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!

Best Part of Summer...Jam!

I thought this blog needed a sunnier, brighter, yummier post after the last couple.  Now I know that those of you following me to keep up with the girls (or eosinophilic disease in general) are probably waiting for an update on Chloe's recent hospitalization, but it's time to throw my recipe followers a bone!  It all ties in anyway.  On days when everyone was feeling well several weeks back, we went cherry picking at local orchards, which I mentioned at the end of this post.  We picked buckets full of red and yellow sweet cherries.  Some we ate fresh, some became beautiful sweet cherry pies, some were transformed into bubbly warm cherry crisp.  And some, perhaps my favorites, were put up as jar after jar of cherry jam.  We made small 4 ounce jars as thank you gifts for Cassidy's teachers and other special school staff.  We made basic cherry jam, some of which we shared with friends.  Then, in an effort to use up some other fruit before it was past it's prime, I whipped up a batch of spiced cherry grapefruit jam.  And it is nothing short of amazing.



I thought it would be nice to share my cherry jam recipes with you today.  For those of you new to canning, I'll go through the process that I use step by step.  The purpose of processing jam in a boiling water bath canner is to make it shelf stable, meaning that you can store it safely in the pantry rather than the refrigerator for at least a year.  If you would rather just keep your jam in the fridge, skip the processing step, and once the jam is ready, just fill the jars with it and pop them in the refrigerator where they will keep for at least 3 months (if it lasts that long!)

If you do decide to process the jam and the whole thing is brand new to you, you do not need to invest in tons of fancy equipment.  You can process the jars in any stock pot (with a lid) large enough to cover the jars with at least one inch of boiling water.  A large stock pot is generally large enough to accommodate standard jelly jars.  You will need something to keep the jars from resting directly on the bottom of the pot.  You can simply fold up a dishtowel and place it in the bottom.  Finally, you will need a way to get the hot jars out when they are finished processing.  So to recap, stock pot, dishtowel, tongs, canning jars.  You probably have everything except the jars, which you can buy in cases of 12 for around $12 at big box stores, kitchen supply stores and many grocery store, especially during the spring and summer.

Accessory Set

Canner with jar rack

If you decide you want to go ahead and jump in to canning, spend a little cash and just buy a canning starter kit.  You can buy the canner with jar rack and accessory set (everything you need except the jars) for about $40.  There are also a variety of options out there in a variety of price ranges, such as the accessory set only (this includes a jar lifter, a lid lifter, wide mouth funnel and a few other things, and is very helpful) for around $10-$15, and I believe the Ball company makes a home canning "Discovery Kit" made to use with a stock pot, which includes a silicone lift out jar rack.  So there are a variety of options in a variety of price ranges depending on your comfort level and what you are willing to spend.  I can a great deal, so I have a big canner and an accessory set.  But the equipment that I have, while good quality, is basic and without bells and whistles so to speak.  I prefer it that way, and it works just fine.


 First, my disclaimer: I have attempted to share safe preserving methods. However, I make no promises. You alone are responsible for your health. Be aware of current safety recommendations. There is a wealth of information from licensed sources about current canning standards available for free on the internet. This is the way that I can for myself and my family. You alone are responsible for your health!

Let's get started!

 1. Wash the jars and lids.  I put my jars in the canner while the water is heating to boil, to make sure they are sterile.  The lids are made up of a ring and a flat lid piece.  Set the rings aside and put the flat lids in a small sauce pan with water.  These you need to warm to just below a simmer, over really low heat.  Do not boil them!  This primes the sealing compound around the edges.






2. Fill the canner or stock pot with enough water to cover the tops of the jars by 1 inch once they are full, and put it on the stove to boil.  This is when I stick my clean, empty jars in, but if you have washed the jars, I feel that this step is probably optional for jam.


 Now for the jam! Because Cassidy is allergic to apples and most commercial pectin is from apple peels, this is a pectin free jam recipe.

You will need:

Sweet Cherry Jam

5 cups of washed, pitted sweet cherries
3 cups of sugar
2 lemons

1. Cut the cherries in half or quarters or both, whatever you prefer.  Toss them into a non-aluminum pot with the juice and zest of the lemons.

2. Cook over medium low heat stirring frequently until they simmer and soften. Put a small plate in the freezer, you will use this to test for jelling shortly.

3. Turn up the heat to medium high and add 3 cups of sugar; stir until evenly mixed.  Keep stirring frequently so that it doesn't burn on the bottom.  Keep this up until the jam starts to thicken.




4. Once it looks like the jam is thickening up and starting to gel, you can do a plate test.  Grab that frozen plate from the freezer and spoon a little jam onto it.  Stick it back in the freezer for a few minutes.  Make sure you keep stirring the jam while you wait, since it is cooking quickly and at a higher temperature at this point.  You don't want to burn it!

5. When you take the plate out again, push your finger slowly through the cooling puddle of jam.  If it wrinkles up across the surface when your finger pushes into it, turn off the burner!  It's ready to go into the jars.  If not, continue to cook and stir for a little longer, then test again.  Be careful not to leave it unattended, or it can overcook quickly.  If that happens it won't taste as good.

 ***If you are making refrigerator jam, you can just fill jars with the hot jam, put lids on them and pop them in the fridge, where they will stay good for 3 months, probably even longer if they last that long!  If you want the jam to be shelf stable, go on to the next step.***



6. When the jam is ready, ladle it into the hot, empty jars (remove them from the boiling water and empty the jars, but leave the water in the pot, on the stove and boiling for processing!).  Fill them to 1/4 inch from the top. The wide mouth funnel comes in handy here if you have it!

7. With a clean, damp cloth, carefully wipe the rim of the filled jars so there is no jam or residue on them. 

8. Adjust the 2 piece canning lids, which have been prepping in hot water.












9. Put the jars on the canning rack and slowly lower them into the water. The water should cover the lids by an inch or two. Put the lid on the pot.

10.Once the water has come to a full boil again, set a timer and process the jars for 10 minutes.

11. After 10 minutes, turn off the burner and carefully lift the jar rack up.  Transfer the jars to a spot where they won't be disturbed, I put them on a towel along the back of the kitchen counter.  Let them cool completely, which may take overnight.

It's a good idea to label the jars with the date and contents.  You can use cute labels, or just write on the top of the lid with sharpie.  The lids are not reusable for canning anyway.

For more information on safety in food preservation, please go to The National Center for Home Food Preservation.


For Spiced Cherry Grapefruit jam, omit the lemon, but add the juice and pulp of 2 grapefruit, and the zest from just one of the grapefruit.  Also stir in 2 teaspoons of cinnamon while the jam is simmering.  The rest of the process is the same.

You could probably substitute most fruits for the cherries in this recipe.  Higher pectin fruits, like blueberries, will result in a thicker jam than low pectin fruits like strawberries.