Archive for September, 2010

I hate flaring!

So, Mariella has been pretty darn miserable in the lung department since we stepped down her Symbicort.  Neither her doctor or I were very optimistic that she would stay stepped down, but I really didn’t think that she would crap out so immediately.  Literally, in the almost 3 weeks since step down, she has needed some sort of rescue treatment nearly every day.  On the days she didn’t, she was still coughing off and on throughout the day.  It kind of feels like her lungs have been working to stay stable, and just got tired, and decided not to try anymore.

I’ve been keeping track in a calendar, so that I could go to the doctor with hard data (either way…good or bad)

Three days ago, she started really coughing.  Needing multiple rescue medication.  I called today, and tomorrow, she’ll be starting a course of prednisone, a course of zythromax and we’ve bumped her symbicort up to the higher dosage.

Right now, I’m sitting on the couch, waiting to give her a middle of the night treatment.  She got her bedtime dose later than normal, so I’ll be staying up a little later too.

AND, I’ve decided to let her stay home tomorrow.   She’s exhausted, and not getting good quality sleep, which doesn’t make for a happy little girl.

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Soooo….What the heck IS Gastroparesis?!?!

Now that we have an official diagnosis and a plan, I guess I need to start learning how to educate people on what the heck is WRONG with my kid, and how to best help her.

Gastroparesis (GP) is also known as “slow moving stomach.”  Basically, the contents of the stomach don’t empty at the rate they are supposed to.  One of the diagnostic tests is called a gastric emptying study (GES)  It consists of eating a small amount of barium laced scrambled eggs, and then having some sort of scan to tell how quickly the eggs empty from the stomach.  I’ve read values between 50% and 60% of the test meal emptying from the stomach in 90 minutes.  Mariella’s value was 20% in 90 minutes.

There are multiple causes, such as damage to the Vegus Nerve, Type I and Type II diabetes, and even stomach surgery.  However, up to 60%, especially in children, there is no known cause.  Mariella falls into that 60%.

The symptoms include vomiting, constant nausea, feeling full after just a few bites, and reflux.  Other symptoms include weight loss, or poor weight gain, and lack of appetite.

The implications on the lungs are secondary (though, I now know of 2 cases where gastroparesis was diagnosed because of the inability to get chronic lung disease under control)  Due to the reflux that is often present, small amounts of stomach acid can be aspirated into the lungs, causing lung damage.  Hopefully, if the stomach starts working correctly, the reflux will be under better control, and there won’t be so much acid being aspirated into the stomach.  Anti-reflux medication can help, but those don’t really STOP reflux, they reduce the amount of stomach acid, so that there isn’t as much damage to the digestive tract from acid erosion.  Any time material is aspirated into the lungs, damage occurs, whether that material is excessively acidic or not.

Treatment of Gastroparesis includes eating frequent, small meals, and reducing the amount of fat (which slows the stomach) and hard to digest food, especially when having discomfort.  This, of course, leads to a dilemma…the treatment of Failure to Thrive (usually weight at the 3rd percentile or so) includes eating lots of high fat foods, often.  So, which should be treated…the FTT or the GP.

There are medications to treat GP.  Reglan used to be the drug of choice, but it now has a black box warning, due to the possible neurological side effects.  As the Gastroenterologist said yesterday, the side effects have always been there, doctors are just a whole lot less “tolerant” of them.  Reglan can work against the Dopamine receptors, which can cause Parkinson’s Syndrome like symptoms…which, in some patients are permanent.   The current drug of choice is Erythromycin.  It causes stomach contractions that help facilitate the more normal movement of food through the stomach.

There are other treatments that are being used, but are not common.  One is an electronic pacemaker, another is botulism toxin.  Apparently, there is also a class of Antidepressant that will work in GP that does not respond to other medication.

SO, that’s my kid’s diagnosis, in a nutshell. (a really LARGE nutshell)  I kind of feel like I’m hanging all my hopes on this medication…and when someone does that, there is a huge chance that they are going to be disappointed…I hope we aren’t disappointed.

We have a PLAN!!!!

This morning started early, we were out the door before  7:30am.  It takes two hours to get to Boston, so we were factoring in a bit of time for traffic.  Of course, today was an even heavier traffic day than usual, and I called the clinic in a bit of a panic at 9:30, when we were sitting in traffic on Storrow Drive.  Basically a “so close, but yet so far away” situation.  Apparently, everyone was running late, and the receptionist told us  not to worry about it.  Unfortunately, we ended up sitting in the waiting room until after 11am, for our 9:45 appointment.

First, we saw the intake nurse, who took the history and medications, etc.  She was very nice and was very sympathetic to our situation.

Then the Pulmonologist came in.  She looked at the records that we had sent, and that we brought.  She asked about a few things.  Mariella has a few tests that have ambiguous results…an endoscopy that shows eosinophils, and then 2 that do not, so she wanted to check blood test results too.  Then she asked the question that I always hear…”Has she been sweated for CF?”  She decided that Dr. Duda is treating her as effectively as can be, and she doesn’t want to change anything.

Then the Gastroenterologist came in.  He had looked at her scopes, and her films, etc, and looked at her blood test results.  He went over them with me.  He is confident that we are not looking at Celiac Disease, or IBS/Crohn’s.  What struck him was the Gastroparesis.  Her stomach empties 20% in 90 minutes.  It is markedly slower than normal.  Combined with the fact that she has symptoms, warrants treatment.  She’ll be starting Erythromycin tomorrow, as soon as the pharmacy gets it.

Then the ENT came in for what he called a “social call”  Mariella doesn’t have any ENT concerns at the moment.  He just wanted us to meet him, so that if she ever DID have concerns, we would know him.

As we left, we saw our friends there, who happened to have an appointment today as well, so I said hello.  B and his dad were there…so I talked to Sherry on the phone later.  She told me that Dr. Hardy (the Gastro) said to her husband, “I can’t break confidentiality, but I know you know someone that is here today.  I don’t understand what is wrong with the gastroenterologists out there in western MA, that they won’t treat Gastroparesis.  Now I’ve got TWO patients who have to travel 2 hours to get the care they need.”

I’m happy to have a plan.  It might not work, but it’s a starting point.  If it’s not the end point, thats fine, we can travel the path…I’m just happy to finally have a firm path.  I don’t think that any of us expect Mariella to ever NOT have asthma.  We just would like her to have asthma that can be controlled.   We feel like getting her belly and reflux under control will go a good way toward getting her lungs under control.

Plans are good.

Remembering 9/11/01

Nine years ago this morning, I was woken by my nearly one year old daughter.  Rob was already at work, he was still working the morning shift…he had left the house at about 2:30am.

I remember being slightly irritated that Abby had slept so long.   She was not usually a good sleeper, so I often either forgot to set my alarm clock, or I would turn it off in my sleep.  It’s much easier to ignore a blaring alarm clock than a blaring child.  I remember looking at the clock, and thinking…”great, we’re going to be late.”

I was working as a nanny, and Abby came to work with me.  It was a wonderful arrangement, I got to raise my own daughter, and still be working.  We got to the house, and I fed all the children breakfast.

It was time to get the oldest on the bus for kindergarten.  For some reason, I brought my cell with me.  I wasn’t usually in the habit of walking to the bus stop with my cell…it wasn’t a constant appendage as it is now.  It was a beautiful day.  Still warm.  Ben didn’t want to go inside, so Abby hung out in the stroller and I sat on the steps as he ran around the yard for a little bit.

Then, my phone rang.  It was my boss.  She had just heard on the radio about the plane hitting the first tower.  I’m not sure why, because no one else seemed to think “terror attack” first, but I immediately thought that we had been attacked.  I figured it was over, though.  She told me to turn the television on in her bedroom, and not to mention the plane, as both families (mine and my bosses) were traveling by plane to Florida later in September.

I remember watching in horror as the second plane hit, as the towers fell.  The footage of the people, broken and scared.  The masses walking across the bridge.  I remember hearing about the plane hitting the pentagon, and the fourth crashing in Pennsylvania.

Then, I remember feeling fear.  Both my brother and sister-in-law were travelling quite regularly from Logan to LA.  I spent hours on the phone to my mother, trying to find out if they had been scheduled to travel that day.  There was no cell service, and even the landlines were so clogged with usage that it was impossible to get through anywhere.

Finally, I couldn’t watch the television anymore.  The image of the towers falling is forever embedded in my mind.  I gathered Abby and Ben and we took  a walk around the block, waiting until it was time to get Becca off the bus.  As soon as she did, I piled them into the car, and we went to lunch.  I needed to be around people.  As we were driving, Becca leaned forward a little bit and said, “Sara, it’s SO weird…I haven’t seen ANY planes in the sky since I got on the bus.”  She had no way of knowing that all aircraft had been grounded.

After several hours of trying, I finally got in touch with my mom.  As far as she knew, neither my brother or sister-in-law were scheduled to travel, and I finally felt a little better.  I wouldn’t feel totally better until I heard for sure that they were OK.

I had never quite understood what my dad meant, when he said that he could remember to the minute his day, the day that JFK was shot.  I learned on Sept. 11, 2001 exactly what he meant.

I remember every day, I will never forget.  God Bless all the people we lost that day.  Those who thought they were just going to work that day, who never went home.  Those who boarded a plane, never to get to their destination.  Those who boarded a plane, and took matters into their own hands, and became heroes.  Most of all, those who ran INTO a building that was burning, to hopefully save some lives.

Our country changed on Sept. 11, 2001.  There is nothing to do now, but look forward and move on….but we must also remember to look back, to honor those we lost.  To never forget.

WHY we’re concerned…

I seem to have a devil of a time getting people to understand that it IS NOT Mariella’s size that is our concern or our issue.  We don’t come from tall genes.  I was taller than my grandmother by the time I was in eight grade, and I’m only 5’3″ on a good day.  My mother in law is barely five feet tall.   It’s no surprise that my children are destined to be smaller than average.

What IS a concern is that she doesn’t grow…seemingly at all.  Not only that, she LOSES weight.  She obviously doesn’t lose height (unless she was measured wrong at the last appointment…THAT’S happened before)  When she was born, she was in the 50th percentile for both length and weight.  A nice, average sized baby.  She stayed in the 50th percentile until she was 2 years old.  Then she got sick, and she stopped growing and she started losing, AND she started losing percentiles.

First, it was a drop to the 30th percentile.  We figured that she was just evening out to where she was going to stay…or that she had some issues from prednisone and the vomiting.  Then she dropped to the 15th percentile.  Then we started to get concerned…but figured she was young yet…we would get everything under control, and then maybe she wouldn’t catch UP…but she would at least start growing again.

Currently, she is under the 3rd percentile for weight, she is in the 8th percentile for height.  Quite a radical difference from her first 2 years of life.  THAT is why we are concerned.  THAT is why her weight is such an issue.  If she had started off tiny, and stayed that way…no big deal…I don’t care about having a kid that’s small.  It sometimes feels like people think I want an amazon child…I don’t.  I just want a child that grows in the expected and healthy way.  If she grows along the same curve, even if it’s along the 3rd and 8th percentile.

I guess I’ll stop making mention of it to people that don’t understand.  I don’t think I’ll ever make them understand.

Nothing like spending the entire day on edge…

Two things going on in our little corner of the world.  Abby had an appointment to look into a skin tag on her bottom.  Turns out it’s not really a skin tag, but a fissure…and what we thought was a skin tag was just external irritation and inflammation of the fissure.  We have a steroid ointment, lidocaine, and Neosporin Plus.  In addition to that, because fissures are usually caused by constipation, we have to do Miralax every day.

Miralax is a nice gentle laxative/stool softener…though, at it’s normal dosage, it CAN cause diarrhea.  So, I sent Abby off to school with several changes of underwear to bring to the school nurse.  I shot off an email to her teacher (with Abby’s permission) explaining the situation.  Her teacher was awesome.  She suggested letting Abby use the nurses bathroom if she was uncomfortable using the girls room.  I told Abby to try and follow the class bathroom procedures, but if she had a sudden urge, she should just leave and go to the bathroom immediately.

I called the nurse to tell her what was going on…left a message, and she didn’t get back to me.  Several hours later, I called back…and, as is her tendency, she tried to make me feel like an idiot for calling.  However, no one knows my kids like I do, and I still have to be proactive in their care (both physical and mental) so I will continue to call the nurse if I need to let her know something.  Maybe the next time I’m in, I’ll ask about her school email, so I don’t have to always call.

Mariella had a horrible morning.  Her tummy hurt more than usual when she woke up (trying to figure out what she ate that might have done it) so she had a baby tums along with her normal Prevacid.  She started whining about how “hard” it was to put on her shorts.  The shorts fit, they’re too big, actually, and she’s worn them before, often…so they weren’t really HARD.  That sort of whining over ridiculous things is often (read:always) a prelude to a vomiting episode.  Usually that day, but not always.  So, I can’t really keep her home because she MIGHT throw up…off to school she went.

I spent the entire day hoping that I didn’t get any calls, either that Abby had diarrhea so bad she couldn’t stay at school, or that Mariella vomited, and did I need to come and pick her up.

Hopefully, tomorrow will be a better day.

Trying to get my rational brain and my mommy brain on the same page

I’ll start this by saying I KNOW that Adrenal Insufficiency is a super, SUPER rare side effect of stepping down inhaled steroids.  My rational brain knows that the chances of it happening to Mariella are slim to none.

That said…My mommy brain is completely freaked out.  Mariella, for all the stuff she DOES get, has never gotten headaches.  Abby gets them all the time, I get them all the time.  Mariella doesn’t seem to suffer from them like Abby and I do.  One of the symptoms of Adrenal Insufficiency is a headache.

Last night, I had a headache…I’ve sort of been fighting this one for about 2 weeks.  I was tired, and really just didn’t want to cook, so I brought the girls out to supper.  While we were waiting, Mariella cuddled up to me (not unusual) and told me that her head was hurting.  I cut an Advil in half, and gave it to her.  By the time we got our supper, she said she felt better, and by the time we were done, she said it was all gone.

Today, Rob brought the girls to Saratoga, to the horse track.  I know…it sounds like an odd outing, but Abby is a bit horse crazy, and loves to watch them.  They love picking who they think is going to win, and it’s just a nice day outside.  It’s wasn’t disgusting out…so it was good for the girls to get outside.  Rob pays a little extra, and gets seats under the pavilion, so they aren’t sitting in the sun all day.

About 5:30, he texted me, asking me what to do if Mariella had a headache.  I sent him with her inhalers and the compressor and meds, but no painkillers.  So I just told him to find out if she thought she could make it home, or if he needed him to stop and get her some.

So, while I know that Adrenal Insufficiency is really, super rare…but so is Mariella getting headaches.  I don’t want to freak out…but I also don’t want to ignore something that might be an issue…AND, of course, it’s a weekend…so if I call, it’s the emergency number…which may or may not get me HER doc…and I don’t know any of the other docs at the practice.

Deep breathes…it’s going to be totally fine…I know it is.  Just working hard to get the slightly irrational mommy brain in step with the rational part of my brain.


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