Dr Brooks initial visit

Last week I spent 20 minutes on the phone with Dr. Brooks discussing Megan and what I was hoping could be done for her.  This morning Will, Megan and I drove to Dallas for Megan's initial visit.

I spent the past 3-4 days preparing for the visit.  I edited Megan's overview document that I created for the sleep specialist last year. I included the information regarding what has been going on the past 3 weeks and updated what now know about her extreme salicylate sensitivity (had just gotten started on FG diet when I created the document).

I also created a document listing all of Megan's behaviors, medical stuff, our goals and questions.  The doctor used my document and walked through asking me about each medical concern, etc.  It was a very good interview - Will and I both felt like she was listening, paying attention and wanting to figure things out.

the last portion of the 1 hour session was spent with her conducting a very brief exam of Megan (heart, temperature, ears, abdomen and one of our concerns regarding a couple of bumps and a rash).

Our number one concern for Megan is her gut issues.  She asked me why we thought Megan had gut issues and I explained that she had always had digestive issues and discussed when things went off the rails regarding the sleeping issues.  During that discussion I gave a brief overview of the sleep disorder progression, including the fact that Megan pulled all of her hair out.  After I finished the overview she said "do you understand that the list of behaviors you are concerned about are all related to pain.  They are a response to being in pain".  We did know that, or pretty much knew that, especially about some of them.  Adults with Megan's sensitivity say that salicylates cause migraines and fibromyalgia symptoms.

What she said next hurts.  It it difficult to say it out loud or even to type.  Not that we didn't know this part, but she said that getting to the extent of pulling your hair out is bad, very, very bad.  It is not within the normal range of pain to get to that point.  And then she said she had only ever treated one other kid who had been in enough pain to pull their hair out.  Really, really hard to hear.

She sent us home with some samples of a digestive enzyme for us to start tonight.  We are starting with one capsule for Megan with her biggest meal of the day.  They told us to pour the contents of the capsule onto Megan's first bite of food for the meal, or put it in some juice.  I tried putting it in some water (Megan doesn't drink anything but water) but I couldn't get it to dissolve.  I then poured one onto her spoonful of oatmeal and it was so much that we had to knock some off.  They warned me not to try to stir it into food because it will immediately start breaking down the food but we didn't have a choice.  Megan did NOT like the power in her oatmeal so we had some issues getting her to take it and by the time Will went back to the oatmeal there was some serious liquid in it.  That stuff works fast. He fed her the liquid so we were able to get as much into her as possible.  We will have to figure out a better way to get this stuff into her.

Bedtime went much better tonight.  She was still crying but there wasn't extreme screaming forever.  Is it possible that what we were able to give her tonight is already making a difference????

The doctor wants to start Megan on a very high potency fish oil.  We used to give her one but had to stop because of the flavoring when we started FG.  The only issue is that the oil is lemon flavored.  Technically lemon is okay on stage 1 of FG but we know Megan can't always handle stage 1 items.  We will be getting a sample of the oil at our next visit on Thursday.  We will see how it goes, but hoping she doesn't have issues with it.

We will be getting Megan's treatment plan on Thursday.  It will include everything that the doctor thinks we should do for Megan now and down the road.  Will and I will discuss her recommendations and then choose what we will be starting with for Megan.  At that point appropriate tests will be ordered.  She had us go ahead and order a DNA test for Megan because it is something she wants done regardless and we order the kit, get the saliva sample and send it back in, so I took care of getting it ordered this afternoon.


NOTES: 1 capsule of Intolerance Complex with dinner; bedtime better, less screaming.