Update and Info on Mason

Where to even start. Mason’s allergies have been such a huge part of our lives… since the very day he was born. Mason came home from the hospital with eczema. Little did we know where that patch of itchy skin would lead us. Mason’s allergies continued to get worse. This week we had our usual every 6 month blood work follow up, only to have our hopes slashed and find out they were ALL significantly worse. Everything is worse. I came home completely unsatisfied from this visit. My mommy gut has always felt there was more to this. That it wasn’t just Atopy, which is what his allergist says. (That’s really just a strange word for a genetic predisposition to hypersensitivity, allergies – of all kinds- dermatitis, asthma, on and on…). Mason has most of the things on that list, but I just wasn’t convinced that that is all it was. His allergist even noted that they typically get better with age, not worse. And when they get worse, it’s commonly due to something else… but he wasn’t willing to test mason for that “something else”. He wanted to give him another year. I was not ok with that. If my child has an underlying problem, I want to know yesterday, not in another year. Why on earth would a doctor with a suspicion of some other condition tell us to wait a year. Well, this mommy wasn’t excited about that. The fact that he even had that suspicion and with my nagging mommy gut feeling, made me push for more to be done.

I happened to reconnect with an old friend who knew a little about this stuff. And upon talking about it, another friend happened to know someone who knew someone…see where this is going? In a matter of just 24 hours, I had information on diseases that fit Mason. Complex diseases with simple management- that would lessen his allergic reactions.

So I made some calls. I called our allergy nurse who told me to call one specialist whose nurse sent me somewhere else and somewhere else. I finally got to the GI department at Children’s and talked with the nurse practitioner. She immediately said his symptoms (awful skin that he scratches until he bleeds, asthma, chronic cough, food allergies, hypersensitive environmental allergies, etc) were not just a simple “Atopy”. The NP I spoke with thinks Mason may have a rather uncommon disease known as Eosinophilic Esophagitis. This would explain why Mason doesn’t eat much, if at all during the day and it would explain so much more…well, it would explain it all.

So she has us scheduled to see her in April. If it is indeed what she thinks (which can only be diagnosed through endoscopy) then she will get us a referral over to the Eosinophilic Doctor at Children’s. He only sees patients once they have been diagnosed through GI dept. While it is a GI disease, it’s also consists of blood issues and this doc would cover all the bases of this disease.

But, obviously we’re talking about a disease only based on symptoms and a phone conversation. It could very well be many other things. Since we’ve been through 3 allergists at Children’s, one immunologist, one pulmonary doc and 2 pediatricians- all of whom say it’s something, but they can’t figure out what- the GI NP I spoke to today gave me a referral to the very best pediatric allergist in the nation just to get the ball rolling in case the NP can’t find anything wrong when we meet her next month. I had read about this allergist, but didn’t know how in the world I would get to see her. She is at the Mayo Clinic in Minnesota. The NP said if he has a problem and all those docs at Children’s can’t figure it out, this woman could. So we have an appointment with her already. It is scheduled for June. Whether or not we go will all depend on the tests and appointments here next month.

I was reassured to day that I was not crazy for feeling this way about my child and wanting an answer. Everyone I talked to said it was better to test and know for sure that we didn’t miss anything than to live day in and day out wondering if we are missing something- and leaving it untreated. So I don’t know what to think. I’ve been inundated with information and possibilities.

Honestly, this will all put my mind at ease. If it is just plain ‘ol allergies, we’ll deal just like we have the last 4.5 years. But I NEED to know there is nothing else (or that there is something else!) and I finally have the support and information at hand. I look at this little boy every day and question if I’m doing all I can for him. And now I feel like I’ve reached a point that I am. After the next few months are done, I’ll have some form of an answer and I’ll be able to sleep at night knowing I’ve done my best to make sure he is ok.

Side note: I had food allergies as a child too, and now I have an auto-immune disease. There is a chance all of this is genetic, so we’ll be testing for some other stuff coming up soon- just to see if he’s heading for the same path I am and if we can do anything now to help him.

Deep Breath- here we go!