Diary Entry #11 - 01/11/2010 - What went wrong?

After having several days to consider what went wrong I now understand. This was all human error. My error for the most part. Here is what I learned. If you are fighting this disease, learn from my mistake:

• I killed her when I reduced her Pyridostigmine. I was so hung up on the vomiting that I underestimated the MG. Which given the chance, came back at her with a vengeance. The mega esophagus user group suggested that she might be OD'ing. They never said reduce her meds on your own. I never should have done this.
• When she stopped swallowing her food whole that was a sign that her jaw, throat and head muscles were too weak to gulp down her food. I was blinded by no vomiting the night before and did not see the first sign of MG attacking.
• When I got to the clinic Thursday morning, she had come back. That was because the 15mg of Pyridostigmine was taking affect. I did not notice this. I should have noticed that is was not enough.
  
• I should have stayed for the X-ray and taken her home. We had become the experts at feeding her. I am positive when they fed her at the clinic she aspirated the food into her lungs.
• When I picked her up the next day the MG was attacking, full force. I am not sure how the clinic did not see these signs earlier. Again, had I taken her home the day before we would have recognized these signs and been able to medicate her before it was too late.
• When we got her home, finally realizing the mistake of reducing the dosage of the Pyridostigmine, we desperately tried to get her some medication. By then is was too late. She was too weak to fight another bout of pneumonia and the MG was attacking every muscle in her body.
  

I cannot make this more clear. NEVER REDUCE THE MG MEDICATION DOSAGE WITHOUT YOUR DVM TELLING YOU TO. I took the advice of somebody who said they were guessing. I was blinded by Sammie's adverse reaction to the meds. She became nauseated when getting the meds. This means she probably did not get all the meds that is why the large dosage was necessary. I should have treated this with anti-nausea medication which was also suggested. Instead I did the worst thing that I could have, and it cost Sammie her life.

I pray to God that somebody reads this and avoids making this mistake.

We were so close and we miss her so much. Hard to live with myself right now.

Diary Entry #10 - 01/08/2010 - Sammie Crashes

We picked Sammie up from the clinic and she was drooling from her mouth and eyes. She also smells like urine. The tech that brought her out did not know how to hold a dog and her legs were dangling. My 12 year old son basically grabbed her immediately. She is not responsive to anything. Also she has a deep lung cough which scares the heck out of us. When we got her home she would not eat for the first time ever. I fear that the reduction in the Pyridostigmine may have been a dramatic mistake. Desperate to get her medication I crushed up 20mg and put it in water and used a turkey baster to get it in mouth. We then elevated her for 20 minutues. The drooling stopped but she is still breathing very hard with a deep cough. She walked out of her bed and urinated on her self which she did in bed several times. I called the 24 hour clinic and brought her in. The Physician is sure that she has aspirated over the last 24 hour and now has pneumonia. On top of that she is down to 17 pounds and very sick. Unfortunately, the only thing left to do was have her put to sleep. We were all there when she died. My 8 year old daughter took this particularly hard. For the past 3 days, after feeding she would read doggie books to Sammie in her Bailey chair. Our family is devastated. We fought for 3 months and when things started looking as if remission could be close, we lost her. This disease is the worst.

Diary Entry #9 - 01/07/2010 - Sammie weak but did not vomit last night

Sammie is weak this morning so I am going to take her into see Dr. Crumley. She did not vomit at all last night so that is encouraging. I did give her a small feeding last night. I also gave her a small feeding with 15mg of the Pyridostigmine. When I let her out of her Bailey chair, she just layed with her butt still in the chair. Also when I was feeding her, for the first time she started chewing the meatballs. Not sure why. Almost like she could not swallow easily so felt she had to chew her food. This could be a big risk, as she was swallowing the meatballs whole up until now.

She seemed to be regaining strengthen on the way to the clinic. The good news is that we took a chest x-ray and her lungs are totally clear. Her esophagus has also shrunk somewhat and looks much better. She did vomit for Dr. Crumley and he agrees that this is from the stomach. He is giving her a shot of anti-nausea medication.

Diary Entry #8 - 01/06/2010 (Evening)- Sammie Vomiting and not doing well

Sammie has been vomiting between 8-12 times a day. This is not a regurgitation, but vomit from the stomach. It has been suggested to me that perhaps she is getting an Overdose of the Pyrodostigmine. This could be causing her illness. I am going to go from 60mg to 30mg. I also got another post about a dog that is on 30mg that is twice Sammie's size. So I am going to do this and hope it helps.

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!

Diary Entry #6 - 01/05/2010 - MG/Megaesophagus Hitting Hard

Sammie's condition has gradually deteriorated. On Sunday she vomitted 9 times. She cannot seem to hold any food down and as a result has lost even more weight. I had her in to Dr. Crumely yesterday, we are pretty sure she does not have pneumonia. We have restricted her exercise to zero.

When I think of the studies that had a 90% remission rate within an average of 6 months, I wonder if those dogs had megaesophagus? I am 90% sure the answer is that none of those dogs did. I work at home and am able to spend the amount of time necessary with Sammie, feeding, burping and elevating. How did 55 dogs survive an average of 6 months when I spend so much time nursing Sammie and appear to be losing her rapidly?

Kids are really down as am I. Unfortunately we are starting to accept the inevitable. My question to myself is, What kind of life is this for Sammie? If anybody wants to chime in on this one, feel free.

My plan moving forward is to find out from Dr. Shelton (UCSD) and Dr. Vernau (UCD) if dogs with MG/megaesophagus have any chance for survival and remission. If they do go into remission, does their esophagus start working again?

Diary Entry #5 - 12/30/2009

The first 4 diary entries will get on the site in the next few days. They mostly have to do with the diagnosis and the subsequent battle with pneumonia ...

We are going up the mountain this morning so we had to feed Sammie early. I gave her about 1/3 of a can of dog food with here 30mg of Pyridostigmine Bromide. . After burping and elevation we let her out. She is doing great.

She had very little regurgitation last night and is showing zero signs of pneumonia. I have cut her Zeniquin Dosage to 25mg at night.

We have made the laundry room her room. She was sleeping with my 12 year old son each night. However, she seems to sleep better in isolation. In the morning we wake her and she is very happy with tail wagging a million miles per hour. We put her bed and an old comforter in there. She sleeps in an elevated position because she is so damn smart.

Noon feeding went well. I gave her water after the feeding. About 2 hours later she regurgitated a fair amount. It was mostly clear which means the food got to the stomach.