Thursday, October 6, 2011

A new challenge

 Since being diagnosed with Sandifers Syndrome in March of this year we have put Jackson on several medications before we found one that reduced his "episodes" enough that he could be comfortable.

(For those that don't know what sandifers syndrome is: basically Jackson's body has "shuddering spells" in a reaction to acid reflux).

Within the past few weeks his episodes have been more frequent and other concerning symptoms have been popping up as well (i.e. a boat load of gas and burping). We went for a visit with his new GI doctor here in Colorado and we LOVE him which is fantastic since we weren't such a big fan of our last GI doc or pediatrician. He agreed that Jackson's reflux was not under control at all and our next step should be to increase his medication dosage. Now he informed us that 95% of children have either shown much improvement or have been rid of acid reflux by the time they're 18 months so we are kind of in limbo right now with the fact that Jackson could start to show improvement signs now or he may end up being that 5% that it either takes longer to go away or he struggles with it for who knows how long. If this next dosage amount doesn't improve things then we can go up one more dosage (which is the maximum dosage he can be on) and then we will have to discuss a possible endoscopy procedure (really not something we want to put him through or go through ourselves).

Ok so now that the back story has been told :)

We began Jackson's new dosage this past Friday and I also started a food and symptom diary thinking that maybe, just maybe, there is some food that we give him that is setting him off. Really I was just trying to find anything that would allow me to get my baby off this medication! After 2 days i started to notice a slight pattern with consuming dairy (specifically milk) and his symptoms.

So here we are....we have decided to have Jackson be completely dairy-free for 3 weeks to clear his system of all dairy.

I apparently had NO CLUE just how many things have dairy in them...pretty much everything! For now shopping trips are much more difficult and time consuming as I have to read the labels of EVERYTHING i might give him and 8 times out of 10 I have to put it back because it has some form of dairy in it. BUT we have found a few good items to get us going and so far we have seen  a lot of improvement in Jackson's attitude and symptoms. Now don't get me wrong, some days aren't as good (for example yesterday he had about 12 episodes) but today he had 2 so hopefully we're headed in the right direction! He has also gone from refusing every meal to eating everything on his plate AND asking for more!!! YAY! We have struggled in the past with getting Jackson to gain weight so the fact that he was barely eating anything was freaking me out. He seems so much happier now and not nearly in as much pain.

While having Jackson needing to be dairy-free will certainly pose a challenge for me as a mom and a chef for the family :) I have no problems doing it if it was provide Jackson with a pain free childhood.

Here's to a new challenge with hopefully a very big reward!

1 comment:

  1. Hmm... it's always interesting to see how a child's behavior and health changes when we tweak their diet. I hope Jackson's symptoms reside with time. It has to be encouraging to see him improve already... what a sweetheart. We'll keep him in our thoughts. And you too! As you are challenged with a new way of shopping and feeding your little guy.