The year is 2005 and this is what I looked like:
The parade of doctors, that is.
The steroids made Liam fidgety – like he couldn’t sit inside his own skin – and unable to sleep. Those two things combined to give us a kid riding the edge of breakdown in the 3 short days he was on the meds. When we called the doc about it she said to take him off for a week and then get back to her. We did so; he returned to normal – thank goodness because this was all leaking out in the classroom setting as well. We called the doc back on Monday. And Tuesday. And Wednesday. Finally, I called again yesterday and left the smack down message and they called back. Basically, the GI swears she’s never seen anyone react in this manner to the meds. I think that’s shoddy medicine. It’s BASIC MEDICAL KNOWLEDGE that steroids do weird shit to people. They have their uses but they also have side effects. Even the short actors do and it all depends on personal body chemistry in terms of what can be tolerated and what cannot. I don’t know how she made it through medical school and specialty training without knowing this. For her to claim that she’s stumped by his reaction makes me want to throttle her. But, because this condition is not well understood or known, there aren’t really alternative treatments. Her only suggestion was to make an appointment to see an allergist. “Go see the allergist and see if they have anything they can do.” I suspect they’ll start with a scratch test for environmental allergies. I called the allergist to make an appointment and there is an 8 week wait. TWO MONTHS. We have to wait until March 19th. We’ve been navigating these waters since November. It took until January just to rule out Celiac and get an answer about what’s really going on. Now, the GI finds herself stumped and we have to wait it out another two months before we get more information and can move forward with treatment (I hope we can move forward, that is). I’m still stumped though. Yes, and allergist is going to understand the medications better because they prescribe them more but they way they prescribe it requires a nebulizer and that isn’t the way Liam was told to take them. Furthermore, even if the allergist can pinpoint an environmental allergy what the hell do we do then? Put him on Claritin? How does that help his esophagus? I’ve had environmental allergies all my life and I don’t see how treating those are going to help his digestive system (except to knock back whatever allergic reaction he’s having – which I understand but the reaction is severe enough to cause damage, hence the need for steroids). I also don’t see why we can’t just change his GERD medication from Prilosec to Zantac or Pepcid. Those two medication are anti-histamines. If we’re dealing with allergies + GERD, I see a two birds/one stone situation. Finally, the big question still left unanswered is “If we never identify the allergy that is the underlying cause, will this keep happening to him?” They claim we can’t ignore the condition but the meds they want to treat him with are worse than the disease. Rock, hard place, us in between.
- Winter has finally arrived. We have a couple of inches of snow on the ground and it’s colder than a witch’s tit outside. Of course, it showed up at exactly the right time to cock up my sister-in-law (and family)’s trip up here to visit this weekend so they had to cancel. We were bummed. Yet, later this week it’s supposed to be in the 40’s again. This winter is bipolar.
- Liam is not tolerating his steroid treatment. He was on it for 3 days and it screwed up his sleep and made him fidgety and jittery – so much so that his teacher noticed it at school. It also gave him a wicked case of laryngitis. We talked to his doctor and she told us to take him off it for a week to determine how long it would take to get back to baseline and then call her back. We call on Monday (tomorrow). Frankly, I’m not sure she believed us that it was the medication making him crazy but since pulling him off it he’s made a huge improvement in behavior and sleep so YES it was the steroids screwing him over.
- Of course, this means that I don’t know what the hell is going to happen with his treatment from here. The treatment is steroids. Period. What they’re going to do with the information that he can’t tolerate them? I can’t predict. The one piece of good news is that the blood work on food allergies all came back normal. No food allergies. Huzzah!
- Jamie is being introduced to the wonderful world of potty training. He’s been walking up to me, pointing at his diaper, and telling me “wet!” or “poopy!” as appropriate. Sorry kid, if you can tell me what you did in there, you can do it in the potty instead of a diaper. So far success is limited – he’ll only pay attention if he’s naked from the waist down. Otherwise, there’s pee in the undies. We’re working on it. I’d love to see him trained (mostly) before his birthday but it took over a year to completely train Liam and I am unclear what will happen with Jamie. I think at this point I need to be more consistent with him than I have been. I’d forgotten how much I really dislike this stage but in the same breath I’ve been doing diapers non-stop for 7 years now and I am SICK TO DEATH OF DIAPERS.
- In other Jamie news, his speech is making another leap. We’re getting longer phrases that are more intelligible. The other day I got, “Brown bear, brown bear, what you see?” That’s probably the longest phrase I’ve gotten so far. He’s also started singing along with various things – as though he always knew the words but could never get them out fast enough to sing along before now. So, progress is being made.
- Jamie is also FINALLY breaking his two year molars – 3 months before he turns three. Of course, all four of them are pushing through at once making him extra special miserable. Two of them have poked the points through, two are just painful lumps, and all of them have the large flat surface of the tooth to break through. Teething and potty training and speech advancements – that’s Jamie lately.
- As for the adults in the house – well, we just keep plugging. We got an impromptu night out at Piper’s Pub last week that was quite welcome. Otherwise, it’s life as normal. Work, childcare, housework, dog care, etc etc etc.
Driving home from getting Liam’s blood draw today, we could see the outline of the moon in the afternoon sky.
“Hey Liam – look at the moon!”
“Cool! How come it’s up, Mom?”
“Well, sweetie, I’m not entirely sure about that. You could ask Daddy, though, since he knows more about astronomy. I’m going to guess that the moon is always there we just can’t always see it when it’s light out.”
There was a bit of a pause from the back seat. Then…
“I’m not saying you’re dumb, Mom, it’s just that Daddy is smarter that you are. I’m just saying.”
Well then. Glad I wasted 4.5 years getting a college degree. It’s amazing I can mange to drive a car and work that laundry gizmo in the basement. I think I’ll get myself a helmet to wear on a permanent basis. Ya know, because I’m not too careful being not as smart as Daddy and all that.
I suppose he could have told me my butt was too big, but somehow that seems like it might not have been so bad.
We got a call from Liam’s gastroenterologist this evening and guess what? HE DOESN’T HAVE CELIAC.
*deep sigh of relief*
However, he does have a condition called eosinophilic esophagitis. If you click on the link, you’ll get a run down of what this condition is and how it’s treated. It’s not a very well understood disease and it seems as if treatment is constantly evolving (I say that because everything I read says something different).
Anyway, the short explanation is that the root cause (they think) is some kind of allergy. That allergy can be food borne or environmental so pinning down the underlying issue is often impossible. The doctor said that 75% of her patients that have this disorder never pin down the allergy. However, we are going to be doing some blood tests to check for common food allergies just to see if something does pop up.
In the meantime, we can still treat the issue. He’ll remain on the Prilosec that has been making such a difference for him and we’ll be starting a 6 week course of short-acting steroids. I wasn’t initially happy about this because steroids? Not great for bone development. But this isn’t cortizone or prednisone. He’ll be on something like FloVent or Pulmicort and those drugs are much shorter acting and therefore don’t have the same side effects. They are such short actors that he’s not allowed to eat or drink for 60 min. following each dose because if he does he’ll inactivate the meds. The steroids will bring swelling down and allow the tissues of his esophagus to heal.
After he completes the course of steroids, we’ll go back to the gastroenterologist for a follow up appointment to discuss how Liam is doing and if there are further steps to be taken.
I’m not jumping up and down excited that he has this. Chances are good that we won’t be able to determine what caused this in the first place and if we don’t – does that mean it’ll keep happening? I worry about that. In the same breath, it’s not Celiac. It’s not an autoimmune disorder. It could be so much worse and leave him open for so many other diseases. This? This I can deal with.