Monday, December 11, 2017

Months of tummy aches, tests, food restrictions and... progress!!!

We have been on the upset tummy roller coaster now for several months.  I keep sitting down to blog and then feel like I just have too much to say and don't know how to say it all so then I stop and say nothing.  I should have written a blog post in real time when we were discovering everything.  I will try to remember the key details for our own documentation and to possibly help someone else who has a child struggling or is struggling themselves.  Before I go further I want to share that some TMI stuff will be discussed in this post.  I also want to share that M is eight and tells EVERYONE about these things, so writing about this here is not awkward for him at all.

This is long... really, really long!  I am also telling about the events of the past and mixing in updates from real time.  I realize this might be confusing to read, but at this point I just want this post done so I can get back to photo blogging :)

Our son M had tummy aches all fall.  They happened almost daily and were always worse after meals.  We saw his MD twice in a month and a different MD at a walk-in once.  They have all talked with me about the depth of the constipation issues he has. When they touch his tummy then can feel the stool build up in his colon on both sides. Finally at the third visit, our MD finally gave me a referral to Children's GI department.  In this area, GI Dr's will not see children so you have to go to Children's.  The referral happened several weeks ago and we are not scheduled for an initial appointment until January.  I called recently and learned that we might not even have any tests run that day.  The Dr. might just do some intake and feel his tummy and have us come back again in another month.  He will have to miss school and the office is an hour away.  We knew that we could not wait until January to start getting the ball rolling.  M was sick every day and needed help right away.  The MD's only, literally ONLY tip was laxatives.  They didn't consider a root cause for all of this or try figure out what it was.  Laxatives will not cure anything.  We knew we needed to try something while we waited to get to the root cause.

While waiting for January we decided we had to do something.  We have dear friends who have had success with a holistic wellness approach.  We decided to investigate.  After I met with the Dr. He gave us orders for blood draws and also to collect some stool samples.

The blood sample was a breeze.  M sat perfectly still and was totally relaxed the whole time.  The poo samples were not painful, but so very very gross for the mommy!  I kept it together, but barely at times.  The samples have involved instructions and are not simply a collection.  I will leave it at that because otherwise it might even get TMI for me!

After we collected the samples we waited and M continued to have daily tummy whoas.  Many tears were shed and not just by him.  I hated to see him suffer so.  

Finally the date of the appointment came.  We got to meet to learn about what the tests showed. M has 19 (additional) foods that he is reacting to. We received his food test info before Halloween and had lots of questions about it.  We were confused because M's blood serum didn't react to milk, wheat, soy etc... things that we know are a problem for him.  Everything on the list was things he had eaten right before the test which had me confused too. I learned at the appointment that if the food is totally out of his system, the blood wouldn't react to it even if he would have a big reaction to it.  There was an odd item on the list that through off my data, Brewer's Yeast.  I didn't think M ever consumed that, but interestingly enough it goes by another name that is hidden in many things.  It is in his "cheese" and broth and might be in supplements.  Since meeting with the Dr. we have noticed that M reacts to more foods than the 19.  He didn't show a reaction to several nuts (because he hadn't eaten them) but after the test I tried using those instead of the ones he usually eats and he started to get the tummy aches again.

Here is the list of what M can't have:

Nut/Protein:
almond, cashew, peanut, EGG, soybean *we are quite sure that all nuts are off because I have introduced pecans and pistachios with reactions!

Fruit:
Grapefruit, lemon, lime, orange, tangerine

Veggies:
pea, sweet potato, yam, corn

Grain:
Rice, Wheat, Rye, Barley

Oil:
R. Seed/Canola, Safflower, Sunflower

Other:
Brewer's Yeast, Cane Sugar, Mustard, Dairy 

We are trying to focus on foods he can have and count our blessings that he can have GF Oats, Coconut, white potatoes, tomatoes, apples and raisins.  He can also have all meats which is a huge praise!  Because we can cook with oats and potatoes he doesn't really eat paleo, but we often pin paleo recipes.  I usually search for vegan baked goods because they avoid milk and eggs. Finding things he likes to eat has been hard... but I digress... back to the rest of the results.

The "poo tests" had interesting findings as well.  His stool has very very very low protein and quite low fats.  The Dr. asked if he is eating protein.  I told him that we eat so much more meat that most families and that I try to pack protein into snacks too. I think he was surprised when I told him how much protein he ate. He said this means he isn't properly digesting his proteins and good fats. 

He had two dangerous areas of inflammation that were detected in the samples. EPX was high which indicates he has parasites or food allergies.  According to the tests he has NO parasites!  (more on this later, don't worry) This points to the food issues on the test that wasn't testing for food issues. To clarify, the blood test looked at foods and the stool tests looked for parasites etc. 

His Fecal secretory was off the charts high.  He said this means he has leaky gut and also major immune system issues, like having chronic cold/cough.  I had chills at this point because M has colds/coughs ALL THE TIME!  He didn't know that, but the test showed it.  Love it when tests speak truth.  He continues to have lots of colds etc so hopefully eventually we will be seeing more health in this area. 

His good bacteria look great.  He took Plexus Pro Bio 5 and the Dr. was impressed with his levels because of it.  Sadly he can no longer take this probiotic because it contains rice which he can't have.  The Dr. sells a probiotic without rice which is expensive, but the only thing we can't find for cheaper anywhere else so I am willing to pay for it. 

He had two other strange things in the poo: alpha hemolytic Streptococcus (Strep A) and Saccharomyces cerevisiae which is... wait for it... Brewer's Yeast.  He will be taking goldenseal and wormwood to get these two under control.  This bacteria is really causing problems in his gut.  

While I was collecting samples (TMI WARNING) I noticed something very "worm like."  I think we got to the bottom of that as well, it is actually the intestinal lining (he called it something fancier, but I didn't write it down).  He showed me what it looks like and that is what I saw.  I am glad from the gross factor that it wasn't a worm,  but sad that things are rotting in my son's gut. 

M was at this meeting and was captivated by all of this and listened very well as the Dr. shared.  We asked how long he has to stay away from foods he loves/foods our family is used to eating and he asked M if he could make it until March.  He said that he can have cheat meals at Thanksgiving and Christmas and T's Birthday, but to overall stay on this diet until then. He actually barely cheated on Thanksgiving and ate just a bit of my Grandma's corn, and had a tummy ache later. He also ate a tiny part of a candy cane after the Christmas parade and then got the flu the next day so he probably has a bad association with that as well.

After meeting with the Dr. M had x-rays taken of his gut area. M did great for the x-ray.  His back was very out of alignment, but since it has been years since he was adjusted, that makes sense.  I was less concerned about the alignment and more concerned about digestion clues in the x-ray.  Sure enough, his whole gut was black.  The darkness in his gut was old stool.  I know this not just because he told me, but because seeing it on an x-ray is not new to me.  Back when M had an x-ray six years ago, Drs at Children's showed me the same thing!  I am frustrated that I didn't push for more testing then.  I can't undo the past, but have to be thankful we are checking things out now. Anyway, he was backed up and leaking poo... gross, and yet incredibly fascinating that this can be seen from an x-ray.  An ultrasound would be able to see more, but what we did see was pretty crazy.  We are hoping that the supplements M has been taking are starting to heal his gut and that when we do get the ultrasound at Children's it will show progress in this area. 

Moving forward, some families choose to meet frequently with the holistic Dr. in the months between tests.  Because I am comfortable cooking for him and managing his supplements we have decided to just manage on our own and then ask for another blood test in March. 

Interestingly, during the same week that we went to the holistic Dr, Brandon and M went to his Rx prescriber for his med check. He has this every three months.  She was very concerned about his gut health and talked a lot about how influential gut health is in mental health and physical health.  For example, the gut has twice as many anxiety receptors as the brain.  This makes sense when we think about how our tummy responds when we are nervous.  For a kid with a lot of anxiety like M, she was hopeful that dealing with his gut issues could help his mental health.  

As I reflect on our many years of riding the trauma roller coaster I think about all the different therapies we have tried.  Trying to focus on gut health is not something we have explored beyond probiotics. We learned a long time ago that there are no quick fixes, but we are hopeful that we have another option to try and that even if the mental health issues don't change, we can do something to help the gut stuff in the next year.

So... we have been on this diet now for over a month and M is feeling MUCH better!  He has complained so much less about tummy issues.  He is also doing a bit better with emotional stuff.  We are truly hopeful that a healthy gut will be a big piece of the healing puzzle!

While we have not "cheated" much with M's foods, we have accidentally given him things on his list. We have also learned that foods M can't have are hidden in everything.  Lemon and lime juice or rind are in many things!  The "alcohol" in vanilla is actually corn, oops.

We have spent A LOT of money on fancy flours that M can have and snacks that sound great but don't taste so good. This is a steep learning curve.  I am happy to say that I am finally beginning to feel comfortable about food stuff.  I am not losing as much sleep to food related thoughts. I am planning to attempt most of my usual Christmas Eve feast items and hope to make many of them that M will be able to enjoy.  A local store sells duck eggs so they will be a help in making the meatballs!  

Thank you all for your care and prayers.  We truly do pray that bringing healing to his gut will affect his emotional/behavioral issues in a very positive way.  There is always something hopeful and exciting about starting a new treatment option.   If you could join us in praying that M will be open to trying more foods and that his tastebuds will like some of them.  It is very exhausting for me to spend a lot of time on foods that are quickly rejected. I am not sure how many of you read this whole post, but if you did... I am impressed and say Thank you!  

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