Monday, June 22, 2009

Angry...

There were several things that happened today that made me angry:(1) The fact that my dogs' vet of 4 yrs (FOUR YEARS!!!) cares more about making a daily deposit than seeing and treating my dogs infected neck. We found a new vet today. (2) The fact that I am STILL fighting with the crappy state of MS to get Jayden back in Early Intervention. A complaint was filed today with the Dept of Health b/c EI is not returning calls. (3) The fact that we were given an hour notice for a realtor to show our house this evening at 4:15 and I ran around like a chicken with it's head cut off to mop the floor and make sure everything was PERFECT for a showing, then grabbed my napping child from his bed and my 2 dogs (1 with a cone head for now!) and my loud mouth bird and drove them around in 100 DEGREE weather for an hour, only to call the agency at 5:30 and find out that the showing was cancelled. (4) It was 100 degrees today.

But there was one thing that stood out today. I was surprised that it made me so angry. We got his blood test results back today from the celiac panel. Positive. I know, DUH, right?? Well yeah, in a way. One thing I have to admit is that I do know that children with PDD often have GI issues and have an intolerance to wheat. So the fact that his pictures from the scope showed damage left me wondering if it was truly CD, or just the "gut" issue common in ASD. Either way, it would be a lifelong dietary change for Jayden, but subconciously, I guess I didn't completely accept the diagnosis last week. Well the blood test confirmed it today. And he was born with celiac disease. That's what makes me angry!! He's had GI issues since birth and I've been bringing him to see the GI dr since he was 5 months old. The GI docs at UMC made me feel like I was just a paranoid, first time mom. "Oh, he's just a happy spitter." "All babies go through this, he will outgrow it." "It's probably HIS normal to only have a BM 1-2 times a week." "He doesn't look like he's in pain." And once the rude Dr told Jayden "Okay buddy, I have to go tend to the TRULY sick kids!" So b/c he didn't believe that my baby was truly sick enough, he ignored what I was saying and did not do even the basic tests to rule out my suspicions. So I followed his WRONG advice for 2 yrs, further tearing up my baby's stomach. When Jayden stopped eating... "Oh all toddlers go through the picky eating stage." But I stressed that it was more than picky eating. Again, pushed aside as a paranoid, first time mom. There was a period of time where Jayden wouldn't eat anything other than bread. It was like he craved bread ALL.THE.TIME. Yeah, that screamed celiac.

"Studies have found that opiates found in gluten and casein are released when they are improperly digested. When the GI tract is not in good condition, such as from celiac disease, these opiates get released into the bloodstream. The opiates not only impair brain function but also cause craving for foods containing gluten and casein, which increase the problem."~taken from www.celiaccentral.org

Even to this day, he does not want GF bread, but he will literally climb the table and go into rage to get to regular bread. Even after the ridiculous Drs did the scope, they still couldn't tell that my child had celiac disease!! Even after I told them I suspected it several times!! I JUST DON'T GET IT! Sometimes Drs have to put the book aside and listen to the parents. Parents are with their children 24/7. Drs only see these kids a few times a month (or year) and only a few minutes at a time. It only makes sense that the parents are your best source for information, SO LISTEN TO THEM! I am so angry that I want to write a letter to the so called Drs at UMC who denied my baby the testing and procedures needed to properly diagnose him sooner. I want them to know that by ignoring my concerns they left my child undiagnosed for over 2 yrs and it is b/c of them that he has been suffering for so long. That we have been suffering for so long. It makes my blood boil. But what hurts the most is that there is research that proves that children with untreated celiac disease usually end up with a diagnosis of autism. Wow. Now I won't know if that is the case, unless Jayden's genetic testing for autism come back positive. Then I know that he was possibly born with autism. But for now I'm just so angry. I cannot wait to get out of this AWFUL state. And since the real estate agency we are currently listed through is making that hard, then we will be looking for a new agency this week as well!! UGH. I just keep reminding myself that God chose me to handle this situation for a reason, and I'm going to get through this. I know I will.

2 comments:

Jess said...

I say write the letter. What do you have to lose? And maybe they'll listen to someone better next time....

Sorry!

Tracy said...

Nia,

First of all I am so sorry you are dealing with this. I truely feel for you and want so much for you and J to get out of MS and get the deserved help he needs. I am praying for you and him and if you need any help I am here.

Tracy