Category Archives: MSPI

More fun times for EJ

E is now just shy of 2 1/2 and things have changed a bit from last year.  We recently allowed him to eat too much soy, without realizing it.  When he gets bits of it in his diet over a period of time, then he doesn’t sleep.  We’ve known this from the beginning.  What’s new is that we have finally figured out the link.  Why do his food intolerances make him not sleep?  He doesn’t seem in a lot of pain.  Sometimes we can still hear him refluxing, we know that dairy and soy make that worse.  We always thought that the reflux made it hard for him to sleep.  But in the back of my mind, I knew there was something more.  He was too fidgety for it to be just that.  Almost hyperactive and on those nights, he adamantly will not sleep.  Hates laying down.  This lasts three hours or more, sometimes all night long.

On normal nights, though, he goes down perfectly.  Says his prayer, says, “goodnight, sweet dreams Mommy” and rolls onto his side and goes to sleep.

The link?  RLS.

I finally tried laying down with him during his most recent stint of not sleeping (it lasted about a week).  During that time, he wouldn’t stop moving around.  He finally fell asleep, and I could feel the bed shaking.  His legs were still moving, twitching, bouncing.  I couldn’t believe it.  I put my hands on them, and they still didn’t stop.  He stayed asleep though.

Every night when I put him down, I hold him and sing a song while pacing around.  It’s part of his routine, and it is the only thing that has ever worked for him.  Only this song and only a swinging motion.  Even while falling asleep or getting sleepy on me, he is kicking his legs.  I can’t remember when it started.  A long time ago.

When a child has food intolerances or allergies, their bodies don’t absorb nutrients efficiently.  Even when they eat well.  There is a very strong link between restless leg syndrome and nutrient deficiency.  I was shocked to find that out.  I don’t know why.

I know our food can have a tremendous impact on our health.  You eat to live, or you eat to die.

He is growing.  I think back two years ago, and I can’t believe we survived it.  It was awful.  Now, I believe he is catching up.  His height is closer to 50% than ever before.  He keeps getting taller, and his pants keep getting shorter, yet he’s so skinny they still fall off his hips.  I love that he is finally outgrowing clothes.  I thought he was going to be in 18-24 month clothes until he graduated high school.

Just kidding.  Mostly.

On top of the RLS stuff, a doctor thinks that E’s soy reactions sound more like allergies.  I don’t know about the dairy, it doesn’t seem to be worsening and I let him eat things with butter sometimes.  The soy is definitely getting worse.  He breaks out around his mouth now if he eats something with it, like eczema.  Bright red and irritated.  No hives though.  It only takes one consumption of it to mess up his sleep patterns.

He also still has the nastiest diapers ever.  I don’t know if he could fully potty train just because of that.

Prayers for this are always appreciated.  He is a healthy boy, and such a joy to us.  He is hilarious and loves to laugh.  It could be so much worse, it has been worse, and we can tackle these issues.

And you know what?  I’m still grateful.  I hate that he has gone through so much already in his life, but at the same time, his issues have had a huge impact on the health of all of us.  We have cut out all processed foods from our diets.  We don’t use refined sugar, only coconut sugar, raw honey, and grade B maple syrup.  We are in the process of cutting out wheat and many grains because of our gluten problems (it’s mostly me, but it affects us all).  We eat lots of good protein, veggies, good fats, and we are training our bodies to burn fat instead of carbs for energy.

It’s all because of E.

Then again, his problems probably come from the horrible food I was eating before he was born.  It’s a vicious cycle, but I’m glad to be awakened to it.

 

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Misconceptions

I am so sick of everyone, including seemingly every doctor ever, telling me that E will grow out of his MSPI.  And GERD.  The kid is almost a year and a half old.  At 3 months, when he was not growing and in and out of the hospital…getting a feeding tube, etc….it was all, “he’ll grow out of it by 4-6 months.  When his trunk gets stronger.”  At 4 months-“When he’s 6 months.  When he can sit up.”  At 6 months-“When he’s 8-9 months.  When he’s crawling and standing.  His body just needs to mature.”  At 9 months-“Should grow out of it by 12 months.”  At 12 months-“Anytime now.”  Sometimes I just want to fly off the handle.  There are A LOT of kids out there that don’t grow out of it.  That have food intolerances for years and years.  That have to take prevacid and other meds, and some even have feeding tubes for years because they can’t even handle eating.  How do our doctors not even get this?  Finally, recently, we went with a different GI doctor.  It has made a world of difference.  I have struggled with our pediatrician for a long time.  She is so nice, so wonderful in person, that I just can’t stand the thought of going somewhere else and then having some jerk-face doctor that doesn’t get anything.  But now, with our lifestyle changes…well I just don’t know what to do about all that.

So I am reaching out to all those moms out there who have kids with MSPI.  This is not some cut and dry thing.  A lot of babies don’t even get diagnosed.  Some doctors don’t even believe in it.  But when you are a nursing mother who cuts out all dairy and soy and notices a HUGE difference in their precious, tiny, helpless baby, well it’s pretty obvious who knows what is going on and who is a complete unfeeling idiot.

My son has some other kind of intolerance on top of the dairy, soy, and beef.  I think it might be wheat.  I couldn’t figure it out while nursing, and my son was on his way down a dark road of illness, massive puking, and pain, and so I stopped nursing him and put him on formula.  Unfortunately, it took a few formulas to figure out he needed totally broken down, behind the pharmacy counter stuff.  And still does.  I think wheat still bothers him.  I’m not sure if he feels it inside, but now that he is eating it again, he has constant eczema on his face and arms.  But despite it all, he is the happiest kid.  So laid back, it takes a lot to bother him.

Don’t give up hope.  E’s problems have led our family to a healthy lifestyle.  Without all the hardship, we wouldn’t have gotten here.  Sometimes, it’s hard to see the rainbow through the torrential downpour and massive tornado that is taking out your house….but after the storm, everything can be new, clean, a fresh start.

MSPI and Reflux can last well beyond a year of age.  Trust your instincts, they won’t lead you wrong.  Mother’s know what is best for their children.  They see what goes on with them, and know them better than anyone else.  I hope that if there is anyone out there that is struggling, that you see this and know that life goes on, that although the sleepless nights still come and go, life goes on, and life is beautiful.  Your child is beautiful.  So don’t give up!  Embrace your hardships, and trust.  “This too shall pass.”

lincoln ne photographers

My Little Lion Man

The Beginning

Welcome to Forgetti Spaghetti. One mom’s attempt to conquer her world. A pro photographer by trade, I blog often about that part of my world. I’ve been wanting to share my other experiences, document them and such, but didn’t feel that my other blog was the right place.  And thus, Forgetti Spaghetti was born.

Now you may be wondering where the name came from. My family consists of my husband, Jon, our two kids C and E, ages 2 and 1. We eat a lot of pasta.  Spaghetti, penne, ziti, basically we keep a massive supply of whole wheat pasta in the pantry.  Then we mix whatever we find in it.  Tuna pasta-my favorite.  Made with butter, milk or cream, tomatoes, and frying it all then mixing with pasta.  Yum…but not so healthy.  Lots of spaghetti with meat sauce, usually not lean, but instead what was on sale.  Basically…we are going to be saying goodbye to that lifestyle.  Forget it and embrace the present.

But there’s more to it than that.

Over the course of the past two years we have become increasingly aware of what food is going into our bodies. When C was born, she had a milk protein intolerance. By 9 months, she had outgrown it, and dairy became the main staple of her diet. Followed by meat and then fruit.  For a short period of time, I cut all dairy, including any processed food with dairy protein in it, out of my diet.  I felt good, but it was so hard. So when I didn’t have to do it anymore, I didn’t.

15 months after C was born, E came along.  I thought I knew what to expect, but I was wrong.  Not only did he have a milk protein intolerance, but a soy problem too.  And even after I cut all that out of my diet, he was still reacting to something.  Eventually, after trying so many things, he ended up on neocate formula, where all of the proteins are actuallly broken down enough that his body doesn’t have to do it.  Fast forward past being tube-fed, being on many different medicine combinations to control his GERD, and getting ear tubes and lacrimal duct stints, and we are here.  Where he is almost 12 months old, wanting to eat what we are eating.  And we are at a loss what we can actually give him.  Through experimentation, we know he still cannot have dairy or soy.  Dairy is in a lot.  Soy is in pretty much everything else.  We started looking at our own diets again.  Through a lot of label reading, we have discovered that not only are we are addicted to sugar, but we eat way too many processed foods with unpronounceable ingredients.  We feed too much of that to our daughter, and would have started doing so to our son as well.  We are now at a point where we are ready to make a drastic change.  It’s not fair to any of us to feed E a healthy diet and not eat that way ourselves.  We have researched a lot of healthy ways of living, and have decided to change our eating habits to a whole foods diet.  We are at the beginning.  Of not really knowing what we are doing.  Of trying to sift through the research out there.  Of desperately wanting to change, but not knowing how.  We are still going forward.

And so here I am.  At the beginning.  And wanting to take this journey public, so that others out there know they aren’t alone, and it IS confusing, but the best thing you can do is move forward.  I love the movie “Meet The Robinsons.”  Walt Disney’s famous quote is the theme for that movie.  “Keep moving forward.”  That’s our mantra here as well.  So here we go!