Peaks and Valleys

Peaks and valleys.  Ups and downs. For most of us, for better or worse, life has a series of peaks and valleys. A rhythm of struggles and triumphs that we learn to cope with or embrace. Moments that we learn to accept and others that we rejoice in and celebrate. It has been 4 months since my last post, and at that point I gave a basic recap of Chloe's situation from her diagnosis with EoE through some serious valleys and back to what seemed like a return to a little bit of a peak.  I haven't sat down to continue the updates since then not because I haven't had news or projects or recipes to offer, but because as much as I have needed to write I haven't been able to squeeze a single spare second of time out to do so.  I have 3 drafts started with patterns and tutorials and 2 with new recipes, but looming larger than any of those is Chloe.  She is getting really sick. Again.  And this time I really have no idea what we will find.

I know that many EOS kids have a tougher time fighting off routine illness and can require a little extra time to bounce back.  And Chloe has had her share of that recently.  But she has also had another extended episode of being generally unwell.  This is at least the 3rd significant episode of this kind that we have seen with her, and each seems to be worse than the last.  She was ill this way shortly before her hospitalization this summer, and it is likely a large part of what landed her in the hospital that time. People develop fungal infections all the time.  They don't spend a week hospitalized and 2 months on a feeding tube as a result.  It stands to reason that for her, that infection was the straw that broke the camel's back.  She crashed so hard because she was so depleted before the infection started.  We thought at the time that this was due to the struggle to control the eosinophilic disease, and that prior episodes of the same malaise were due to the same thing, which had not yet been diagnosed when we first saw her this way.  This time around she is worse off than before and while she has had a small EoE setback, it cannot explain whatever is going on right now.

As of Thanksgiving, Chloe was still having pain with swallowing and she was starting to get generally cranky again.  She had another set of biopsies done and an overnight test for reflux.  The biopsies were clear which was good since she has been on an altered diet as well as the steroid.  The reflux test, called an impedance probe, showed us clearly that she needs an adult dose of PPIs.  So we made that change to her medication and took her off of the erythromycin (for the gastric delay) and antihistamine (also an appetite stimulant if you recall) since she is maintaining her weight, and one was causing tummy aches which she doesn't need any help with while the other wasn't really effecting her appetite.  Fast forward a few weeks to January 1st, and she reported that she could swallow without pain!  She was starting to look pale and her temper wasn't the best, but finally no throat, chest and stomach pain!  3 weeks later, we stopped the steroid to see if the diet changes were enough.  They weren't. The throat and chest pain returned, so she is back on the steroid again for now. This I can live with.  She also managed to have a the flu not once but twice AND strep throat twice, all in the last couple of months.  This I can also live with. However, through all of these ups and down in November, December, January and February she has remained generally short tempered and very fatigued.  Her headaches, both migraine and regular, have gradually increased to the point of being a daily problem. On good days, Chloe can stay awake until 5pm before she crashes for the night.  On bad days, she takes as many as 3 naps and goes to bed at 6:30.  Some days she gets up and plays, even runs around in the yard for a little while, and other days she never gets off the couch except to use the bathroom.  The most recent symptom is a gradual development of and increase in joint pain.  First her legs hurt.  She came down with the flu which of course can make you achy, however she could barely walk some days and was asking to be carried to the bathroom.  Perhaps the flu achiness combined with her other joint pain was too much together.  Then the flu was gone and she still complained of pain in her knees and hips.  Now she also has pain in her elbows and one shoulder.  When the doctor asked how she was feeling she just said "Everything hurts."  Usually she gets around fine, but if extended walking is necessary, across a parking lot for example, she can't make it without being carried part of the way.  Every now and then she has a day when she seems a little clumsy because her knees are so sore. Those days are usually the ones that also require multiple naps. In addition she has been running a low grade temp, right around 100, off and on the entire 4 months, specifically at times when she had no other reason to be febrile.

Since all of this has been consistent before, during and after all of her routine viral illnesses, and since we can recognize it as something that we have seen before, we took a trip to the pediatricians office.  Chloe cooperated by falling asleep in the exam room and looking excessively pale, as well as having a low grade fever and reporting the body and joint pain.  He agreed that it is all cause for concern and got started by ordering blood work.  Now the results are rolling in and I am hoping to hear from him today as far as what he thinks it all means, and if he has a simple explanation for it or if he needs more testing done or to refer her to a specialist of some kind.

Until then, we will all be keeping our fingers crossed that it is nothing too serious, and I will be working on ironing the kinks out of those tutorials, patterns and recipes.  Family, friends, members of the EOS community and other readers alike, I always welcome your questions and comments!

Feeding Chloe

 School starting as well as ballet, jazz and karate have really kept us busy around here!  A few things have changed for now with Chloe, so I wanted to write a post for my followers that are family, friends or EOS/food allergy readers.  To briefly recap, Chloe was diagnosed with eosinophilic esophagitis (also called EE or EoE) in late March 2012.  She was started on medication, a proton pump inhibitor (or PPI, such as prevacid) and had repeat biopsies done 6 weeks later on June 13th 2012.  At that point she had gotten much worse, with her eosinophil cell counts doubling and her esophagus covered in abscesses. She was barely eating any solid food at that point and was in significant pain.  Between the first and second scopes, we had allergy testing done (scratch, blood and patch testing) and have a list of possible triggers that would need to be tested, but first we had to get the damage in her throat under control.

Once the second set of biopsies came back looking so bad, she was started on a regiment of swallowed steroids to help control the inflammation. About 2 weeks after she started that medication, on July 11th 2012, she vomited blood and I took her to the E.R.  She only vomited once, and her hemoglobin was normal, but she was quite fragile and was admitted for overnight IV fluids.  It was almost a week before she came home.  The steroid, which she is still on, had caused a fungal infection on top of everything else and she could not eat at all.  At the point of her hospital discharge, she needed an NG tube for nutrition and calories because she was still unable to eat enough.  Following a round of anti-fungal meds, she was only marginally better and only eating only small amounts of yogurt and watered down apple juice so she had a third endoscopy with biopsies on August 15th 2012.  That set of lab results showed that while her eosinophil counts were way down, she still had a fungal infection.  The original infection was so severe that the first round of meds did not get rid of it, so she started on a 3 week course of stronger medication.  By that point, she was taking the anti fungal, a barrier medication to protect her esophagus, the PPI and the steroid, and eating more but still not enough to remove her feeding tube.  In addition school started, so we were glad that she was eating enough to at least skip her lunch bolus so she didn't have to be hooked up to her feeding pump for an hour at school.

One of the things that had come up before and seemed to be an issue again was that when Chloe eats, or has a tube feed in recent cases, that food stays in her stomach for hours, much longer than it should.  This is called gastroparesis, or delayed gastric emptying.  We have not yet had a scan to formally diagnose this condition, but I can say for certain that she will sometimes vomit undigested food 6 to 12 hours, or more, after eating it, and even the liquid diet pumped through her feeding tube will remain in her stomach for several hours which is easy to determine when doing pH checks before starting a new feed.  Gastroparesis can cause stomach pain, vomiting and a constant feeling of fullness which decreases appetite and ability to eat.  These are all symptoms that Chloe has struggled with pretty much her entire life and are in addition to the EoE.  Because of this, she has also started taking a mini dose of erythromycin.  Erythromycin is an antibiotic, however it has the side effect in some people of increasing gastric motility.  Because of this, it is sometimes used to treat gastroparesis.  She has also started taking a prescription antihistamine, and this medication is also being used in Chloe's case for the side effect, not for the antihistamine properties, but because it sometimes acts as an appetite stimulant.

On September 14th, which happened to be our 9th wedding anniversary, we removed Chloe's feeding tube.  About a week later, we stopped the barrier medication, Carafate, since the tube is no longer in and because it can also interfere with the absorption of some other meds, including her PPI and steroid.  At this point in time, Chloe takes the PPI, the steroid, the erythromycin and the antihistamine daily.  She does seem to be eating more, and since the tube came out she has lost just under 3 pounds and is holding steady at 38.2 pounds, which we are happy with.  So the good news is that she is maintaining her weight and while she does still have stomach aches, they are no longer constant.

With her fungal infection gone and her weight at a comfortable level, we got the OK from the doctor to start trying to eliminate foods to control her EoE without the use of steroids.  She has had so many other issues that needed to be dealt with and stabilized first and now that we at least temporarily have some of those things under control, it seems like a better time to start removing foods. Over the last 3-4 weeks she has started complaining more that her throat hurts again. Irritation from the NG tube should no longer be an issue. At the time of her last scope her eosinophil counts were way down, and we have assumed this was because of the steroid.  However at the time that those bioposies were taken, she had not only been on the steroid for 6 weeks, but she also had be fed a diet consisting almost exclusively of hypoallergenic elemental formula, so it is possible that the good results that we had were the result of a combination of the steroids and the restricted diet.  If that is the case, it would explain the return of her pain once she began eating an unrestricted diet again despite still being on steroid medication.  Either way, the hope is that she will start feeling better now that we have removed some foods from her diet.  The first batch, based on the allergy testing in the spring, is all dairy, eggs, peanuts and wheat. Then hope is that if she sticks to this diet for 6-8 weeks, her symptoms will fade and the damage will heal, which will mean that we have properly identified all of the foods that trigger her eosinophilic reaction. It has been almost 2 weeks and so far she has shown no improvement, but it's still a little early to tell.  In another 10 days if she is not starting to feel better, she will have to go back into the O.R. for another scope and set of biopsies.  I'm hoping that things turn around before then, but if not this will be her 4th trip to the O.R. in 7 months. Though she is complaining that her chest and throat are feeling worse, she is still eating pretty well and as of Thursday was still 38.4 pounds, which is a relief even if she does need another procedure.

All in all, she has handled everything that she has been through in the last 6 months really well.  After all, the kid is only 5 and she has been in and out of the operating room 3 times, hospitalized for a week, feeding tube dependent for 2 months and loaded with medications.  She has now had to drastically change her diet and despite pushing through all of this with uncommon spunk, she has been in varying levels of pain the entire time, and probably for almost her entire life. 

She decided to be Wonder Woman for Halloween this year, and when I asked how she chose that, she told me that she wanted to be a super hero, but if she went as herself, it wouldn't be dressing up. Good point, little one.  She's one of my heroes, that's for sure.