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.