One Year!

October 28, 2011: Carter’s first day of GAPS. That was almost a year ago! So much has happened in that year. Today this is an update for all of you who have hoped with us along the way, and it is hope for so many of you who are starting this GAPS journey.

This past year has been a whirlwind of changes.  When we started this change for Carter, who was 2 and a half at the time, we had no idea how long it would take or what it would do to us. Would it bring us together or would it rip us all apart? Those first 3 weeks were some of the scariest days of my life. The fear that I had made the wrong choice was tangible. I swear it sat there in the room with us.  I wasn’t sure he would ever eat normally. He ate the same 3 things day in and day out. Week after week. Month after month. Shortly before starting GAPS, he stopped growing and gaining weight. He didn’t make any changes for a YEAR! He wasn’t talking like he should have been. His coordination was lacking.

So what did we do? We waited. We tried adding in GAPS approved veggies and they failed. We tried changing up his diet at all, and it failed. And that’s the way it needed to be for him. That was what his body needed. How I wish I had trusted and listened to what his body was telling me, in those early months. Sure having a 2 year old whose diet was so very limited was hard. Trying and pulling foods over and over was hard too. So I stopped. He was eating pumpkin, butternut squash, zucchini, beef, lamb and wild game. And that was it. And I didn’t try more. I let his body lead me. We did this for months. And months. And I stopped listening to people tell me that I wasn’t doing GAPS the right way. Rule number one of GAPS, it is an individual diet. You have to follow the stages in a way that works for you. I ignored the doctors who insisted time and again that his body needed formula. And then something happened . . . he grew! An inch in 3 months! Without commercial formula. Without growth hormones. Without synthetic vitamins. With nothing more than real food.

And something else happened. I got brave with food.  Something in me, something in him, told me to try. When he asked for foods that were somewhere, anywhere on the GAPS approved list, I gave them to him. And his body didn’t react. He didn’t shut down. He slept. He smiled. He pooped. And he ate more. When he asked for potatoes, I gave him some.  And nothing happened.

We are going at a steady pace, allowing his diet to expand. He’s eating broccoli, turnip, apples, blueberries, strawberries, hot dogs, carrots, watermelon, an occasional potato, and bananas; along with all the other foods he was eating. He still loves his broth. He still loves his meat. And he loves that all this food is HIS!

GAPS has given me the gift of really learning and understanding his body. Carter still sneaks food, and when he does, he gets a rash on the back of his neck. And he gets a little backed up. But he DOESN”T vomit. He DOESN’T get upper respiratory infections. He DOESN’T have 20 trips to the potty. He DOESN”T have bleeding, burning skin.

So what does this all mean? It means GAPS worked. It means GAPS works. It means that I may soon be able to say that Carter once HAD FPIES. It means that we are going to try dairy again soon.

If you are thinking about trying GAPS, do it!! If you’re lucky enough to have found it while your little one is still a baby, even better! Try the homemade formulas or Baby GAPS, if your little one is old enough.

If you have started GAPS with your child, and you are still in the darkness and confusion that GAPS brings, DO NOT GIVE UP! Don’t let the doctors or your family or your friends or the stranger in the store tell you what’s best for your child. You know what’s best your baby. You really really do.

For every excuse, every road block to GAPS, there is an answer. Once you make the choice, the answers will come. I have learned that Home has nothing to do with the walls that surround you. I have found joy in feeding my family real food. I know what it means to be Strong now. I have felt what it means to be truly, unconditionally loved.

For me, I had to hit rock bottom with Carter’s health before we started GAPS. I knew that Carter was going to die if we did nothing. I was afraid GAPS would kill him with all its meat and bone broth. So what did I have to lose in trying? If I didn’t try, we would lose Carter.  If I did try, he might live, might grow, might thrive. And he did. And he has. And he is. He really is. It’s still a journey and it may always be, but now I think I know where we are going.

 

"I'm moving on. At last I can see, Life has been patiently waiting for me."

“I once was lost, but now I’m found. Amazing Grace, how sweet the sound.” I heard this song last night and it awoke something in me. It has been awhile since I last updated this blog. Carter turned 3, summer vacation began and somewhere in it all, I lost my way. I was struggling with, well, everything. I was losing my faith in the GAPS diet. After numerous doctors telling me that the reason he wasn’t growing and gaining was simply because I wasn’t feeding him correctly. They threw formula at me, brushing aside my concern about it nearly killing him and telling me that if I wanted him to grow, this was my only option, that or a TPN (Feeding through an IV tube) They were trying to scare me, and it worked.

I stopped calling friends, for fear that they would recognize instantly in my voice that everything was not “Alright”, as I so often told them. I was overwhelmed and lost and scared. We tried to introduce some old safe foods, for Carter. Some failed horribly, while others were a nice addition. They didn’t follow the GAPS stages strictly, but they were GAPS legal foods. We learned the hard way thorugh stolen food, that corn was a big negative for Carter as well, a food he practically lived on through the second year of his life.

On top of all of that was the constant fear of another impaction. In June he was x-rayed again and it showed that he was yet again impacted. I felt like I had failed him. The GI doctor wanted him on Miralax, and a high dose too. Miralax is essentially plastic that the body can’t digest. He was a little boy with a super sensitive GI tract and they wanted him on plastic?!? For the next 6 months to a year to help retrain his intestines to move stool through. I hated the idea, but what choice did I have? The fear was paralyzing. I knew GAPS had a constipation protocol, but it would take time. And I wasn’t sure we had that. So we started the Miralax balancing act. Too much and he got stomach spasms and pain, too little and didn’t pass much, although he tried and tried. And cried.

Just when I thought my plate was too full and I couldn’t possibly take another step, I was thrown an incredibly painful and scary curve ball. My oldest son, who is 6, began to have worsening behavioral issues. It made FPIES seem like a walk along a beautiful sunlit beach. I spent countless hours researching and reading. We were either at the doctor or on the phone with one, every single day. It was a living nightmare for everyone in our home. It made struggles with food seem so trivial and unimportant. I just wanted everyone to be happy again.

As we worked through this new obstacle, my guilt over Carter began to lessen. I took some of the great advice I had received and positive feedback from others and took some big steps to help Carter’s impaction issues without Miralax. We introduced fermented coconut water and apple cider vinegar. There were improvements right away and signs that I was doing the right thing for Carter, even if the doctors didn’t agree. He is still on the Miralax, but I am hoping it is on it’s way out.

We survived through this chaos and I believe we are a better family for it. Our marriage is stronger and our lives are fuller. I set out this summer vacation with so many expectations, so many things I wanted to do for our family. Life had other plans for me, for all of us.

With school less than 2 weeks away, I’ve started to pull myself back up. I no longer feel numb and overwhelmed. I am truly excepting my life, with it’s imperfections. I am allowing myself to fail without guilt and to start anew every morning. And I am reminded that I am not alone in this, even when it’s literally impossible to leave the house.

http://motherhealer.blogspot.com/2012/08/the-beautiful-act-of-cleaning-broth-pot.html
An amazing blog post from a fellow GAPS mom, whom I have never met, who helped me see the joy in making that much dreaded broth.

And those moments when all 3 of my little wonders are laughing and giggling, well their noise is infectious and I’m allowing myself to slow down and giggle too.

An Update or A Rant, or Possibly Both.

Carter’s peace from pain lasted for all of 24 hours. WE learned after a GI appointment that he had a stool impaction. So we tried to clear it. With Milk of Magnesia. With Miralax. With enemas. With Dulcolax suppositories. He was taking Tylenol around the clock and Zofran to help him sleep. We had another x-ray done. The impaction was considerably worse. This entire time, over a week, we were trying to clear him out, and he was going. Apparently it wasn’t enough.  So we tried magnesium citrate. That’s the stuff they give before a colonoscopy to clear you out. IT still wasn’t working. He was still in pain. We saw the GI on Thursday, April 19. I practically begged him to admit Carter and clear him out at the hospital. I was getting scared doing this at home. He was showing dehydration signs and was still in a TON of pain. The doctor said to wait another 2 to 4 days. If Carter was still in pain, call and they’d get him admitted.

I called Sunday morning, as we hadn’t seen any improvement. They got us a room ready at 1 pm. We were checked in and settled by 2:30. IV fluids were started and blood work and x-rays were taken to give us a baseline to compare his progress. The process of cleaning him out involves placing an NG tube, a small tube inserted in the nose that goes down into the stomach, and pumping him full of a product called GoLytely.  This works similar to a garden hose on a dried up pile of dirt. It washes over the impaction, eventually ridding it all from the body. The first attempt at the NG tube was a complete failure. They used no numbing agent, couldn’t get it placed correctly and caused him to bleed. We made the decision to stop and see if it could be done with some sort of sedation.

The next morning we met with an amazing GI, or so we thought, who wanted to get Carter thoroughly checked out with GI, Endocrinology, Allergy and Immunology to help find both the cause for the impaction and look into his lack of growth. They were going to schedule a lower endoscopy as well.  The NG tube was successful put in the second time around using medication to help Carter relax.  The GoLytely was started Monday afternoon around 3:30.  It is supposed to take approximately 4 hours to work. It took TWELVE hours before anything happened. Is it because he was so backed up or because there is an issue with his bowls? We don’t know. Why don’t we know? That’s the BIG question.

The doctors were great, until I mentioned FPIES and specifically his shock reactions. Once I told them that, the doctors gave up on helping us in any way beyond clearing the impaction. The lower endoscopy was canceled. None of the specialists ever came to see us. The GI doctor NEVER came back.

It took 36 hours for Carter to clean out.  A painful process that I will spare you the details. Just know it involved full linen change of the bed every time he pooped. By Wednesday afternoon, Carter wanted to get up out of bed and play for the first time since we got there on Sunday.  He was feeling and looking so much better.

The pediatrician working at the hospital came in to get a progress report and to see about sending us home. What happened to the other tests they were going to do? What happened to the rest of his care? She told me that since he’s not really going into shock i.e. anaphylactic shock, that I was unnecessarily restricting his diet. That his FPIES diagnosis wasn’t a REAL diagnosis at all. His impaction was purely my fault for not feeding him and his lack of growth was due to malnourishment.

She went on to say that we needed to have him followed by a GI doctor who could help figure out his digestive issues and make a real diagnosis.

                Oh, you mean the GI doctor who told us he was growing fine and to just keep doing what we were doing? The GI doctor who told us there wasn’t anything wrong with him? Ok, I’ll make another appointment.

                Have we tried Elecare Jr? Yes, he reacted to it. No, it wasn’t that he didn’t like the flavor; it made him throw up and poop blood. Should I have continued it?

                I asked the pediatrician if she’d like to call the doctor at Stanford who gave us the diagnosis. No, she didn’t think that would help her at all.

                She gave us the green light to go home and we RAN.  Carter didn’t fit into their little box of what was accepted, so instead of expanding their box to include him, they threw him out. They pushed ALL the blame on me and walked away. We have since filed a complaint with the doctors on staff and have a plan in place for any further visits to that hospital. I won’t have my child’s care limited because some doctor or 4, think I’ve made this all up. Type “FPIES” into any search engine and you can see it’s a real issue. The word shock sent them running. So call it whatever you like, but he goes completely unresponsive when he eats certain foods.

I will say that the rest of the hospital staff was amazing and made our stay as enjoyable as a hospital stay can be. We have since found another Endocrinologist who thinks that the fact that he hasn’t grown in almost a YEAR, is a BIG deal. She’s running some further tests on his liver function as well. She had the same blood work results as the doctors did in the hospital. The doctors looked at his numbers, with levels that were troublesome, and dismissed it all.  OUR pediatrician was outraged and dumbfounded that anyone could look at his blood work and growth chart and NOT see a problem.

We have an appointment with GI in June and appointment at Stanford with our Allergist in late July. We are also working on getting an appointment with a Stanford GI who might take this all more seriously. Otherwise we will go into our GI appointment in June armed with all the information she will need to take him seriously. Or we will walk out. The gloves are off.

The Storm Has Hit

A year ago yesterday we were sitting in a doctor’s office in New Jersey. That started a new chapter of doctors and specialists and tests. We closed that chapter and found ourselves in a time of quiet for Carter, a time where we thought we had found our normal.  We were sailing along. But that storm I mentioned in my last post found us and has hit us hard.

We spent yesterday in the ER with Carter. His tummy pain had gotten increasingly worse, causing him to vomit. The screaming was just too much so we took him to get help.  Part of me is still surprised that they helped him. Maybe it was the letter I bought from the doctor explaining what FPIES is and how to treat a reaction, although he wasn’t having a reaction. 

We got right in, no waiting. They drew blood, placed an IV line and did an ultrasound. They gave him Zofran for nausea and IV fluids. Within 10 minutes of the Zofran entering his system, he began to perk up! And let me tell you, I was terrified! Giving him a new medicine, risking a reaction. But we were already in the hospital and that seemed like the safest place to have a reaction. But there was no reaction, just a happy Carter. It’s been so long since I’ve seen a happy Carter!

We went home that afternoon, after being told the ultrasound and blood work both came back normal. Our pediatrician called to check on us in the ER and has already called this morning. We have an appointment on Friday with a new GI doctor. We are determined to find the cause of all this pain.

Since to Zofran worked so well, it makes me wonder if some of him tummy pain complaint, is his way of communicating that he’s nauseas. Either way, it helped and so did the IV fluids. He slept ALL night last night, from 7 pm to 7 am, ALL NIGHT!

He is a happy boy this morning. No crying or fussing. But I must be careful what I say, that’s how yesterday started.  It’s the Murphy’s Law of Moms. If you deep clean something, they will throw up on it. If you comment on how well they are feeling, they will get sick. Well he threw up all over the newly cleaned couch cushion after I’d said he seemed to be feeling much better yesterday.  So today I will just enjoy the happy moments and hope they stay awhile!

The Calm Before The Storm

I’ve been debating putting this update on here for silly reasons, like fear of judgment, but there have been several people asking for updates, and this blog is about Carter’s journey through this maze, so here ya go!

Carter hasn’t gained any height in 7 months, which is concerning. He has gained weight but is having trouble keeping it on; he keeps bouncing between 27 and 29 pounds. He has been 27 pounds since September. His pediatrician did a blood work up on him to test for metabolic disorders.

Due to the results, we have been referred to a Pediatric Endocrinologist. They are concerned with his Growth Hormone levels. Two tests were run and both came back on the low end of normal. These tests are not very reliable on kids under 5, so that is why we will be looking further into this to make sure we aren't missing anything. Luckily this specialist is local and our Pediatrician has already talked with her over the phone.  Our appointment is scheduled for April 20.

The testing also showed that there are still high levels of inflammation in his body. His numbers were 3 times higher than the normal range. Normal is 0 to 15. He tested at a 55. The test is called an ERS. The test only tells us there is generalized inflammation, and not the cause of it. This does help explain the chronic pain he has been in lately. Our pediatrician thinks that this may be telling us that his gut issues are not as well controlled as we thought. This may mean we go back to Stanford, but I'm not sure yet.

Thankfully our Pediatrician is taking this very seriously and thinks it's time to look further into any other issues that may be affecting Carter. We also saw a Child Psychiatrist who is helping us deal with Carter's crazy food stealing. He is also taking this all very seriously and seems like he will be a good advocate to have on our side.

So, all of this to say, there may be something else going on and there may be nothing else going on. But the doctors are looking! Thank goodness!

Why was this so hard to post? Because when I first got the call from our doctor, I cried. And cried. And cried. I couldn’t even talk about it. My mommy instinct says there is something else going on. It has said that for months. And now finally, the doctors see it too. Those test numbers show that my little one really IS in pain, ALL. THE. TIME. His growth stale started before GAPS and even though he’s eating a good deal of food, it’s still not breaking the stale.  He wakes up 3,4,5,6,8,10,12 times a night complaining of pain or just screaming. He doesn’t need new clothes or new shoes for the summer because everything from last year still fits. A soon to be 3 year old in 18 month clothes. At least he likes those summer shirts!

So now we wait for the next wave of our medical saga. We slowed down for awhile and things seemed to have calmed down. Now I realize, that was just the calm before the storm.

The Pile

“Mom, I’m out of underwear!” “Mommy, this is my last clean shirt!” “Mom, I don’t have any pants.”

“Honey, are there clean socks for me somewhere? Clean underwear?”

This is an everyday occurrence in our house. The boys even know to tell me when they are running low on underwear so I can make sure to wash some for them. Laundry has fallen by the wayside, way, way, way by the wayside. The clothes get washed, but getting folded and put away is a whole other story.

There was a time when this would have driven me crazy. I would have stayed up at night until it was all put away. I would have never even let it get this far in the first place. I would have made the time for the laundry. I would have been embarrassed for all of you to see this, and the huge pile of dirty clothes in our closet that need to be washed.

I could offer up excuses about a sick kid and a tired mom. Or lack of proper planning. Or ill-placed priorities. Or too much time in the kitchen. Or so many other things. This isn’t about excuses. This is about real life and it is what it is, and nothing more.

It’s true that Carter does go to preschool twice a week and he does go to bed at 7 pm. It’s true that my husband gets home around 5:30 and sometimes he even works from home.   It’s true that there is time in the day to get this done. It’s also true that those moments when Carter is asleep, he is also safe. Sleeping is safe. He cannot use his ninja skills while he’s sleeping. At least not yet.

So for now, this is my life. And I’m ok with it. If it bothers someone that my kids might have wrinkled clothes, well they are more than welcome to come put the clothes away and straighten up the laundry room and dust the ceiling fans and the banister and the window blinds while they're at it.

For all of you sitting there with your own mountain of laundry staring at you, just dump the next basket of clothes on the pile, dig through and find something that matches, fluff the wrinkles out in the dryer and keep going with your day. The pile will be there tomorrow, but that little voice asking you to read one more story just can’t wait. So go read that book. And after the kids go to bed, just turn the light off on that pile, find your husband and snuggle up bed. The laundry really CAN wait!

A Poison Plan

FPIES presents so many situations that I never would have considered.  2 days ago Carter was in the garage and got hold of some chemicals. In his obsessive desire to eat anything and everything, he ate some. How much? I wasn’t sure, but it obviously didn’t taste good and he spit it out. We quickly consulted the product about what to do in case of ingestion.  The product said not to induce vomiting and to give the 2 glasses of milk or water. I washed his mouth out and got him to drink some water. I don’t think he swallowed any and is doing just fine.

But this got me thinking, what are the common recommendations for ingesting chemicals? After some research, there are a lot of recommendations to consume 2 to 4 glasses of milk and eat bread. A simple solution for your average kid, but a terrifying prospect for an FPIES or other food allergic child. It then becomes a game of the Lesser of Two Evils. What will the chemical do to my child? I know what consuming that much milk or bread will do to him; weeks of pain,  loose stool, rash, inability to absorb nutrients, weight loss, sleepless nights, respiratory infection, the list goes on and on. Certainly some chemicals can cause serious side effects as well, but a lot of these household products expect that you treat these things at home, that they aren’t too serious. For us, they would be very serious. I think our only choice would be to call an ambulance and have him admitted so they could pump his stomach.

Until a couple days ago, I never even thought to have a poison plan for Carter. I thought I’d just contact the Poison Control Center and follow their lead. Now I realize that Carter’s situation is outside of that box as well. We have been walking this maze for almost 3 years, and I am still learning as I go.

All products have an MSDS, Material Safety Data Sheet, and by law they must be available for free. You can find them by searching “MSDS” and the name of the product in your internet search engine. The Poison Control Center is available 24/7 at 1-800-222-1222. They also have an iPhone app that will connect you directly to the poison control center with the push of a button. You can find the app by searching “poison help”. The app is free. Do you have a plan for your child?

A Probiotic Update

Sorry I haven’t updated in awhile. We’ve been plugging along here. We had to pull spinach because his tummy just isn’t ready for it. He can only do it in small quantity every once in a while. We FINALLY got him started on a probiotic, which will help his body fight the bad bugs in his intestinal system and build up more good bugs. We are moving very slowly, but his body is adjusting well. We used the recommended dose of one capsule and spread it out over 8 days.  We have seen some symptoms: eczema flares on his face and little red painful bumps sporadically spread across his body. The worst of these has been the rash that’s developed from his urine. The areas where his pee comes in contact with his skin turns into small red welts. On bad days, it hurts when he pees and his entire groin is covered in rash. We’ve made great friends with Aquaphor, or as Carter calls it, Butt Jelly! As difficult as this is to watch, it really is a good sign. It means his body is ridding toxins through his urine. It means the probiotic is working. It means we are making progress.

Our other big news is that Carter has hotdogs!! We spend last Saturday making Carter homemade sausages, which he calls hotdogs, a snack just like his brothers. We stuffed them with safe ground beef, a little onion and some salt and pepper. Then Daddy smoked them, so now Carter has smoked hotdogs. He doesn’t appear to be tolerating the casings, which were pork that we picked up from the local butcher shop, so I’ve been removing them before feeding him. Either way, he doesn’t care. He loves his hotdogs!

Ghee and Guilt

I should be napping right now.  Carter was up all night last night with an all too familiar cough. The one that cannot be treated, the one that causes him to gag and throw up, the one caused by a reaction.

In a moment of weakness, I gave Carter ghee or clarified butter, mixed with a little honey. It was about a teaspoon, and he loved it. When you clarify butter, you removed all the lactose out of it and are left with pure milk fat. A lot of people do well with dairy in this form, even though they can not tolerate it in other ways.

I was looking for more fats to get into his body, something to help him feel full. The screaming for food and stealing and eating food off the ground, wore me down.  But we now know that Carter is not ready for dairy and won’t be any time soon. We also know that we need to start a probiotic, and I will order Gut Pro as soon as it’s back in stock.

But what about the guilt? What do I do with that? I have a very sick little boy with deep circles under his eyes and rough red cheeks and a cough that makes him cry. Someone told me today that guilt isn’t always valid, and that’s true. But it sure is easy! It’s easy to wallow in the guilt and the why me’s, it’s much harder to dig down into yourself and find the strength you need to overcome, to keep fighting, to keep living.

I have been waiting for this to go away. To get a knock on the door with a certified letter that says “Carter can eat anything now. He’s all better”.  I haven’t wanted to acknowledge the truth. And without the conversation I had yesterday, Thanks Nichole, I don’t know when I would have admitted the truth.

I have a sick little boy, a chronically ill little boy and he’s going to be like this indefinitely. He and I are on a journey together and we are bound to take wrong turns and I need to be ok with that. There is no map for us. No one has journeyed this path yet. We are the pioneers traversing this new land, living on little more than fear, adrenalin and hope. It is no longer about the destination because we don’t know where we will end up or when we will settle down.

The important thing is that we are moving, even if it’s backwards sometimes, we are still moving. The fear has not paralyzed us.  The adrenalin and hope push us onward. We are still moving and if we are still moving, then we are still alive.