Saturday, October 16, 2010

Welcome to Holland!

Most of us moms have seen this, but I just ADORE this saying, and when I'm feeling discouraged or overwhelmed, frustrated or let-down, I read this and I'm back on track again.

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Friday, October 15, 2010

New Design!

Happy Halloween (almost!) to everyone! I had some fun with this last night- got my mind off things, for sure. Enjoy!

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Wednesday, October 13, 2010

Eosinophilic Esophagitis.....

What a mouthful, right?

Gavin just got diagnosed with this chronic, long-term, seemingly heart-breaking disorder. I hate to say this, but in a way, it's almost worse than Grace's cardiac defect. At least with Grace, she doesn't experience chronic pain ALL day EVERY day. I know that is silly, but at this point, I am 100% overwhelmed.

Frustrating to think of two very chronically "ill" children. I had dreams of going back to work someday, now that seems doubtfully possible. Our days are filled with appointments, therapies, feeding battles (for both), and sleep, sweet, sweet sleep. I'm a self-described loner these days. Except for a very few close friends, it's hard to find others that understand me and my kids, and what we're going through. I'm having a pity-party day- and I'm in a poopy mood.

This too shall pass.... right?

Here's some info I found about the disorder. Happy reading!

What is Eosinophilic Esophagitis?

Eosinophilic Esophagitis (“EoE”, formerly “EE”) is an allergic inflammatory disease characterized by an infiltration of increased numbers of eosinophils in the esophagus (the tube that runs from the mouth to the stomach). This infiltration causes inflammation of the tissue lining the esophagus.

In a healthy person, there are absolutely no eosinophils in the esophagus. There can be a few in the lining of the gut, but there should be none in the esophagus. A few can be found with reflux. A biopsy with an eosinophil count of 15-20 or more per high power field (under the microscope), may be caused by Eosinophilic Esophagitis. Other potential causes are Gastroesophageal Reflux Disease (GERD), food allergies and irritable bowel disease.

Unfortunately, many people go undiagnosed for years, suffering with what can be severe symptoms. Some people aren’t diagnosed until they are teens or adults and seek treatment when food has become impacted in their esophagus.

Recent studies at Cincinnati Children’s Hospital have shown that Eosinophilic Esophagitis is even more common than other well known diseases that affect the gastrointestinal tract such as Crohn's Disease and Cystic Fibrosis. Eosinophilic Esophagitis is the most prevalent of the Eosinophilic Gastrointestinal Disorders.

The current (*) estimated prevalence of Eosinophilic Esophagitis is 1 in 2000.

(*estimate as of 2007)

Symptoms of Eosinophilic Esophagitis include:

blebul1a Reflux that doesn’t respond to acid reducing medication (i.e. Proton Pump

Inhibitors, such as Prevacid, Prilosec and Protonix)

blebul1a Nausea

blebul1a Vomiting

blebul1a Dysphagia (difficulty swallowing)

blebul1a Food impactions (food gets stuck in the throat)

blebul1a Abdominal or chest pain

blebul1a Failure to thrive (poor growth or weight loss)

blebul1a Malnutrition

blebul1a Poor appetite

blebul1a Early satiety (feeling full sooner than you should)

blebul1a Difficulty sleeping

In addition to the above, some people also experience pain in their lower limbs (legs, ankles & feet) which is not uncommon with GI disorders in general, ear infections, asthma, croup, migraines, mysterious fevers, and more frequent “colds” when they are reacting to a food. Behavioral changes have been reported in some children (*) and Autism Spectrum Disorders are not uncommon. (*If your child has ongoing behavioral issues, social skills difficulties or any developmental issues, you should speak to your child’s Dr and consider an evaluation by a Developmental Pediatrician.)


A diagnosis is made when an endoscopy is performed (by a Gastroenterologist) and multiple biopsies are taken. Eosinophilic Esophagitis can NOT be diagnosed by symptoms alone. An endoscopy with biopsies is the only way to properly diagnose EoE. Even if the esophagus looks fine to the person performing the scope, the biopsies may still show EoE. It should be noted that even if the esophagus looks normal, the presence of eosinophils (which would be seen in the biopsies) can, and often will, still cause symptoms. However, the Dr. may also see rings or furrowing, thickened folds, microabcesses, white plaques, etc. The pathologist will also look for tissue injury, swelling and thickening of the esophageal layers. With Eosinophilic Esophagitis, the eosinophils are limited to the esophagus and not found in other areas.

The formal diagnostic criteria should be in place soon, but Eosinophilic Esophagitis can be diagnosed when the number of eosinophils in a esophageal biopsy is greater than 15 – 20 per HPF (high power field) under the microscope. Multiple biopsies need to be taken, as it tends to present in patches. It is recommended that 4-5 biopsies be taken from each area of the esophagus: 4-5 from the top (proximal), 4-5 from the middle, and 4-5 from the bottom (distal esophagus), because with any less, it may be missed.

Once Eosinophilic Esophagitis has been diagnosed, food allergy testing is usually recommended to guide treatment. Skin prick testing (SPT) to different foods is the most common type of allergy testing, and may prove helpful, but EoE is caused by a delayed reaction, not an immediate reaction as is tested for via SPT. Patch testing, which looks for delayed reactions, is also being used with some success. However, it is not uncommon to have negative allergy testing and still react to those foods that are being tested. An EoE reaction can range from days to weeks as the number of eosinophils increase and cause damage to the esophagus.

Please note that if you or your child have previously had an endoscopy, but the number of eosinophils was not quantified (counted), you are still able to ask the doctor to have the biopsy slides reviewed and have them counted. Even if the biopsies are several years old, they can be pulled from storage (they are archived) and the can be reviewed / re-read. The report can then be amended to indicate the eosinophil count, even if it is zero.


There is NO cure for Eosinophilic Esophagitis, but the goal of treatment is to eliminate the eosinophils in the esophagus, thereby alleviating symptoms. The treatments include dietary restrictions and medications. Since EoE is usually food-driven (caused by a reaction to certain foods), most kids and adults with EoE respond well to dietary treatments, and this may be all that is needed for many people. However, once treatment is discontinued, the eosinophils along with the damage they do, will return. Treatment needs to be ongoing, which may mean continuing to avoiding the food triggers and/or taking medication.

Elimination Diet: Dietary restrictions are guided by food allergy testing (skin prick testing, RAST, and patch testing). Some doctors are recommending that the top 8 allergens be removed from the diet, in addition to the foods that were identified via allergy testing. The top 8 allergens include milk, egg, peanut, tree nut, soy, wheat, fish, & shellfish. Beef is also a common trigger of EoE, as are certain other foods. However, a person with EoE can be reacting to any food or combination of foods. While allergy tests are used to guide an elimination diet, there can be false negative and false positive test results. You only have to eat one food that was a “false negative” in an allergy test for the elimination diet to fail. When an elimination diet does not do enough to clear the GI tract of eosinophils (as evidenced by scope with biopsy), sometimes a stricter diet is needed. This may mean just removing some additional foods from your diet, or going directly to an elemental diet. Food trials can begin once the symptoms have resolved and the eosinophils are gone, as confirmed by a clear scope. They involve adding back one food ingredient at a time, looking for a reaction, to determine which specific foods are causing a reaction. Typically, one single food ingredient is trialed for a 2 week time, looking for a reaction. Some Drs vary the time period by patient (1-3 wks, typically). If no reaction is seen, another food can be added and the same time period applies. Usually, when 3-5 foods are added back, the person has another endoscopy and the Dr looks to see if the eosinophils have returned. If not, the foods are ok for that person to eat and they can move on to additional food trials. If the scope shows that the eosinophils have returned, all of the foods that have just been trialed must be removed from the diet once again. It could be that the person is reacting to only one of the foods, but without noticeable symptoms to confirm which one, they must all be suspected. Some people need to scope between fewer foods. Some even have even found that they need to trial only one food per scope, but this is not the norm.
Elemental diet consists of a medical food (elemental formula), without any proteins, either in its whole or incomplete form (pre-digested or hydrolyzed). Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.

Although new flavors are available to make the formulas more palatable, kids and adults who need elemental formula may have a difficult time drinking enough of it. To maintain proper nutrition, some require enteral feeding tubes, to allow the formula to go directly into the stomach.

Medications for Eosinophilic Esophagitis most commonly include steroids to control inflammation and suppress the eosinophils. Steroids are used if dietary changes do not resolve the symptoms. They can be taken orally or topically (swallowed from an asthma inhaler). Side effects from steroids often limit long-term use of oral steroids. Without removing the cause of the symptoms via dietary restrictions, the eosinophils will return once the medication is discontinued. The doctor will determine which, if any, medications are appropriate for each individual.

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Thursday, October 7, 2010


When Life Gets in the Way of Life....

I think I may win an award for the absolute laziest, worst, out-of-date, archaic blogger. Would you vote for me?

Well, since April- way too much has happened, so I'll keep it short and sweet (if possible- I've been known to ramble...)

Gavin is almost 9 months now!?! Where has the time gone? He's pulling to a stand all over the house, trying to walk and keep up with his big sister, who just started pulling to a stand a few months ago. Seriously- I have 2 WAY too mobile kids! Gavin has some medical issues, we've discovered over time, but we're taking it 1 day at a time, and getting things resolved. Gav had like 18 ear infections over the last 9 months, so we finally got tubes in last week- what a difference! He's babbling, saying "dadadadadadada"- of course, daddy is thrilled. I won't burst his bubble and let him know that most kids say that word first because it's easier than mama. We'll let him think he's all that and a bag of chips ;).... Gav also had a modified barium swallow in August. I fully expected normal results- we just were sick of the reflux. Sadly, he failed miserable. Penetration to all levels up to honey thickness. What a shock! So, we began simply thick and it was TERRIBLE! He had such terrible gas and stools, I actually had to go to Bath & Body Works and get portable sprays for my car, otherwise I would gag and vomit. He was drinking like 80 oz per day too, just going right through him. So, now we thicken with oatmeal... It's been going fairly well. Today we had Gav's GI scope. Again, expected everything to be normal, maybe some signs of reflux... I was wrong, AGAIN! I don't think I will go into any other procedure with expectations- I'm clearly doing this wrong!! Gav has abnormal esophagus bumps, nodules, and folds. Apparently, they did 3 biopsies, and we'll know more next week, but it looks like long-term allergic reaction. Unfortunately, we're already on the most hypo-allergenic formula on the market (and the most expensive!), Elecare. Our GI explained we will probably have to do a complete allergen workup to figure out what specifically is causing this, and then if it is in his neccesary daily food, find a medication to eliminate it, if possible. Good times!

Grace is HUGE! She's so tall!! Sadly, she's only 19 lbs (Gav is 17.8), but we're working on weight gain. She's eating by mouth, but we can't seem to get her to take in enough calories. She gets her night drip for 12 hours, at 30 calories, 2 ounces per hour. She had a cath last week. Conduit looks GREAT. Wide open. Still leaky, but they typically only replace if there is narrowing. Her pulmonary artery pressures were getting higher, and the viagra wasn't making much of a difference. The cath was to check pressures and intervene as neccesary, or possible. They tried ballooning her left side, unsuccesfully. They stented the left pulmonary arteries- success! They ballooned the right, and it helped a tiny bit, but the arteries are so close on that side, that if they were to stent, they'd lose an entire artery (collapse). They may take the route at a later date, but for now, they left it at that. The cath was supposed to take about an hour- 6 hours later, with unexplained bleeding in the surgery, she was in recovery. Grace is nothing but normal when it comes to cardiac procedures, so frightening! The next day, true Grace style, she was up and scooting, as if nothing had happened. Crazy resilient girl! Pre surgery her pressures were at 60, now they estimate them to be at 35- improvement! By Christmas, fingers crossed, we should be off all medications (viagra & aspirin).

Grace's continual "side-effects" of surgery, ie. complications, have us worried, frustrated and concerned. After talking with other heart mamas, we decided to look at other hospitals. Right now, Dr. Handley @ Stanford (Lucille Packard Children's Hospital) is looking at her records and putting together an operative plan. He's AMAZING and if there are extreme complications, Stanford is where she'll need to be. (I refuse to mention the "T" word...)

We moved into a bigger home- thank God! Our other home is still on the market, but we've got an approved short-sale, so only time will tell. Hopefully this whole thing will work in our favor, and we'll be able to buy again soon.

I considered going back to school, but with the kids and their appointments, therapies, etc. there is no time left. Which is fine, I'm okay with being home with them for a while longer. We'll see what time brings..

There is a TON I'm leaving out, I'm sure, but we'll catch up over time. Here are some recent pics of the kiddos- so big!!

My computer is being crazy stupid, so I'll post another blog with them... UGH!

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