Tuesday, January 19, 2010

UPDATE: NO CELIAC?!?!??! Pediatric Enterologist confirms....

So this debacle has taken more twists and turns than chutes and ladders!  After we thought we finally knew what was wrong with Kylie - fitting the description PERFECTLY for Celiac Disease, we got the lab results back.  NO celiac disease.

Meanwhile, we had her on the nutritional regimen - Heavy Duty Probiotics, Digestive Enzymes, Vit D3 - she was doing fantastic.  I monitored her very carefully.  She was putting on weight fantastically.  She gained 1  1/2 lbs in 6 weeks -which is VERY fast for her, being as active as she is, and considering it has taken her 4 -5 months to put on EACH lb for the past year.  I began to see her cheeks getting actually CHUBBY - it felt so rewarding...


THEN, something happened.  On the same day three things occurred.  I took her in for the MMR (measles, mumps, rubella immunization), I put her on almond milk for variety, and she ran out of probiotics.  We have had on her an alternate immunization schedule, where you get the M,the other M, and the R totally separate from each other - waiting a few weeks in between.  I wasn't even thinking about that ....but....

That night and for the next 5 days were ABSOLUTEY AWFUL.  After her digestive system was performing beautifully - everything normal - she suddenly had a very adverse digestive reaction.  Everything was pure liquid.  She would wake up totally covered from head to toe - she went through 10 outfits a day - everything smelled like rotting flesh. She would have BM after BM - all pure liquid.  I was sick to my stomach.  I felt that everything she had gained was being lost.  I felt totally helpless.  Luckily after 3 days of this, one of my friends who goes to the same dr. was able to get the probiotics for me.  After one day, she became normal again.  Her appetite not quite what it was, but at least, she became normalized again.

Meanwhile we were referred to a pediatic enterologist.  I was nervous they would slap her with a steroid PX or some kind of meaningless PX - but I was wrong.  After explaining the situation, and after he looked at her, and the celiac lab results...he concluded she had a digestive bacterial infection and that the probiotics have been taking care of her.

What I DIDNT mention was that after getting treated through NAET, she can actually have wheat, dairy, yeast, gluten WITHOUT having crazy BMs.  She actually had the labwork done after being treated for those.  So, all I cared about NOW was the pediatric enterologist opinion of things as it NOW stands.

So the prognosis - she is doing fine and looks healthy.  Keep her on the probiotics, feed her a LOT (which I always have -the other day she had 4 hotdogs in 2 minutes!), give her plenty of fats - avacados, good oils (which I HAVE been),   and if she has another "episode" then I will go back, otherwards, no need.


The bad news?  She had lost 1 lb 2 ounces after the crazy post-immunization debacle.  She undid most of her gaining, so it will be an uphill battle again to pack the lbs on her.  BUT, after technically a 4th opinion on her, and with her NAET progress, I feel like we are moving forward.  She has been doing beautifully the past 2 weeks, and had been the prior 7 weeks before that.  So she had a little set back - but NOW - let the weight GAIN begin!

3 comments:

Rebekah said...

How frightening! That kind of situation would make me feel so utterly helpless. I'm so glad you have good doctors who are helping make sense of this. I hope she continues gaining weight again.

Burrowing In said...

We also do alternative vaxing schedules and only single vaxing. I was just reading the other day that Merck (who is apparently the only manufacturer of measles, mumps, and rubella vaccines) is no longer going to continue making single vaccines. It is only going to be available in the triple combo.

Trent and Karen said...

You're such a good mom! I can only imagine the amount of blood, sweat, and tears that goes into caring for, diagnosing, and properly feeding a child in this type of situation! I mean, isn't it enough to make sure our kids take their vitamins, brush their teeth, and eat at least a couple of vegetables a day?! Anything beyond that, and I start to feel overwhelmed! So I admire all you do!