Friday, June 11, 2010

Illness, appointments and procedures...Oh My! (The reason I'm still a SAHM.)

I've been a SAHM since my son was born, 12 yrs ago. I did think I'd go back by now, but that hasn't been possible. Too many illnesses, appts and procedures to hold a job; even a part-time job. I'd be let go within 2 wks. This week is the perfect example.

In this case, it seems like he just has a cold, although it's difficult to tell of it's that or if he is reacting to something he ate in the past few weeks. One of his food reactions is to get what seems like colds. We never know for sure until he's scoped, so we have to keep going with the food trial even if we suspect it (unless he's vomiting, etc). He is in-between food trials right now, so we let him eat some of the foods that he hasn't trialed yet, but only those that are not common trigger foods. He has, however, eaten a lot of strawberries, so if there is a food culprit, that is the most likely.

He's feeling lousy today. He was home yesterday and the day before, but thought he felt well enough for school today. That didn't turn out to be the case. I got the call at 10 am to let me know he needed to be picked up. At least I got a chance to run a couple of necessary errands first. I'm a room mom for my daughter's class as well, so I'm getting ready for the end-of-the-year party. In the northeast, school lets out in June, unlike the rest of the country. We had several snow days this year, so the kids have to make up 3 of them at the end of the year. School won't let out here until 6/22.

I can't even begin to count the # of days he has missed this year. It's a bit overwhelming. I guess I'll find out when I get his final report card. He has not only missed whole days, but he this year he started to get some new symptoms, which were very confusing and took awhile to figure out. He missed a whole heck of a lot of class time as a result, and it was very common for me to get calls from the nurse to come pick him up. He had transient dizziness for 2 yrs, but he could always keep his balance, so no one knew what was going on. We had lots of tests and they were all normal. So, one day I decided to have him see a neurologist; the one my daughter went to see when she had a bout of ataxia at age 3. She was hospitalized for 3 days at that time, all tests came back fine, and the neurologist told me it was an early sign of migraines. She'll develop them when she gets older. So, I thought it might be a good idea to pursue that possibility. Sure enough, it was a very likely cause. Unfortunately, it had taken close to 2 yrs to figure that out.

Well, that migraine diagnosis (migraine variant) was confirmed this past October when he started to get all of the other symptoms of migraine.....all but the headaches, that is. Talk about confusing! The teachers thought he was making it up or at least milking it or making it seem worse than it was. Nope! He was having severe migraine symptoms, but they were all subjective (not verifiable). Thankfully, I sat in on a meeting where they were telling him of the dangers of being "the boy who cried wolf". I asked them to allow him to go to the nurse to be checked so that she could verify there was nothing wrong. They didn't want to, but agreed. Thankfully, because it was there that we noticed something called "nystagmus". His eyes were darting side to side very rapidly. That was not something he could do voluntarily! Sure enough, that was something that occurs with migraines, as I found out later that day at his Dr's appt. His pediatrician confirmed the migraines and wrote a note to school to let them know, then we had to make another appt with the neurologist. I do not blame the teachers, as it was easy to make the mistake that he was making it up. The thing was that he never had before. I realize that could happen at any time, considering his age, but he has always been very honest about what he was feeling, if he could even explain what he was feeling, that is. That's another problem altogether, and is a part of the Asperger's.

...more to come...need to get him to a Dr's appt now....
Ok, it's just a virus as I suspected. It's going around. All is well, but illnesses and other medical issues are just the norm here; more so with my son than my daughter, but she has had her share of medical issues as well. If it isn't one, it's the other. Again, this is why I'm home.

Last year, I actually had the audacity to think I might be able to take an online medical billing and coding course to try to do something part-time or even at home. The majority of my work experience is in personal lines claims so while it's different, it would still be similar. I signed up for it and paid for it but, like I said, I had the AUDACITY to think I could actually take the course. HA! Of course, things happened all at once and my job as mom & caregiver took precedence due to lots of medical issues & school issues (both overlapping), let alone my father (who has Parkinson's) falling and breaking his arm in 2 places thus needing to be placed in an acute care facility. My mom needed help focusing on what to do and dealing with her anxiety over the whole thing. It was soon decided that he needed permanent placement. So, that was something else. There's always something, and that's fine. That's just a part of life. There are always challenges to meet head-on and overcome. Everyone has something going on in their lives, and many have much more to deal with than we do. We've also met and overcome much greater challenges, and we will continue to do so. Again, that's a part of life.

So, since I still can't go back to work and the kids will be out of school in 2 weeks, I decided to try out blogging. I'm a novice and I'm a bit long-winded, but I'll try to learn to condense what I want to say.

I've been involved in online and local support groups for years, but have backed off a bit in the past year for various reasons, including the above. I had been more involved in an online support group until last year.  I'm still involved in support somewhat, but not nearly to the same extent. The local group needs my attention (we haven't met in a year). I hope to get that rolling again soon. Sometimes you just can't do it all. We might try, and sometimes we may even succeed, but we all have limitations. :-)

Again, thanks for reading.

Thursday, June 10, 2010

First Post - Our Journey

My son has Eosinophilic Esophagitis, which is also abbreviated "EE" or "EoE". It is considered a "rare disorder", but as more people are being diagnosed, it is becoming evident that it isn't quite as rare as once thought. It is a immune-driven disorder. The body's immune system is confused and mistakes foods for an invader. It sends a particular white blood cell, called an eosinophil, to fight the invader. Since there isn't anything to fight, the eosinophil breaks open and spills it's contents (it "degranulates"). Those contents include a neuro-toxin that is meant to kill parasites, etc, and that is what damages the lining of the esophagus. The damage is not immediate like most food allergies, but delayed, making it a bit confusing and more difficult to figure out what caused the reaction, or to realize it is even a food reaction at all.

Since it isn't an immediate reaction, the normal allergy tests (SPT and RAST) are not always going to be helpful. Skin Prick Testing can be helpful for some, but not the majority. Even with regular allergies, there is a 40% chance of false positive results with Skin Prick Testing as it is. RAST has proven not to be helpful and is not used by the Drs who commonly treat EoE. PATCH testing is used and is also helpful for some, but not everyone, and there can be false positive as well as false negative results.

The damage is internal, so it can only be diagnosed via endoscopy with multiple biopsies of each area of the esophagus, because it presents in patches. If you only get one biopsy of each area, it may be missed. You also can't just diagnose by the way the esophagus looks, as sometimes it may look fine but the biopsies show otherwise or, conversely, it may look like EoE but might be something else. Biopsies are the only way to tell. Hopefully, one day there will be less invasive testing that will be equally as accurate, but that is the only option for now. 

My son was diagnosed 6 yrs ago, when he was 6 yrs old, but he has had it since birth and displayed symptoms immediately. While many people only react to a few foods and are able to pinpoint those foods via an elimination diet, that did not work for us, despite eliminating 14 different foods. So, in his case, he needed to remove ALL food!

Since we are not fans of steroids, especially long-term (which was the only other option and would be a life-long treatment) and we wanted to make sure we knew what he can eat and what he needs to avoid so we can build a safe diet for him - one that he can follow when he is an adult as well so he can stay healthy. Thankfully, his doctors at Children's Hospital of Philadelphia (CHOP) do not encourage steroids either as the first line of treatment. However, they treat each child on an individual basis, realizing that what is appropriate for one child (and their family) is not necessarily appropriate for another. My son was prescribed an elemental formula. It is amino-acid-based with no intact food proteins for the body to react to. It allows the body to get the nutrients it needs without reacting, thus allowing it to heal. The most common ones used in the US are E028 Splash (which we use), Neocate and Elecare. Since the formula tastes quite foul, despite flavoring, he was not able to drink much of it and it quickly became evident that he needed a feeding tube.

He started out with an NG tube in January, 2005. NG = naso-gastric, which goes through the nose, down the throat, and into the stomach (his sister already had one for a different GI problem, which was fortunately only short-term). However, he has many sensory issues (sensory integration dysfunction) and the feeling of the formula going through the tube triggered his gag reflex. However, the elimination of all foods and the addition of the elemental formula allowed him to heal and become healthy for the first time in his life. So, since we knew it was going to be a long-term solution, he had surgery to place a G-tube (Gastric feeding tube) in April, 2005. It wasn't an easy decision but we knew it was necessary and would be the right thing for him. He thrived! He gained weight and grew exponentially at first, as his body caught up to where it should have been, had it been able to absorb the nutrients it needed all of those years. 5 years later, he still has the G-tube, so it was, indeed, the right decision.

In those 5 yrs, we have been doing food trials. While he has failed several, he has also passed many over the past 2 yrs, and his options are much greater now that there are more allergy-friendly foods on the market. My goal, which I think is a realistic one, is that he will have enough safe foods to remove the G-tube before high school.

I wanted to give a brief synopsis of our situation. I will also later discuss how it has affected his younger sister, as well as the less severe food issues we have experienced with her (she does not have EoE). Furthermore, since my son also has a diagnosis of Asperger Syndrome, and there seems to be a very large # of kids with eosinophilic disorders who are on the spectrum, I'll include our experiences in that regard, as well as resources I found helpful.

I started this blog to try to share some of our experiences, from pre-diagnosis through now, in hopes that it may help others who are dealing with the same disorder. While many with Eosinophilic Esophagitis will not have the severity of symptoms or react to as many foods, I hope to share our experience in a way that will help others regardless of age, severity, type of treatment, etc. I also plan to share some helpful tips, websites, products, cookbooks, recipes, etc.

I also want to point out that I am not a physician and I do not offer medical advice.  Nothing I say is to be used or construed as medical advice. You should address any questions or concerns about your specific needs to your licensed healthcare professionals (physicians) and never delay seeking medical treatment from your licensed healthcare provider as a result of anything you read on this blog.

If you want to learn more about Eosinophilic Esophagitis or Eosinophilic Gastrointestinal Disease in general, please visit the American Partnership for Eosinophilic Disorders (APFED) at

APFED has several leaders in the field on their medical advisory board and the information on their site is accurate and up-to-date.

I also have a specific "About Eosinophilic Esophagitis" page on this blog. See the menu above on the left.

Thanks for reading! :-)