though I’m not sure barley loves him.
He’s eaten it the last 4 nights for dinner, just straight up cooked in vegetable broth and a little butter. However, he’s itchy to the point of raw. 
At the same time we started oats/barley and rye, we had to change his miralax and ex-lax use, pretty drastically.
Oat was not successful at all.
Rye James won’t eat, he puts it to his mouth and then hands it back to us.
Barley, he loves but we’ll see the effects - itching raw makes me dislike it.
Hopefully we hear something soon.
He’s scheduled to see the DR in 2 weeks-the 12th of February.
Nothing so far today
February 1st, 2010
I’m so frustrated.
This food allergy stuff is for the birds.
I’m off to yet another store today to try to find something to feed James that is wheat free, but not gluten free. By the time I successfully find something, it’ll be Thursday when we have to let the DR know how it went.
The health food store could think of one item only, and they no longer sold it, that was wheat free but not gluten free. James is getting worse by the day, though we are glad the Dr isn’t jumping to shoving things down his throat and putting him under, he’s just not good this way.
E gets her stitches out today, she was supposed to yesterday but we were gone most the day as my Dad had surgery. He was back in this morning to have another as he was bleeding too much, they had to go back in and try to stop it.
I think this household is drained to points of exhaustion.
January 26th, 2010
We got a nurse call on Friday about James, his test results are in and the celiac is showing normal again-however it was before, but that marker was off.
The Dr wants us to have him on a wheat free, but not gluten free diet for a week to see how he does. To rule out gluten as an issue. However, we found out last night and today-there is like ‘nothing’ that is such. So I need to ring back the Dr on Monday and find out what we should do - we want him better… quick. He’s acting out so much, and irritable and upset over his tummy and his itching and it’s just not fair to him any longer.
However, if she needs to do the endoscopy he can’t be on gluten free foods-and we got some to try to get him off wheat, so I dunno what’ll happen Monday.
Evelyn is doing OK with her stitches, she still says it hurts on occassion but I think she more is telling us it’s there. She’s meant to get stitches out Monday, but my Dad is having surgery that day and I’ll be gone most the day for that-so we’ll have to see if we can fit it in. I’m sure Tuesday will be adequate.
We got information on screening J&E for Early Childhood on Friday-so we’re setup to do that in March. I can’t believe they are old enough for that already, but after some research I found that WI is actually starting earlier, finding it more helpful.
January 23rd, 2010
So our first born had her first stitches.
James went out to a work function and was gone till just before J&E went to bed normally-about 9 minutes actually. He was so glad to get to see them, and they him. They have this thing they do- mom doesn’t do it quite the same, “go-go-go”.
So they got stripped down to their diapers and gave hugs all around, and started getting excited, running around doing their go-go thing. James & I were talking-I had on my new glasses and we were discussing them.
All of a sudden E is screaming - we turn and she’s gushing dripping spurting blood.
J is screaming, wait, wha, wait…. hes’ confused.
James runs to her, puts his sleeve on her forehead and I grab a towel.
James dresses J and I wrap E in a blanket and we hit the ER. She needed pressure on it as she was still bleeding quite a bit.
Almost 2 hours later, we are home, with two overtired kids hopped up on cookies from the vending machine… and 3 stitches in E’s forehead. She tripped as she was chasing J and smacked it on our footstool/ottoman which is now in the basement.
I 100% truly believe my kids are cute now though, lol.
Every nurse, Dr and available employee in the general vicinity had to come over when we came out of the room. Gushing over how cute they are as they stuffed their hands full of stickers.
We’ll have to go back on Monday and get the stitches out. She’ll likely have a scar, but hopefully it’s healed properly by the way it was stitched up. She was AMAZING at the ER. She held still and was very calm as they did their stuff. She was not a fan of the large bandaid type thing they put on her head to numb it to put the stitches in, but it was more I think the sensation it gave her.
She is doing OK today-she’s had a slight fever and says it hurts, but only took the bandaid off once.
James is OK.
He’s having so much trouble, and I just want this over with.
I’m asking to schedule the Endo right away, when we hear the Celiac results (tomorrow I hope!).
I don’t want to do this another day more than needed. It’s not fair to him.
January 21st, 2010
So James (lil) saw the GI Dr again yesterday, for his 2 month recheck.
If you remember, we put him thru a total clean out, followed by daily maintenance and a rescue plan for anytime he didn’t go bathroom in a day.
The Dr we saw last time wasn’t there this time (we see someone locally who travels 3 hours 1x a month to see ppl in our area- these two Drs alternate/flip/share).
So this is the result.
They drew blood to check for celiac again, those results will take about a week to learn.
They did that now, as J’s been eating wheat for 4 months, the results should be reliable. Of course, there is the chance it’ll be the same-and be potentially a false negative….
They did an Xray which showed J has some issues that need addressing, so we are doing a new version of the wipe out - hoping to breakup and get rid of that. This might be the cause for his other issues - like a slip and slide action. So we do the worst part this weekend, and continue for a week with a smaller dose-then call the Dr and if it’s not working, she’s adding a different medication/further instruction.
Lastly, if the celiac is a positive result, James needs an Endoscopy. This will happen at a hospital 3 hours away, and they’ll put James to sleep and do biopsy are areas of his digestive tract/ect. This would be to confirm the positive result with visual confirmation of damage to his tissues from the gluten.
If the test is negative, he likely will still need one especially if there is no change in things when we see the Dr again in February, this will be more exploratory and looking for a cause.
This means James is eating wheat still, until all this is cleared up.
His ezcema and dermatitis is getting much worse as a result of the weather and being on his fourth month of eating wheat products. We have an anti-itch oral prescription the allergist gave us to help stop that, so we’ve cracked that open. It’s expensive and thankfully she gave us quite a few sample vials. We tried Aveeno lotion but it’s only made him more scratchy, even though it was meant to be helping ‘anti-itch’. We are back to just using the prescription lotion to try to clear up the raw areas he’s scratched.
I cringe at putting food into his body I know to make him unwell for another month or so.
The Drs agreed with us that there are studies that show that James’ behavior is not uncommon when he’s feeling bad, from that of someone diabetic who has a crash in sugar. When he’s having a bad stretch / cycle, he can be very irritable, cranky and doesn’t listen. This is much different than just being 2, and I was very glad to hear I wasn’t totally insane to think that there were changes in his actions.
Today he’s not much for eating, but we are working on clearing out things, so it’s to be expected.
I/We just SO want this over, and to just get on a treatment course for whatever it is - even if it’s just the wheat allergy. It’s crazy to even think about potty training when you can’t control your own functions and James is actually ahead of Evelyn in readiness. He does use it on occasion already.
January 16th, 2010
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