GI Update

We saw the GI last week for Bugs 6 month follow-up. I explained that while she has been doing well with the reflux, that she was still having these episodes of severe stomach pain that even additional reflux meds don't touch. I reminded them that our food allergy tests were negative (for the things they tested for) and that I still thought there was something else going on but I didn't know what. Well, the next thing I know they are asking about things like noise sensitivity, headaches, and other migraine related questions. I kind of chuckled, and told them that I had it on my list to talk about the new pedi in two weeks about some headaches and spots she sees.

Well, as it turns out they think she is having abdominal migraines. I had never heard of them! The symptoms fit Bug to a "t" - but I was still hesitant to jump on board. We've had so many "this could be it" diagnosis's with her stomach that I just hate to buy right in. But, again, the symptoms fit so perfectly - it was hard not to get excited. Also, kids who get stomach migraines also tend to get regular migraines as they get older - and Bug's head problems have just really started during this past year. The severe stomach pains started as young as 5, and looking back at my notes I can even see the same pattern then as we have now. That pattern is everything is fine, then she gets a sudden stomach ache that keeps her from doing anything. They last 1-4 days. Just the same as abdominal migraines.

So - the GI told us to give Bug ibuprofen the next time she has a stomach ache. I looked at her like she was crazy, but she told me that was the way to treat it. She gave me a script for a different med if that doesn't work, and talked to me about a daily med as a last resort. I left the appointment feeling a cross between hopeful and totally shocked that this existed, and elated that we might have an answer.

A few days later Bug got a horrible stomach ache. We gave her ibuprofen, and within 15 minutes she was a different kid. She was singing, twirling, happy as a clam. Prior to that she was barely lifting her feet to walk, or hardly speaking. I was excited that the ibuprofen had worked, but still not convinced that was the solution. A result has to be repeatable to be sure that's what did the trick.

Less than a week went by and another stomach ache came full force. Bug said she had a headache too this time, and I gave her ibuprofen. Within 15 minutes the headache was gone, and between 20-25 the stomach ache was gone too. I was in shock.

So - while I do not want her to have another stomach ache, part of me is waiting for one, because if the ibuprofen works again I'll know we have our answer. An answer we've looked for for three years. Yes, she has GERD, there is no denying that, but I have always felt there was something more to it. I just never knew or would have thought it was actually related to a migraine!!!

The other news is we dropped her generic Prilosec in half. If this abdominal migraine stuff continues to solve her problems we might be able to wean her down even more. That was music to my ears!!!


BubbleGirl said...

It's good to hear you're getting answers, and that something is helping Bug's tummy!

Jaz said...

I was doing some research on the internet about an immovable shoulder, and stumbled across Girl, Dislocated's blog. From there I stumbled here. I, previously, had no idea what EDS was, and was kinda shocked to hear that there was a genetic disease out there that could do that.
After reading all of both your blogs, I am well-imformed and ready to not dial 911 when someone is screaming at me to - um - not dial 911.
On the serious side, I am, in my own weird little way, proud of how both you and Bug have progressed. From tummy problems to ring splints to tummy problems to ankle problems to tummy problems - you get the gist ;)
I just want to say - there is one more person out there who is aware of EDS - thanks to you and Girl, Dislocated. I hope that Bug's problems become non-existant in the near future - or something like that.
Good luck, and good job on being an awesome mother!

elise said...

Hi lovely,
I've read somewhere that EDS kids are susceptible to stomach migraines. Migraines in kids in general tend to manifest in the stomach as well.
Three times is good for most scientific tests so I hope the results are positive and one more issue can be knocked off the list of I-don't-knows. I get migraines, they suck, and I've learned to deal with them. Catching them early on is the best for treatment - once enough time passes and the headache gets bad enough, the simplest remedies won't work.
Good doctor!

Hua said...


I have been reading up on some of your post and it has made me become more familiar with this condition. I actually have a friend who has Ehlors-Danlos and never quite understood the pain it can cause on joints and muscles. I feel that this information would impact many parents who have children with this condition. I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to the Network and be very informative for others, and I'd like to invite you to learn more about it and apply to join at Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page ( provides details about participation, but if you have any questions please feel free to email me at