Roll with it

This year has been a big one as my little guy started kindergarten and I went back to work outside the home.  It has been a big adjustment for us all!  We’ve had some hurdles here and there but we found our rhythm and everything has gone better than I expected.

It’s been almost a year since my last post so let’s see……

Colin update:  He has done SO well at school.  He has an amazing teacher who has helped us with the big transition to kindergarten! We still don’t have definitive answer for why Colin struggles with food and pain so much.  His ultrasound series and barium swallow came up with nothing.   Doctors keep coming back to eosinophilic esophagitis.  Although his first scope didn’t find evidence of eosinophils, two doctors have now said they think that a future scope will find it.  The other theory is that he is experiencing functional digestive pain along with whatever they’ve yet to diagnose or due to his history of having so many food issues.  We don’t have any new meds or leads for now.  We actually did some therapy to help with pain management techniques.  It does help him a lot, especially at night when his pain is the worst.  We are trying to decide if we should agree to another scope.   Part of that answer may depend on his sister….

Yes, our older one has started showing signs of swallowing issues and digestive pain.  Although its been creeping up slowly over the last few years, it’s really been rearing its head the last 6-8 months.  What we originally thought was just classic acid reflux, hasn’t responded to several different medications and so she’s headed off to her first scope soon.   I’ve had a few moments of “Oh no!  Not you too!” but for the most part we are just taking it in stride.  We’ve been down this road.  My daily prayer is that they will FIND AN ANSWER because not knowing is truly the hardest part.

So on to more fun things…. like Cooking!

We had our kitchen redone!!  This was a plan 12 years in the making and we couldn’t be happier.  No more purple countertops or broken cabinets!  I have a wonderful island that makes working in our kitchen so much easier.  During the renovation I cooked most of our meals in an electric skillet on top of our dryer in the basement.   It was hilarious, sometimes ridiculous and often not what I’d call delicious, but it was worth it!

Safe Foods Update:   Although we don’t strictly avoid soy anymore, we stay away from soy flour.  We also avoid oats, chocolate and dairy.  I’ve had a few new dairy free finds that I’ve really loved and will be sharing them with you this week.  We are on spring break so I’ve been trying out some new recipes and having adventures with my two little goofballs!

If you have any spring foods you are loving, feel free to share below!




And we’re back to dairy free

So maybe I jinxed myself by saying that my son had graduated from MSPI.  Maybe we’re just moving onto the next phase of his body saying “Food and I are not friends.”   Whatever the reason, we are back to dairy free in our house.

We had another major downturn in Colin’s ability to eat over the winter. (I actually wrote a long post when I felt really defeated but didn’t publish it.)   Whereas last year Colin had severe esophageal spasms, this time it was mostly chronic, often debilitating nausea.  Colin lost interest in food, woke up in pain every night, became more upset about leaving the house and lost weight.  It was rough.

Five months, several doctors and a variety of hospital tests later, we still don’t have a clear diagnosis.  The most popular theory is that he has Eosinophilic Esophagitis.  It is basically allergy cells in the throat that shouldn’t be there.  There is no cure but there are some medication options to help manage it.    Two doctors said they’d bet this is what Colin has, but they think it won’t be caught/diagnosed until it does more damage to Colin’s throat.   The days he is in pain I get really mad that they can’t figure this out.  Thankfully he has good days and he is one tough kid.

Taking dairy back out of his diet has been helping somewhat with his esophageal pain and his nausea.   I’m glad I have the resources and experience under my belt to get back to living dairy free.   It has been a bit harder though, since Colin’s had a taste of the good stuff and isn’t super happy about removing things like his favorite waffles.   He’s figured out that staying off dairy helps him feel better so that’s more than half the battle.

So I’ll be posting more here as I’m back to reading every label and finding new recipes.

As always, feel free to share any dairy free or MSPI friendly food finds you love and keep fighting the good fight!








The Unexpected Speedbump

In the past few months, although my presence here has been quiet on my blog, our lives have been anything but.  I realized I had over scheduled myself/ over volunteered this year and became overwhelmed.  In the midst of my craziness though, Colin had a medical development that totally caught us off guard.

Day to day with Colin had been fine for so long that we took it for granted.  We’ve been eating/cooking/Living with MSPI for so long that we don’t notice it that much.  It is just another part of our lives we roll with.   And as we became comfortable with all of his sensitivities and found a diet that worked, we assumed that the toughest days were behind us and Colin would probably grow out of this. Or if not, we were ok with it since he and the rest of our family knows to plan and accommodate for what he needs.

At the end of this winter however, food again became the focus of every day. We had noticed Colin had some troubles with food, specifically chewing and swallowing.   Eating had never been easy due to his open bite so we didn’t think too much about it.  He seemed to be spitting out more food though over the last 6 months to the point where I wondered if it was time to get an outside opinion.  We talked with our pediatrician and then we made an appointment with an occupational therapist in our school district for 2 months out. While waiting for this appointment to come, one weekend suddenly Colin stopped swallowing any food. He would move food to the back of his mouth like initiating a swallow, but it would go no further.  Water, smoothies and oatmeal thinned to a liquid would go down but that was it.  I figured it was a sore throat or a tonsil issue, but he wasn’t sick and the pediatrician was very concerned.  The pediatrician couldn’t see any physical problems and got Colin to see a GI two days later.

In the meantime I was buying baby food, pureeing food and making smoothies for every meal, wondering if we were headed back to our Neocate days.   I was really wishing I hadn’t given away my baby food mill.   Colin was so desperate for food that wasn’t a smoothie that he suggested I put his sandwich through the potato ricer. So I did. Cue lots of laughing, mess and the conclusion that turkey sandwiches aren’t meant to go in a potato ricer. (He and I still giggle about this cooking experiment.) We got into a great GI who heard his history and said it was either Eosinophilic Esophagitis (EOE) or reflux (GERd) and that we should start Prevacid.  So we gave him prevacid capsules (opened and mixed into yogurt) but there was very little improvement over the next 5 weeks.   Colin could eat some very soft solids like cream of wheat but he would constantly clear his throat and then sometimes he would start to panic when his throat felt clogged.   He would cry and beg to go to the hospital. He was moving air and not choking, but these were scary moments for all of us while we waited for the painful feeling to pass.

During meal times I stayed with him while he ate to make sure he was okay. Meals took 45 minutes or more and he would eat tiny tiny pieces, spit out half of it but still have problems. Sometimes liquids would come back out. I thought that it was like having a baby again. My days were making soft food, feeding time, clean up a huge mess (from all the pieces and things spit out) and then repeat.   Since Prevacid didn’t help Colin, the GI requested an endoscopy with biopsies to check his throat, stomach and the beginning of his small intestines.  The doctor expected to find EOE cells based on Colin’s food history.

The scope went way easier than I expected. I had made a book of his sister’s trip to the hospital from a year before and we read it to Colin several times so that the places and procedures at the hospital were familiar to him when we were there. It also helped that Colin actually wanted to go because he was distressed about his food situation. Lastly, the hospital was awesome.  It had a children’s wing so everything is kid friendly. The nurse gave him Versed before the IV and anesthesia, so he was feeling relaxed and sleepy before it began.  He doesn’t remember much of it. After the procedure he had no pain or issues other than working the Versed out of his system.  He was like a drunk kid, wanting to run around and race cars but if I let go of him, he’d run into a wall.  I couldn’t leave him alone for a second and I hadn’t anticipated this part. It was kind of funny but I was glad my husband was home since I couldn’t even leave Colin for a second to use the bathroom myself. The immediate results of the endoscopy was everything looked ok but there were white plaques at the top of the esophagus. The doctor said it looked like EOE but usually you see them at the bottom of the esophagus as well. So we had to wait for the biopsy results for a conclusive diagnosis.

Ten days later the biopsy came back negative for EOE cells. A huge part of me was relieved, since EOE is not a diagnosis that has easy answers. But we were disappointed in that we were nowhere closer to figuring out what was wrong with Colin. By this time he was looking so skinny from his limited diet.

The doctor started Colin on Levsin (hyoscyamine sulfate tablets) to calm his throat at mealtimes. Her theory was that it was an esophageal spasm.   So we gave the tablets a try. They were tasteless and dissolved easily and quickly under his tongue.   Within a week we saw major improvement. He could eat a larger variety of textures and we had no more clogged throat-panic episodes.

So here we are today, about 3 months from when this started (It feels so much longer).   Colin is still eating a limited diet of soft foods. He loves hardboiled egg whites, raisin toast with lots of his butter so it is soft, bananas, a few types of cereal and some crackers. He can eat a jelly sandwich now but his favorite food, peanut butter, is too hard to swallow. He has been eating often and has put weight back on.

The GI said 50% of the time these spasms are caused by a virus that irritates the nerve endings in the throat. The Levsin helps calm it and eating is the way to retrain the throat to handle food. So we’ve got to keep eating and trying new textures. (Easier said than done with a stubborn and 4 year old.)   Over the next 2 months we are supposed to taper down the doses of Levsin and hopefully it will be something he just takes as needed in the future.

Thankfully making Colin his own meals and packing food for him when we leave the house is not new to me but it makes my heart heavy that he has more food challenges.   Hopefully this one will be a speedbump, not a mountain, and resolve itself soon.