those symptoms continued for three years until we were able to find the right medications to help (oddly enough it was an ulcer medication that wound up helping her the most).
However, Rosie’s tummy issues went on for years. She’d often complain of stabbing pains in her stomach. She’d get carsick or airsick on every trip we took. She often had extreme nausea. Our pediatrician thought all the problems were caused by her GERD and kept adjusting her medications. Finally, he put her on a low dose of an anxiety medication, thinking that might help. It didn’t.
When Rosie was eleven, we decided it was time to have an EGD and get to the bottom of the tummy issues. She’d been so afraid of doctors and needles that we resisted the test before, but we weren’t really getting any answers to why her tummy hurt so often or why she was vomiting so frequently. The results were surprising. Her esophagus looked good and everything else appeared to be normal- she had no physical abnormalities in her digestive system, didn’t have celiac or cystic fibrosis. We were dumbfounded.
The next day, the Gastroenterologist told me that Rosie would be referred to the stomach pain clinic- the place that all kids with stomach pain go when they can’t figure out what’s wrong. I was shocked that the hospital would have such a thing. Were there that many kids that had stomach pain with no diagnosis? The answer oddly enough was yes.
For some reason, I was smart enough to press the doctor that day. There were times when Rosie’s stomach would hurt and then later she’d say her head hurt too. Could she have migraines? I asked him and then just happened to mention that my husband had them too. We were immediately referred to neurology. One MRI later, we had our answer- Rosie had migraines.
Eleven years. It took eleven years and numerous doctors to get a diagnosis. During that time, no one ever mentioned that it might be an abdominal migraine, yet, she had all the symptoms. It wasn’t until she started to miss a lot of school and her symptoms started to increase that we pushed our specialist for GI tests to try to get to the bottom of the issues. And, if I hadn’t badgered the doctor that day, we would have just gone to the stomach pain clinic and may not have made it to the neurologist at all.
We got lucky that I asked the question that day but I’m a fighter and a huge advocate for my child. Why am I writing about this? In the hopes that one day someone with a sick child will stumble across my post and have an aha moment so their kid can finally get a diagnosis.
Amber says
Poor Rosie! She’s had some major struggles it sounds like. So glad she has a great Mom and advocate!
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Barb Entleutner says
Hi,
My heart goes out to you and your daughter – and others suffering with this illness.
A friend just e-mailed your blog info to me. My daughter has cyclic vomiting syndrome (a form of abdominal migraine). I found this out about two years ago when she was hospitalized for dehydration (from vomiting). She had the same symptoms for years. Our doctor had no answers, no help. I explained in detail what would happen when she was sick; the Doctor said to bring her in when she had an episode. This was very difficult – as she could barely walk and was very weak. Also, this was the time when she had to go to the hospital. However, it was the staff at Children’s Mercy that gave the diagnosis of CVS, cyclical vomiting syndrome. Our doctor didn’t agree with that diagnosis – but he was wrong.
The Mayo Clinic has a very good article on Cyclic Vomiting Syndrome. Please check it out if you or someone in your family suffers from this illness.
Barb Entleutner
debcb says
Thank you so much for sharing this information. It’s so hard to get a diagnosis for many of these migraine-oriented disorders. Especially since many times doctors don’t listen. I’m glad you got a diagnosis. Did you know there’s an association for this? http://cvsaonline.org/
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gisele says
OMG I can’t believe I may have finally discovered what is wrong with me. I have episodes of getting really sick to my stomach and then going into a vomiting episode but because I have had hiatal hernia surgery, I cannot throw up. So I retch and retch until I have to go to the hospital and they shoot me all full of nausea meds and lorazapam until I pass out. All the tests have been done and all the doctors tell me is that it is in my head – well, perhaps they were right and it is abdominal migraine. I have suffered for years and have been really irritated that no one can tell me what is wrong. Thanks to all of you who write and explain what is going on. Visit with the gastro doctor tomorrow and will once again rule out everything else.
debcb says
I really hope you get answers! Let me know!
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