I know, I know, the suspense is killing all of you. But, of course, I have a story to tell first.
Griffin is now 4 years, 9 months old and has had a rather exciting life to date.
He was a butter baby, born in a shower stall in Pennsylvania Hospital, caught just in time by his own father.
He spent his early months being carted around Mt. Airy, going to playgroups, following the lead of his sister and brother.
He ate solid foods before they did, and survived a house that, except for a gate, was not ‘baby proof’
He had (and still has) a mellow, easygoing personality – and loves to make people laugh.
He walked by 10 months, and talked early as well – had to keep up with Callie and Zander.
He also got my milk a bit longer than the others – weaned at 14 months since I wasn’t quite ready to let go!
When he was one year old, he got a bad case of pneumonia, and spent 5 days in the hospital – with oxygen tents and all that horrible mess. That was the scariest health crisis I’d been through as a parent – and it was so exhausting. I was unable to imagine a world with a sick baby all the time.
Less than a week after hospital release, he spent a week on a Bermuda cruise with his family.
He came home, got totally weaned, and that is pretty much when the charmed life, health wise, ended for Griffin.
First he caught pneumonia again (caught in time to avoid the hospital).
Then, from the time he as about 17 months old he began world championship pooping. OK, he’d pooped always, but this boy pooped between 4 and 6 times daily. And this was really gross, really smelly poop. I’d gone through 2 kids with cloth diapers, and him as well up until this point, but the volume overwhelmed me and I went plastic (sorry Earth).
He started eating incredible amounts of food. The boy could put down more pancakes than my other two (older) children combined. He was always hungry. He stayed on the lower end of the normal curve of growth throughout this adventure – I think through sheer will - since he pooped out everything he ate within an hour or so.
We complained to the doctors and for a few months, they put us off. Then the pain started. He would complain of being sick, pretty much every day and suffered from terrible stomach cramps every night, keeping him from sleep.
We went back to our doctor and then began what I’ll refer to as…. the testing phase of Griffin’s life.
First there were lots of tests (often involving placing poop into little jars – fun!) to see if he had some kind of intestinal parasite. They all came back negative – but were repeated in case they made a mistake. One came back with elevated fat cells in the poop – this led to…
Several visits to the Gastoenterologist. She also did a bunch of tests and then put him through an upper GI endoscopy to test for things like celiac, cancer and crone’s disease – all this came back negative but he did show elevated lymphocytes – this led to….
Several visits to the Allergist. He retested the lymphocytes and they came back normal. We also went through a cystic fibrosis test (which seemed like an absolute nightmare but Griffin, now used to all this, handled it like a pro). They did regular allergy tests and then allergy prick tests (which involved the nailing about 100 miniature needles into his back) and everything came back negative.
Often, during this process, various doctors would theorize he might ‘grow out of it’.
During this lovely stage of our lives, Griffin has turned from one to 2 and his pooping is, if possible, getting worse. The frequency is up to about 6 to 10 times a day (and on one memorable day, 15). The smell is so extreme that, on one occasion, when I had to change him at Callie’s preschool (in the bathroom, at the end of a long hallway) I heard people commenting, as they entered the building. “What is that?” “Did an animal die in here?” “NO, that can’t be poop!” “I think the sewers must have backed up…” Nope, it’s just my boy.
Griffin is very easy going, with a high pain tolerance. He never cried during the cystic fibrosis test, or when he got the 100 needle prick at the allergist. Even when he split his forehead requiring several stitches, he only cried for about 5 minutes after it happened. Still, his stomach continues to pain him to the point of writhing on the floor and moaning on pretty much a daily basis.
The spring turned to summer and we went for some family fun near the Wissahickon. We were playing merrily in the stream when Griffin started to scream in pain. That kind of ‘stop your heart, drop everything’ scream you know is real. I still don’t know how, but I got Callie and an extremely uncooperative and angry Zander to leave the stream behind and carried Griffin to the car. The reason this was such a feat was that, the entire walk, he was writhing, bucking and screaming in pain and we were about a half a woodsy rocky mile away from the vehicle. It took about half an hour and then I strapped him into the car seat – still screaming in pain. We drove straight to CHOP (Children’s Hospital of Philadelphia) and I carried him (still screaming and writhing – and over an hour has passed at this point) into the waiting room. They check us in quickly but, by the time the doctors come in the room he’s passed out from sheer exhaustion. They run tests but, of course, everything comes out negative.
This spurred me to once again jump on the ‘test’ wagon.
We are referred to another Gastroenterologist at CHOP. She retested all the parasites, on the theory that perhaps he caught them since the last round (negative). We redid the upper GI endoscopy and also did a lower GI test for other diseases. Have to write a bit more about the lower GI test. It involved me trying to coax a 2 year old into drinking that chalky stuff that the unfortunate amongst you know about and then having him completely alert and awake on the table, but also totally motionless – for about half an hour. I think I mentioned he’s 2? Believe it or not, he handled it like a pro. In fact, at this point pretty much every test we take ends up with the staff marveling at how cool and calm he is when faced with scary medical testing. It was sad but true. The medical merry go round had become his world. He simply figured it was the way life should be. Oh, all those new tests? They all came out – you guessed it – negative.
We tested again for celiac, on the theory that perhaps, earlier, it was in development, but now it had time to develop and would show up on the test. Negative.
We had a couple other screaming incidents. One when I didn’t have a car available and I put him in the tub, where he literally fainted and I couldn’t rouse him for several minutes. I believe he lost consciousness. Another where we were woken up in the middle of the night by the screams and again took him to CHOP – of course the screaming stopped by the time the attending got there and tests came back negative.
We went to another allergist. He did more tests and included patch testing. Negative.
Are you sensing a pattern here? The boy is a medical mystery. A typical doctor response at this point was along the lines of. “Well, we know nothing really bad is wrong with him, since we’ve tested for all those things.” Maybe so, and I know lots of parents have to deal with kids who are really sick, even dying, so who am I to complain, right? But, still, it felt pretty serious to me.
I had experimented on my own with his diet a few times during this time. Taking out dairy, eggs, wheat, meat etc… for 2 or 3 weeks at a time all to no avail. Then I read somewhere (perhaps whilst combing the internet, library etc… yet again for a clue to solve this puzzle) that it can take 2 or 3 months for the villi in the stomach to heal enough for the effect to show. Despite the fact that, at this point, several cameras and sophisticated scanning equipment had confirmed his villi were healthy as could be, we tried again.
Taking wheat out was a major challenge but we did it and, after about 2 months, his pain began to stop, and after about 3 months, his poops went down to only about 3 per day (and yes, he still does have that many). They are still gross, sick smelling poops, but there was no pain. This all wound up being discovered around December of 2007- after over a year of total frustration and pain for my little guy and a huge amount of stress on us all. It remained a mystery – but - for whatever reason, it worked and we have stuck with it ever since.
The doctors did say that he still might ‘grow out of it’ and to try re-introducing it when he was around 5. Of course, despite our best efforts, he did sometimes accidentally get some wheat. Whenever this would happen he would have stomach cramps, major pooping and pain for a few days. When we first came to France, no one seemed to understand the whole ‘he’s allergic to wheat’ thing and did stuff like not give him juice but hand him a slice of baguette. On the other hand, the baker here bakes him fresh, gluten free bread on demand – for free.
As he grew, Griffin understood his own problem more and more and became very savvy about asking if things had wheat or not. We found many special treat recipes without wheat and he accepted that he needed special bread, pasta and cookies. I leave special treats for him at school in case of birthday parties. I travel with special snacks for him whenever we vacation and we avoid restaurants like pizza places or creperies if we eat out. If we go Italian, I hand the waitress the special pasta and ask the chef to prepare it for him. It’s never easy, in fact, often it’s a huge pain in the butt. But we make it work.
And then, just a week or two before Christmas, something happened. For the first time in about 3 months, Griffin accidentally got some wheat…. and he didn’t get sick.
We decided, after much discussion, to try giving him some wheat again over the Christmas holiday, since we were planning on being home the whole time. We started with a simple slice of baguette and butter. (“Mommie, I love it so much!”) and he didn’t get sick, again!
The next day we gave him cereal and bread at lunch – and some cookies. Still not sick!
Then, the wheat orgy began. Griffin started to eat the same things the rest of the family ate. He absolutely loved every single thing we gave him (except granola bars) and was as happy as can be. I started to fantasize about a world where I could order a pizza for dinner or have a croissant without guilt. A world where my shopping, cooking and planning would be made infinitely simpler. A world full of lovely, lovely wheat.
In fact, when I wrote the last blog, this was to be then end of it – Hooray, Griffin is healed!
But wait, there’s more.
Since that time an intestinal bug has swept its way through our happy home giving everyone a bad case of vomiting. Everyone has recovered but Griffin who started to complain about stomach cramps, woke up in the night crying in pain etc….
Could it be the wheat???
I took Griffin off it again (much to his chagrin) and called the doctor.
He said it might just be the remnants of the stomach bug but also that, in general, we had screwed up. We should have given him like, one small cracker and then waited a week. Then one piece of bread and waited a week and slowly, oh ever so slowly, built him up to eating like the rest of us if he felt well the whole time. He said that his system wasn’t accustomed to wheat and, even if he’s fine now, it can’t handle too much, too soon. I guess pancakes for breakfast, grilled cheese for lunch and pasta for dinner might have been a bit much?
I hate it when doctors say things that are so obvious. I feel so guilty!
But the fact is a glimmer of hope still shines. We wait 2 weeks and then reintroduce. Slowly, carefully, steadily… and maybe, just maybe, this story can have an end that sounds something like…..
The mystery was never solved, but by the time Griffin was 5 and a half, he was happily eating the same foods as the rest of the family!
So mote it be.