Thursday, April 16, 2009

Life Never Stops

Things have been insanely busy around here and I've been horrible at keeping up this blog. Zoe was out of school on spring break and we had her birthday during that time and my birthday and appointments for little man. Before that it was appointments and therapy - no me time to write.

Life Never Stops.......
Since my last update we have taken Zachary to a new Neurologist and a new Geneticist. This means we have now seen 2 of each from 2 totally different facilities for more information. TOO bad there is no real new information to post. It is the same old same old........."YES something is wrong, but what it is we don't know" The same old frustrating news --- a diagnosis would be easier to handle at this point.

The new Neurologist: Believes Zach had seizures that were brought on by the food we were putting into his g-tube for food trials. She believes they caused pain which caused him to hold his breath which caused the seizures. He has been seizure free since we stopped the food! She said he has many neurological issues but that at this point in time nothing can really be done beside monitoring him.

The new Geneticist: We spent a ton of time with this man. He is brilliant but not brilliant enough to know what is wrong with Zach. He said without a doubt something is going on genetically with him. He ruled out RSS because Zachary is now on the charts for height - we questioned this and he said that although a g-tube is one treatment for RSS a child would not go from not being on the charts to on them so high is 5 months. Zach is at the 10% -- he has not been on the chart since he was born (this is good news). He said that Zach is so close to being normal but so close to being totally genetically wrong. If he regresses we need to go in and see him ASAP. He didn't suggest any further testing (as Zach has had many tests done and they are very costly) It seemed as if he would come up with a syndrome and then shrug it off because something else with Zach didn't fit the profile. If we think of something it may be we are to come in and get his opinion. If not we wait a year and go back in.

On top of those appointments we've also been to see the Allergist and the GI (well his ARNP)

Allergist: Zach had a skin prick test done and it showed he is still VERY allergic to milk. For the first time it showed a slight positive to egg. Everything else came back negative. He is worried that Zachary may have an eosiniphilic disorder. http://www.apfed.org/ With this type of issue allergies are very delayed so on the 27th we will take Zach back in and they will do a prick to prick patch test. When they do this test the prick the food then prick Zach's back - they make a paste of the food to place on top and then patch it up. We go back 72 hours after that to have the results read. The doctor told me it won't be a pleasant week...but it will hopefully give us more answers.

Yesterday was spent at the GI's office visiting with his ARNP. Here is what I got out of her.....YES it could be a very rare eosinphilic disorder of either the intestine or stomach OR another form of an extremely rare food allergy. YES his formula is looking to be a life long answer to keeping him healthy. YES his tube will more then likely be in for 5+ years (she claims it isn't his tube but the formula which is helping him) - at which point we will try to get him to take the formula by mouth OR the tube may end up being life long. YES the doctor also feels all Sherri is telling me is true. I asked about more biopsies - and she said June 1st when I get in with the doc this will be discussed and figured out. She didn't want to schedule any without more talk with the GI. YES she 100% believes the seizures have to do with the food going directly into the tube and in the past they more then likely were happening from eating orally.


For the first time in Zach's life he is becoming more and more healthy. He is on the charts for both height and weight. He is doing AMAZING! He is talking more, he is playing more, he just all around has energy where he NEVER did before. For the first time I think I can say my son is acting more like a 2 year old where before his tube he seemed more like a young 1 year old or younger at times. He is still very delayed, he still struggles with dyspraxia, and major SPD, he is still small (but closer to normal) BUT he is better.

1 comment:

Annette said...

Oh, Sophie, no wonder you haven't posted! You haven't had much time to yourself.

Though you don't have the answers you'd like, it's a beginning.

Praying for you and you big boy!