CHOP

philly has cheese steaks & the BEST eosinophilic clinic

Thanks my new found friends on the Facebook EE group, I've learned there are clinics around the country that specialize in EE! Say what?! Possibly no more "this is a new disease, so we don't really know"? Well I'm sure there will be more of that, but at least they'll be on the same page.

I spoke with Dr. Pix and she is in fast agreement that a team approach is best in treating this disease and keeping Sully fit as a fiddle. CHOP will have a treatment team (GI, Allergist, Nutritionist) who will meet with us in the same room, at the same time, and be able to walk across the lobby to confer on treatment plan for the Sullster! Though we have no qualms about our current team, it is a bit daunting that they are all in different towns, do not know of each other, and have little communication. The best part is they all have knowledge of eosinophilic esophagitis.. and children. BOOM!

A phone call to the intake folk at CHOP, an email download and now I'm off to collect all of his records to start this process. We'll still keep Dr. Pix (she won't escape us that easily) and utilize his current specialists as needed, but CHOP will lead the direction of his EE care. After the mountain of paperwork is completed, wait 6-8 weeks to get an appointment, and we make the three hour trek down there.. one way.. without traffic.

Operation Sleep

cribs are merely for decoration

Much like his big sister Keats, this boy is a very very light sleeper. Come to think of it, he's a much lighter sleeper then Keats ever was. Since he was mini he would SCREAM when we tried to put him in the crib, he'd wake up once his noggin made the landing. It sounded like a terrified animal type of howl.

I agree with many of the attachment parenting methods, so co-sleeping seemed like fine solution. Keats would peacefully fall asleep in her crib while we sat next to it, starting around six months. If need be she'd end up in our bed during the night and snuggle until morning.

This is an entirely different situation, if I hear the "every kiddo is different" slogan I might throw yogurt on the wall. This isn't just a kid who doesn't want to be away from his folks so gives them a run for the money, this is a kid who will scream until he vomits, sweats like a BEAST and grabs ahold of my neck like he was hanging over a vat of hot lava. While sleeping he wakes up three to four times during the night moaning and now sobbing. He sits up straight, sobs uncontrollably for two minutes or so, then snuggles back up.

Dr. Pix spoke about him waking up in the night and being uncomfortable from the EE and needing the security of his mom being there. Totally understand and agree, yet I am only human, and this gets very difficult. Once I get him to nod off I try to work on the computer or catch some quality time with the DJC watching our favorite Uncle John Stewart. I'll hear the Sullster stirring and then the "thud" of him getting off the bed by his tum and the "bom bom bom bom" oh his little hands and knees on a mission to find his mother. He'll look up at me with that "did I give you permission to leave the room?" expression and point to the bedroom (that is not an exaggeration). I'll put him back on the bed and he'll snuggle up to his spot which is usually soaked because he is a crazy sweater.

Last night I wrote on an EE facebook group post asking about their sleeping situations. Responses about kids not sleeping through the night, co-sleeping, husbands sleeping on the couch, kids waking up in pain and moaning, are all regular occurrences. As terrifying as the prospect of not getting a good night sleep for a LONG while haunts me, it is so assuring to know this life raft I now call normal isn't empty.

MTV

After Sul was newly diagnosed with EE the DJC and i were watching the tube when an MTV special aired. True Life "I'm Allergic To Everything". What do you know, one of the teens featured was diagnosed with EE.

The young man is named "Zeke".. with a limited diet due to his allergies he has to drink a NASTY formula to get the nutrition he needs. The guy was insanely excited to try a morsel of allergen free chocolate chips, can you even imagine? The girl who shares the segment with him scares the BIZERKAS out of me and I can't wrap my head around her condition, so I fast forward through her scenes for fear of alerting the Allergen Gods and it becomes Sully's situation.

Here's the link :
http://www.mtv.com/videos/true-life-im-allergic-to-everything/1666298/playlist.jhtml

Zeke's fears a reaction because "it's the worst pain I've ever experienced". After he "trials" some tuna the poor teen doubles over in insane stomach pain. He can at least vocalize this, poor lil Sullster can only look at us with red eyes, fussing and a pissed off expression.

Hefty

is there a caloric value to sand? because this boy loves it

Sullivan went to see Dr. Pix this morning to jump on the scale and put up some big numbers!! Well, that number turned out to be 19lb 8oz but everything is progress! At last visit five weeks ago he was a hefty 18lb 14oz. At current fighting weight he is larger then 1.79% of other boys his age, did you hear that all you 15m boys? You are on notice.

The Juice

Sullivan has turned into a "juice head" or on steroids.. or whatever it is the kids call it these days. All I ever knew of it was it made my dad cry when he watched baseball. He started his medication treatment in July and we are hoping to see some results. Many people question giving a lil' man the "juice" and if we looked into holistic approaches?

Dr. Glass (GI) & Dr. B (Allergist) & Dr. Pix (Pediatrician) were in fast agreement that we need to treat and protect his esophagus ASAP and with gumption. As of now, Dr. Glass couldn't see any visible scarring during his endoscopy and we'd like to keep it that way. We are lucky to have caught this disease while Sul is still so young, many times it takes years to catch. This bEEast often masked as bad reflux and their little tract way from mouth to tum is so badly damaged they need a feeding tube in their little bellies. So yes, we are all for herbal supplements and teas but really feel juicing and a limited diet is the best and most progressive action at this time.

A few alterations and this is his current dosage :  

AM :

Carafate : 1/2 TSP

Pulmicort : 1 TSP

Prevacid : 1 CAPSULE

LUNCH :

Carafate : 1/2 TSP

PM :
Carafate : 1/2 TSP
Pulmicort : 1 TSP
Prevacid : 1 CAPSULE
Iron : 1 TSP


Seriously, I had to make a chart and paste it to the kitchen cabinet. Now, imagine trying to get a toddler to swallow medication, now imagine trying to get him to do it EIGHT TIMES A F*CKING DAY.. EVERY DAY. Nightmare. Especially since he's exhibiting "roid rage" on occasions. Lil' Baby Hercules.

(sorry for the cussing Pop-Pop).

the short of it..

Eating can be exhausting

Sullivan James was born a heafty 8lbs 13oz and continued around the seventy-fifth percentile for weight until he started eating solid foods around six months.

At five months we noticed the welts and hives. Our pediatrician, Dr. Pix was on maternity leave so we'd visit one of her colleagues to be told it was a possible rash that would clear up with topical ointment, this song and dance went on for three weeks. We took him to an allergist on our own steam and were told he's indeed allergic to : milk, eggs, possibly soy..

red really isn't his color



At eight months he started to "fall" on this curve which was a signal to Dr. Pix. Shortly after he began exhibiting seizure like jerks. A trip to a pediatric neurologist and a 24hr EEG were in order. Follow that up with an MRI to keep things square.

someone is not a fan of his newest accessory

The chart kept dropping, the hives kept popping, the head kept jerking. The first EEG results came back clean, but for good measure we decided to stick him in a crib for five days, hooked to another EEG machine, with a video camera on him AT. ALL. TIMES. Thankfully this gave us insight that his noggin' was in good working order.

  

monkey at the hospital zoo

 Not even a week home from the hospital stay Sully had a run in with his sister's peanut butter and jelly sandwich. He's done this before without harm, well this time the PB&J fought back.

PB&J is not your friend

A trip to Dr. Glass, a Pediatric Gastroenterologist (GI) and quick biopsy informed us that our little sprout suffers from a disease called Eosinophilic Esophagitis. I'd write the technicalities of this gem but I'm still learning the logistics myself.

I has been a LONG few months to say the least. Overwhelmed and bewildered do not do it justice.