Wednesday, May 23, 2012

18 month checkup time.

Today, we saw our wonderful pediatrician for Addison's 18 month 'well-check'. I scheduled two appointment times back to back so we would have plenty of time to chat.

The first part was the usual, weight, height and head circumference. We weigh her several times a week so I knew she had gained a significant amount of weight, but I was still thrown for a loop when she got measured..... Addison has grown FOUR INCHES since January! That makes her height 32" and the 50th% for her age.... she was right around the 10th% most of her life. Her head circumference is 10-15%, which is holding steady where it has been. But the weight!! Oh my goodness, sometime I will post a copy of this kids growth chart so you all can appreciate just how much weight she has put on. She is now 20.5 pounds, which is ON the chart (barely!).

What does this mean? Well, you all remember she has been on an elemental diet since January - nothing but Neocate formula to eat. Clearly, its working because she's gained 5 pounds and 4 inches since then! The good news is, its working - the bad news is, its working. We are so happy to see her thriving but it means we are going to have to keep holding food from her even longer.

The truth is, with results like this.... it seems pretty apparent we are dealing with an undiagnosed metabolic disorder. That is our peds official thought now. Addison's regression was caused by a buildup of toxic ____ in her system. The scary part is that we don't know what the blank is. He pointed out that a child's brain development is most critical from age 0-3. He said he wouldn't want to risk further neurological damage by playing guess and check on what the problem ingredient is in food. I absolutely agreed and it means the world to us that he puts her development first and foremost. It makes sense. One thing we had battled with was WHY she had her regression when she did.

She cries when we eat. She tries to sneak into the kitchen constantly and its only getting worse everyday. I hate that I can't tell her its for her own good - the meltdown she has makes me feel terrible. She's struggling and starting to know that its not 'fair' that everyone else can have stuff she doesn't.

So the plan is to keep her on her elemental diet until she is at least 3 years old.... to protect her brain and hopefully continue forward developmental progrss.

Addison failed her M-Chat screening for Autism, but that really doesn't mean much since we know that is not what she has. I'm not sure why they bother doing that on kids who are not neuro-typical.... most kids with neurological problems are going to possess some overlapping red flags with children who are autistic. It is what it is.

All in all, a visit that left my mind positive for the future in that we have a plan. Plans are good. :)


4 comments:

  1. Erin Reese's MomMay 23, 2012 at 10:30 PM

    Wow! what great news. that growth is really amazing. Glad to know that at least you now know what caused the regression. Hope things continue to go in the right direction for her!

    ReplyDelete
  2. Wow her growth and height are amazing.It is so sad that she cannot eat food as it is bad for her but great that you have found a way to keep her developing and making strides.I really hope they can figure out what is causing her not to tolerate food.
    Could you maybe give her things to do when you guys are eating.Not sure what she is into but something that she loves doing and maybe make it a reward for her.Does that make sense??!! Maybe not.
    Have you looked at the Integrative Clinic in UofM.Not sure if they could be of any help but that is something we may be looking at for BRoc is no-one else can help us.Just a thought.

    ReplyDelete
  3. Great news. I am so happy for you gyus.

    ReplyDelete
  4. Praise be to God, for things to be moving in the right direction! I know we are still waiting for solid answers but it seems that you are on the right track. Way to go and not give up. Your faith will continue to carry you and your family through and our prayers will not stop.

    Hugs and Congrats Addison on your amazing growth!!

    ReplyDelete