Dealing with Doctors can be Annoying

It has been hard to be online with all the stuff going on as I try to figure out how to help my youngest feel better.  I’ll be honest.  Sometimes I’m getting on Facebook just to vent in a group with other moms and dads who get the struggle.  I decided I needed to put the recent frustration out here as well because I figure I can’t be the first that finds dealing with doctors can be annoying sometimes.

I’ve dealt with doctors not listening before.  It isn’t something new sadly.

Our First

We started back with our first – Miss Angela, born with Holoprosencephaly and Hydrocephalus, who they thought would never make it but did 37 months longer than they thought she was capable of.  I’m working on adding her story to the blog bit by bit as I’m able.  But to suffice it to say, we refused to believe she wasn’t capable especially when she repeatedly proved them wrong.

Then we have my hernias…

The Hernias

The first one was after Miss Angela’s birth (2002) and I was told that I should just have it fixed during my next c-section.  That belief by the local doctors was that A) we would have another child, B) that said child’s birth would need a c-section, and C) that I would be comfortable enough to have an entire pregnancy with a hernia.  My pain increased, we finally got it fixed when she was 1 1/2 years old and it was between the size of a pomelo fruit and grapefruit.  I had a whole new found respect in that doctor’s eyes.

The next was likely there from sometime after the birth of child number four (in 2010 an emergency c-section due to a chord prolapse), and through the birth of child number five (2014).  But it was not diagnosed until an emergency room visit in July of 2015.  Sadly by that time there were multiple hernia’s involved as my stomach muscles and fascia had thinned dangerously.  That repair didn’t stick, leading to another repair in January 2016.  This one also didn’t hold and the doctor did not believe me, until I was seen in April 2017 leaving me in pain for over a year to my latest repair in August 2017.

During that process the doctors didn’t always listen when I didn’t feel well or I hurt.

So I shouldn’t be surprised I have to keep fighting for doctor’s to listen.  But alas this last month as found me feeling that way all over again.

The Youngest

Our youngest has suffered from what we thought was MSPI (milk soy protein intolerance) since she was a baby.  We were told repeatedly she would get better and we could introduce those foods back into our lives.  She just turned four and we still are dairy free and soy free.  But we have an added complication of believing she also has an issue with wheat.

We have for a year been trying to work with an Allergist and a Pediatric Gastroenterologist, specialists three hours travel from where we live.  There are still no answers.  There is a huge amount of frustration.   This last set of phone conversations is what is prompting this post.

Here are some examples of why I’m finding dealing with doctors can be annoying, all over again.

My recent post in an online allergy support group started this way…

“I wish doctors would make up their minds. It doesn’t work both ways! At least I don’t think both can be true at the same time.”

Her Tummy Hurts

My four year old tells me her tummy hurts and feels like big block of wood or bricks after eating wheat a few times in a day. So she goes in spurts (of days) eating my homemade bread to refusing the same bread.   I’m told by the doctor’s office:

• “She’s not old enough to reliably say how she feels” so they are not placing much concern with it.
• In the next breath:  “She’s too much in control of her food choices” and I should be able to “just make her eat what she needs to for the celiac test” and “She’s manipulating you through her eating choices to get a reaction out of you.”

I’m sorry didn’t you just say she isn’t old enough to tell me something doesn’t feel good yet she is old enough to consider what food she eats and the reaction (they – the doctor- suppose) I have???

Our Food Reality

Yes she gets to choose what she eats sometimes. But once she makes the choice that is what she has to eat. We do not exchange it. If she says she wants a PB&J she has to eat to the PB&J. If she wants to advocate for something beside the sandwich she has to eat bites of it to get the other food.

Honestly I’m a short order cook every week. My husband has worked and stayed away from home for half a week for 7 years. He does the cooking. We usually eat from leftovers for the time he is gone. Often there is not enough of everything for the four girls and I to have another full meal so I often piece meals together from the leftovers. Or two eat this leftover and another eats something else. So making her a sandwich because she requests it is not out of our norm here.

Let’s face it, even babies can cry saying something hurts and parents have to figure out where.  She is just getting old enough to express where it hurts and trying desperately to get me to understand. 🙁

It’s Not Celiac

“It is not celiac” I’m being told. “Maybe it is an intolerance or sensitivity” Or “She is just a picky eater”.

That is what they keep telling me when they push for us completing the gluten trial and getting the bloodwork.

… Hmmm… That is funny I thought that whether or not you had celiac had to be proved with that gold standard of a test called an endoscopy?

The fact is she has never completed enough of a trial of gluten for the celiac test.

The GI wants 12 weeks of 2 pieces of bread each day prior to a celiac blood test. We have been trying since October when we determined that the first blood test was invalid because she hadn’t been eating more than one piece of bread a week prior to the test.  He failed to mention that necessary point when giving us the blood work paperwork.  Despite going to the office because we were concerned she had reduced her foods to 5-8 foods total, that part was not mentioned before putting her through blood work.

Because she is also Dairy Free and Soy Free many automatic “kid foods” like macaroni and cheese, grilled cheese sandwiches, chicken nuggets, etc are all not available to us.  I have trouble finding bread at the store that is dairy and soy free I make my own.  We do as much as we can but despite that we are still limited in the options to give her.

The facts are we have gotten to about 4 days in a row with symptoms that increase as consumption increases. 🙁

Her Symptoms

Her symptoms which I have called down to discuss with them multiple times during the last 6 months are:

• congestion and runny nose.  So much so that she has to be held upright to sleep at times and sleeps on a wedge elevating her.  I’m told “perhaps it’s a cold”.  hmmm, a funny cold that goes away when she doesn’t eat the foods.  
• itchy bumps on her knees, outer legs, lower back, etc. – no response there from the GI (more in a minute on that)
• and diarrhea diapers up to 4+ in a day (well maybe a concern there by the Pediatrician) with a gritty sand like texture, depending upon how many days she has had wheat in a row and how much each day.

And then she will go days refusing anything that has wheat. And repeat. So how can they be confident it is not celiac if she hasn’t had the test???

Behavior

We are noticing increased behavioral issues (anger, just downright being mean) 1 1/2 to 2 hours after eating wheat.  I’m told by the doctors…

• “behavior is not a indicator of gluten exposure” and the “behavior is caused by the breastfeeding she is still doing.”

….ummmm she only nurses maybe twice a day. In sleep and first thing in the morning. She never gets to the “reward” of nursing after being mean. So how is this connected????

We also noticed this same behavior with dairy exposure but I know she has not been exposed lately, not even through breast milk.  Despite my desire to eat pizza with real cheese and Reeses peanut butter eggs (thanks Easter season).

The fact is there is more and more research proving that the body will treat wheat proteins and dairy proteins the same way .  I will find a link and place it here.  There is a lot when you google but I want to make sure I have a really good, proveable link, to place here.  It is especially harder as there is discussion vs the whey proteins and lactose and the connections to celiac.

They “Don’t Know” What She is Eating

I’m told by the doctor’s nurse … “we can’t know what she is eating”.
–ummm I track exactly what I eat and what she eats, her symptoms and diaper reactions. 

But they have never asked to see the information.

I use My Fitness Pal for my food log and a now defunct baby app to track hers.  I’m trying to figure out how to track us better and tried getting a bullet journal going on this and just yeah… digital is better.  If I get this system figured out trust me I will come back and post as this is a need in the community of parents dealing with this type of a mess with their kids.

Rash

I’m told by more than one doctor, “Her ‘rash’ appears to be Keratosis pilaris”

… hmmm that is funny because it is only there when she is exposed to dairy, soy or wheat. When she doesn’t eat them it goes away.

My last ditch effort this last week was with a dermatologist.  At least the dermatologist was willing to acknowledge my connection here but couldn’t say medically it is connected. She isn’t eating enough wheat to see Dermatitis Herpetiformis … yet. It was acknowledged that with continued exposure and if the rash increased it might appear more like it.  I had some pictures showing what her knees began to look like before she stopped eating wheat again.  Technology failed me and I couldn’t put them easily on the bigger screen on the iPad but they were at least willing to look at them.

Just this week she complained about the bumps itching and then hurting if she touched them to scratch them. sigh… 🙁

To complicate this our ten year old, Miss L, has also realized she gets a rash and itches when she has dairy.  Her reaction and the time it took for us to realize it (after she turned 10) has made her fair-skinned arms a little scarred from her itching.  She tried some caramel corn at Christmas and was itching in less than two hours.  🙁  The bumps hurt her enough she mentioned them as she was concerned of her younger sister hurting as much as she has.  :'(  Yes at that moment I felt like I had the biggest Mommy fail sign had been placed pointing down directly at me for the whole world to see.

Our Current Reality

Already our youngest doesn’t eat a lot.  Yes she is little and yes she is four.  She “might” not need that much.  But I know she doesn’t have a wide enough variety.  She is quick to associate foods that she doesn’t feel good after eating as being something “not good” even if that food is not the offending food (at least from my perspective).

She eats some rice based cereals, a few corn based cereals,  PB&J made currently with my homemade (wheat) bread, rice & butter (Earth Balance), coconut milk based creamies, chips, peanut butter off the spoon, and fruit snacks.  It is not enough.

We are considering Gluten Free with her … she is already Dairy Free and Soy Free … but are trying to find a bread (bought or recipe) that she will replace my homemade bread with.  In fact I just dropped $9 on xanthum gum to try a recipe tomorrow.

In requesting a new GI referral, sigh.  My pediatrician seems concerned we will have the same experience unless we can find someone who deals with gluten intolerance/sensitivity and doesn’t just look at her as just celiac/not celiac.  I’m also getting the feeling the current GI’s office seems to have convinced her it must not be celiac, even though that goes back to my above question.

Even though this is different than life was with Miss Angela, it is still trying -and- stressful -and- exhausting.

My whole day can get derailed when the doctor’s office calls.

It is hard to keep up with anything going on outside my little world of our house.  A house busy homeschooling the three older ones, keeping the kids alive, everyone fed and the house standing.  That is actually why I started this blog so long ago, the idea was to keep family in the loop with Miss Angela’s care.  It has evolved from that time some but the basic premise is still there.

Reality sucks sometimes more than others because dealing with doctors can be annoying.

So that is my massive update.  The kids have been quiet, time to go check on them.

Blessings,