Mommy to a tuber needing SUPPORT!!

[danamsears]

Hello to all!
I am a Mom to three very busy needy boys! LOL
I have Joshua he just turned four and has asthma. I have Carter who is 3 months old and has severe Reflux. Carter without meds has Sandifer's Syndrome and Constant hyper extension. Carter is on 3.25mg per kilo of Compounded Losac. My most difficult son is Mason, he is 20 months old.
Mason has the following symptoms:

• Severe GERD from birth
• FTT
• Major feeding difficulties,
• Dysphagia with Aspiration
• Aspiration with thin liquids
• Penetration with any mixed textures.
• Chewer, chipmunk & spitter
• Speech delays
• Suspected Sensory disorder
• Left side slowness, left leg just buckles under him.
• Vomiting once a day
• NEVER SLEEPS
• G-tube fed since 02/15/2009 Currently on Peptamin Jr. but trying to switch to pediasure. plus with fibre
• Suspected Chronic pain from unknown source. (Doc is taking this seriously)
• Behaviour issues, very aggressive

Mason's is on 3.5mg per kilo of compounded Losac and has been on motility agents. Mason has a crappy immune system and always gets sick. I am fustrated with the doctors not "getting him" I wish their was a diagnose for him or that the docs knew what to do with him.

After Mason got his g-tube he shot up to the 10th percentile, he has recently dropped to under the 3rd percentile. I am so fustrated with the Reflux and vomiting, I have had enough of the tube and I wish they could just figure what could help him.

Mason just looks and is developmentally pretty normal but has these weird problems that no one wants to take seriously until he looses weight and they just want to tube him, they are now talking about a GJ-tube. I have problems with the docs just passing the buck back and forth. I am tired!!!

I am glad to have found this site and have laughed and cried several times in the last few days reading the threads. I am excited to have someone who knows what I have been going through alone for the last 20 months!

Thanks for reading my post