August EOS updates

As I have mentioned in some of my past posts related to the girls' EoE, the diagnosis was life altering for Cassidy, and for all of us.  She requires daily medication and a drastically restricted diet.  She also repeatedly heads into the O.R. for endoscopies and biopsies to monitor the progress of the disease or how well we are doing as far as keeping things under control. The chances of a sibling also having an eosiniphilic GI disorder are less than 10%, some sources say as little as 3%, but in March, Chloe was also diagnosed.  So far things with Chloe have made our experience with Cassidy seem like a stroll down easy street.  But I'll get to that shortly.

I gave a detailed update on Cassidy as far as the EoE and her chronic microscopic colitis is this post, so if you follow my blog to keep up with the girls and you missed that one, it's worth reading.  As mentioned in that post, Cassidy had a CT scan and ultrasound coming up, both were normal which ruled out any structural problems or anything like gallstones as the cause of her colitis or her severe bouts of mid and upper abdominal pain, which were happening 2-4 times a week. We also strictly removed gluten from her diet which, given the other limitations in her diet, has been no small task.  That started on July 6th and don't you know, she has not had a single episode of crippling pain since that day.  She is also less achy, has more energy and just feels generally better.  No matter how hard it is to be free of gluten in addition to eggs, milk, peanuts and a variety of fruits and veggies, it is TOTALLY WORTH IT!  The last step is to try taking her off of the Asacol, which she takes for the inflammation in her colon.  I'm hoping that gluten was the culprit of everything below the esophagus all along, but I'm not completely sure at this point.  She ended up going without her Asacol for 5 days recently, and she did have some pretty severe muscle spasms and changes in her bathroom habits.  It may have been a coincidence, we will know for sure once we officially take her off of the medication for a trial run without it.  Until then, stay tuned, because as of now things are falling into place nicely for her.






Then of course we have Chloe.  Her last update was on July 8th, and she we had gotten pretty bad results from her last scope and biopsy set in mid June.  She had started on a steroid treatment in an attempt to heal the damage in her esophagus.  On July 11th, three short days after I wrote that post, Chloe woke up complaining that she wasn't feeling well, and she was quite lethargic.  She had been dragging a little the night before, but she had begrudgingly eaten dinner as best she could (she was hungry but her throat hurt) and then gone to bed fairly easily.  I knew in the morning that she really didn't feel well, because it was the week of dance camp and she was supposed to be going home from camp with her good friend Elizabeth for a play date.  But she laid on the couch when it was time to get dressed and asked me if she could do it all another day.  So I agreed, let Elizabeth's mom know, asked my mom to come over in case I needed to take Chloe to the doctor later, got Cassidy ready for camp and loaded everyone up.  Right after we dropped Cassidy off, Chloe threw up all over the car.  I pulled into a parking lot to clean her up and realized that the vomit was bloody. So I stripped her down, moved her to Cassidy's seat and headed home to drop the other 2 kids off (thank goodness I asked my mom to come over!) and took her to the E.R. at AI DuPont children's hospital.  Lab work showed that there were no signs of ongoing internal bleeding, but she needed IV fluids and her blood sugar was very low.  Strange, since she ate dinner, had juice in the morning, and vomited undigested food from lunch the day before. They decided to keep her overnight with an IV to make sure she was well hydrated.

So began our almost week in the hospital.  That's right, it wasn't until several days later that she was finally discharged.  She complained of throat pain so severe that she wouldn't eat anything some days, or a few ounces of yogurt others.  She was so depleted from not getting enough to eat for so long, and the doctors were concerned that without the IV and unwilling to eat, she would end up back in the E.R. very quickly.  They also could not tell us why she was having such severe pain.  It's likely that she had been in such pain for a while, but her survival instinct forced her to eat just enough to scrape by.  Now that had an IV to keep her hydrated and help with her blood sugar, it just wasn't worth it.  Also, maybe the steroid treatment had caused a fungal infection in her throat.  No one knew for sure, so she kept the IV and started on an anti fungal medication in addition to the steroid, PPI and a type of coating or barrier medication called Carafate.  The purpose of that last one is to protect the tissue while the other meds have a chance to work.  A few days into the anti fungal and she still refused to swallow.  So we began to discuss placing a feeding tube.  It basically came down to this.  She won't eat or drink, so she either has to stay in the hospital with IV support or go home with another form of hydration and nutrition, which would be the NG tube.  By now the tube seemed more appealing.  In addition, there was also a sense that she needed the nutritional help anyway.  The poor kid had barely gained weight, if any at all, for over a year and a half if I'm not mistaken.  That was part of what landed us in the O.R. looking for a diagnosis in March.  So the tube was placed, I was trained on how to remove it and put it in as well as how to use her feeding pump and how to break down her feeding into calories and how much to give and when.  The next day, she got to come home.  At the time, the thought was that it would help her maintain her current weight and give her a couple of weeks of resting her throat while her meds worked.  It would hopefully act as a bridge to get us across the difficult spot we were in. That was almost 4 weeks ago, and Chloe is still taking very little by mouth.

Next week she will head back into the O.R. for yet another endoscopy with biopsies.  This time none of us know what we are hoping for or what to expect.  Something is making Chloe not want to eat, and none of us, including her doctors at this point, know what it is.  My biggest concern today is that the scope will not show much, and that we will have no answers which also means nothing to treat.  Regardless, the bottom line is that no matter what we do or do not find, until Chloe will eat enough to sustain herself in terms of both calories and nutrition, she will need the support of the feeding tube.  She does seem to have a problem with her stomach emptying very slowly, so I'm sure some additional testing will be scheduled to look into that.  As with Cassidy, anything like that which is diagnosed will be in addition to her EoE.  So at some point, which will be dependent on the condition of her esophagus, we will have to determine for sure which foods trigger the eosinophilic response.  At times it can be difficult to decide which medical condition to tackle first, so we will check
with  her doctor as far as that goes.

It has also become clear over the last month just how much she needs what she is getting through her NG tube.  In the 3 and a half weeks that she has had it, she has gained a full 5 pounds.  That's about a pound and a half a week! And she actually is visibly relieved to have the tube most days.  If she tries to eat and finds it too painful, she doesn't have to choose between feeling weak and hungry (what Chloe calls "that wobbly feeling") or forcing herself so suffer through the pain.  She does her best, then just asks for her feeding pump.  She is also needing less sleep, having fewer headaches and has plenty of energy to run, laugh and play, which is exactly what a 5 year old should be doing during summer vacation.
She will be starting kindergarten with her feeding tube, although that is just fine with her.  Rather than slowing her down, it has made her feel so much better, possibly than she has ever felt. It is very difficult to see your child with tubes coming out of them all day, and sleeping at night while connected to the feeding pump on an IV pole. It's hard to interrupt her playground games to give her medication or connect her for a feed or flush her NG tube.  Keeping a change of clothes and a bucket in the car in case she vomits her formula up while we are out running errands.  Having to double check that we have the formula, pump, backpack, Ph strips, syringe, bottled water and medications also in the car
 before we leave the house. It is heartbreaking when the tube needs to be changed; pulling it out burns and pulling the medical tape off of her delicate skin hurts.  And having her Daddy or Grammie hold her still while I feed tubing up her nose, down her throat and into her stomach while she gags and cries, then taping it to her face and pulling out the guide wire, withdrawing gastric fluid from the end to check placement of the tube, which makes an already crying child visibly more anxious because she is afraid that if it is not quite right she will have to go through the whole thing again.  It's really hard.  But she is also looking less painfully thin.  Her cheeks are pink, she has the energy to play, and maybe best of all, she is smiling a lot more.

This is the short version of Chloe's situation, and so many details have been omitted.  If you have any questions, I welcome them, even if they seem rather personal.  Please feel free to leave them in the comments!

Once school starts and we are settled into a routine, and once things slow down a bit for Chloe, I hope to get back to blogging, probably weekly, and back to recipes and tutorials as well as continuing updates on our life with 2 children with EOS.  In the mean time, thanks to everyone for your support!