Diary Entry #7 - 01/06/2010 - Bailey Chair and ME Yahoo Group

 Since my post yesterday a lot has changed. Dr. Vernau, from UC Davis, sent me a link to a Yahoo Group dedicated to ME. Click the following link to go there:

Megaesphagus Yahoo Group

Based on a single post that I left I received dozens of responses from people who are very experienced in the SUCCESSFUL treatment of ME with and without MG. Here is the post that I left on the group this morning:

First of all thank you everybody for your very thoughtful responses and support. They were much needed and have served to re-energize myself and my two kids.

Secondly, I wanted to lay out the tx plan that I am executing for her:

Medications:

30 mg Pyridostigmine in morning and then another 30mg close to 12 hours later. That is all the meds she is on now.  I took her off the thyroid medication (2mg twice daily). We only started that prior to getting back the MG test results. I also keep handy the Zeniquin 50mg tablets. She is not on those. They are for quick, aggressive treatment of ap. She did have a bout of that just prior to being diagnosed that almost killed her.

Feeding:

I feed her 5 times a day the Royal Canin Digestive Lowfat LF. I try to get her 14 oz (1 can) per day. That is the usual amount. She ALWAYS has an appetite and would eat much more if I allowed her to. I take the food and roll it into small, smooth meatballs and feed them to her about 10-15 seconds apart. The first and last feeding of the day she gets the Pyridostigmine. I put it in the very first meatball she gets hoping that the first meatball has the best chance to get to her stomach. She has not had a treat or table scrap since the beginning of November.

Visit the following link to see how she is fed and then elevated. However, based on advice I received from this fine group of people I have altered the elevated feeding which I will describe next and change on the website:

Click For How She was being Fed

Based on a number of comments (actually many comments) my kids and I measured out Sammie, went to home depot and built a Bailey chair last night (we call it the Bailey box). We padded it with towels (we are going to "pimp" it out tonight) and have given her the last two meals (last night and this morning) in the chair. She was not happy at first, but she quickly got used to it and now understands the chair means food! I have added water to her feeding after the food now. I have left her in the chair, vertical for about an hour. I used a modified hamster water bottle that I bought at petco. It has a long tube that she can get water from. This assures she is vertical and her head is elevated when she drinks. Take a look:

I am encouraged, but nothing is easy. She vomited (not regurgitated), twice last night (large amounts). She repeated the process twice this morning. She knows it is coming. In fact, almost unbelievably, her last vomit she went into the kids bathroom and did it in the bathtub. This is not a place she hangs out. I am pretty sure she has never been there. When she vomits she makes a very loud seal (arrrr!) like noise. The vomit is comprised of about half thick foamy liquid and half dog food. I believe it may be coming from her stomach. If not then her esophagus must be very small or clogged.

At night we set up our laundry room with her bed and other pillows and towels. She is happy to go in there and when she naps during the day she goes in there.

She has zero activity. She is not interested in doing anything but laying around.

Her eyes are very glossy and they water constantly.

We have noticed minor weakness of the rear legs. We try to carry her down all stairs.

Questions:

What am I missing?

Is there a recipe out there for a better food treatment?

Is there a medication that might open a swollen or very sore esophagus?

My temptation is to check her back into the clinic and allow them to treat her. Get a chest x-ray to be sure her lungs are clear. This is very expensive and I would like to avoid it. The total bill thus far for Sammie is around $6,000.

I have always preached to my kids that we do not quit. Once you make a commitment in life you see it through to the end. I am preaching that now so I am able to use this as a valuable teaching tool.

Make no mistake, we are committed to seeing this through. The big question I had was whether dogs with ME/MG have ever made it to remission. I got a resounding yes response from many of the fine people in this group. Thank you again!