Friday, February 24, 2012

Plan F

 As I'm sure many of you know...Jackson has had many tummy troubles since he was born. He is being followed by a team of doctor's for his issues and recently I had an appointment with his Gastroenterologist to discuss where we have come in the last 3 months and where we need to go.

Here is the plan now....what I like to affectionately call 
"Plan F" - mostly because i feel like we've gone through this many plans so far!

1. Number 1 and the good news from the visit is that he is very happy with where Jackson's weight is right now. He's gained a good amount since our last visit in December and is definitely headed in the right direction...yay positive!

2. And this one relates to number 1 - is that he feels the reason that Jackson has gained this weight is due to his tummy feeling better from the meds.

3. Because Jackson has gained weight since first starting the 2nd med (erythromycin) and the medicine doesn't seem to be as effective anymore he will have his dose uped so we can get control of the issue again.

4. The doctor feels that it's possible that with his weight gain and the possibility that he's grown some form of immunity to the med that he will go off of it for 5 days (starting today) and then when he starts it back up he'll start back up on his new med. This is supposed to do 2 things. 1) let his body have a break from the med to work against the immunity & 2) basically gives us a mini look at what would happen if we took him off of the med now.
Unfortunately after today being off of it his symptoms have increased quite a bit :( sad Not what I was hoping but certainly what I expected.

5. I asked the doctor the pointed question of basically how much time do we have left that we can give him to see if he'll grow out of these issues. He said that we'll give him till he's 2.5 (6 more months) and if he has to continually have the dosage increased with weight gain and he isn't showing any signs of improvement than he has a doctor doesn't feel morally right to just continue refilling his prescriptions which are essentially just masking a problem that is very visibly there. At that point the next step and new plan would be to perform an Endoscopy to see what truly is going on. Obviously this is our last course of action so we are praying pretty hard that he snaps out of this in the next 6 months. He said that when looking at Jackson's Upper GI test we did earlier last year that the way Jackson is "made" is correct but it is his plumbing that's an issue.
I feel good knowing that I have a time frame now.

6. So Jackson now have 3 diagnosis:
    1. Extreme GERD
    2. Sandifers Syndrome
    3. Delayed Gastric Emptying Syndrome

After Jesse & I talking last night I think we both feel that if we get to 2.5 and he hasn't shown signs of improvement then the Endoscopy seems like it is our best next course of action. 2.5 years is an awful long time for a little guy and us to deal with all of this and if he isn't showing us that he's getting better than I want to do whatever is in his best interest to help him feel better. 

Only time will tell....

Besides working on his new medicine regimen I will start taking Jackson to Feeding Therapy and Speech Therapy sometime after we get back from our Oregon visit in March. Jackson had a Feeding Evaluation a week and a half ago where they discovered that he has created many habits in his eating that stem from the pain and discomfort he has always had from his 3 diagnosis. 

  While all of this is extremely overwhelming and worrisome most of the time I know that we are very blessed to have a happy (most of the time), intelligent, beautiful and funny little boy. I know that we will figure this all out at some point and until then I need to be a strong advocate for Jackson and help him in every and any way I possibly can to diminish his pain.

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