Exhausted & Searching For Answers For My Littlest Man

Bare with me as I get a little more personal with what’s been going on in my life the last few months.  Mason, now 19 months, has suffering from  ”Infant Reflux” since birth.  Actually, all four of my children had reflux and a sensitivity to milk.  Thankfully by the time they reached 10-12 months it disappeared.   Well all of them except Mason.  He has been on Prevacid since 1-2 mo old and currently still is.

The prevacid seems to help the reflux but he doesn’t seem to have complete relief.   He still has issues now.  He gags, seems to have trouble swallowing, and has thrown up/spit up food more often.   He doesn’t sleep well and is fussy.   Many say he just seems like something is bothering him.  It doesn’t help that he can quite yet talk about how he is feeling.  Yes, my 19 month old only says a few words.  The good news is he can comprehend and understand just about everything we say.

We went back to his GI in July to discuss his persistant reflux symptoms.  As I said before, the majority of infants outgrow reflux by the age of one.  Well we are way past that. He wanted a upper endoscopy with biopsies performed in August. Visually everything looked pretty good.  The doctor didn’t think the biopsies would show much.

The biopsies came back with inflammation, irritation, white bood cells, and rare eosinophil cells. Eosinophil ( EOS) cells are a type of white blood cell that  aren’t typically found it the esophagus.  They can be due to reflux or be due to whay is called eosinophilic esophagitis (EE).  It basically is inflammation of the esophagus due to these rare allergic cells.  It’s a newer diagnosis and research is still being done to figure ins and outs of the disease.  Mason numbers weren’t high enough to be diagnosed but its suspicious.

Mason was sent to an allergist to see if he was allergic to the top foods that could trigger this EE.  His skin prick tested for the top 12 allergy related foods, all were negative. Great right?!  Not exactly.  At this point I would rather have something to explain his symptoms.  With this diagnosis you’re just hoping to find something that is causing it.  Finding nothing doesn’t necessarily rule anything out.  CRAZY!!  We are left with a request to do a food log to see if we can notice anything specific food that might trigger symptoms.  The problem is EoE presents differently that a normal allergy. The normal rules for allergies don’t apply.  The reactions/symptoms can be delayed by hours or days.  How in the hell am I going to figure that one out???

I am so exhausted from 19 months of sleep deprivation and overwhelmed with it all.  It’s affecting the entire family and I am left with more unanswered questions.  I just want my little man to feel better.

I’m questioning whether the GI took enough biopsies in the first place.  On top of that there is conflicting information in the pathology report.

I actually spoke to our GI today and they want to automatically put him on a steroid that he will swallow twice a day.  This lovely steroid can cause  increased appetite/weight gain, irritability, and decreased immune system.  They say the side affects are 10% likely but I was told is more like 90%.  Lovely more crankiness and staying away from people who are sick.  That’s going to be easy!  UGH!  Regardless if it’s going to potentially give him significant relief I will do anything.

I saw our pediatrician today to address my concerns.  He is my saving grace.  I trust him and his judgement to the highest degree.  He is AMAZING!   He believes there is to much uncertainty.  Mason is in the grey area and we need to figure out what exactly is going on. Whether it’s reflux, EE, or something else we need to find answers.  Mason is only 19 months old and has been dealing with all this since birth.   Medications have helped but are not making him better.  Today is D Day.  We will find out if we will be taking a trip to the Children’s Hospital in Boston for a second opinion.  They are the best of the best and have more in depth knowledge and experience.

So that’s where I am at, what has been going on in our lives, and why I am not blogging as much as I would like.  All of my boys are feeling the stress of it all and need more of mommy.  Sometimes there’s just not enough of me to give.  I just have days when I’m struggling to stay sane.  I’m mad that I have never been able to 100% truly enjoy my children as infants, especially Mason.  I have days of complete and utter mental and physical exhaustion from all that’s been going on, including figuring out if I have lupus.

I am a positive person.  I have a good life, great husband, four beautiful boys, and a wonderful support system.  I am truly blessed.  I know it will all work out.  I realize other parents are dealing with circumstances far worse than mine.  I’m just in a funk and having a moment.