Archive for January, 2011

I Have to Admit It’s Getting Better, It’s Getting Better All The Time

I’ve been singing that Beatles song to myself a bit this week. Like a little pop-mantra. That and ‘Ooo child, things are gonna get easier.  Ooo-oo things will get brighter.’  Pop music for the tough times in life.  And it’s been working.  That and the fact that things really are getting better.

Myffy did her first day of ABA last Saturday and has done it everyday since, just like Lu, and she’s doing awesome.  It’s tough.  She’s always wanted to get up into Lu’s chair because Lu got so much attention in the chair, but now that she’s really there and has to stay and do work, well, it doesn’t seem quite as exciting anymore.  But she has had a lot of success and it’s so cute to see her clapping and cheering for herself along with everyone else when she matches objects or imitates gestures. Go Myffy go!  Go Myffy go!

I’m also really excited about the new Lineagen Genetic testing kit that I just received in the mail.  My original intention was just to test Myffy, but after talking to a genetic counselor on the phone for awhile we decided to test Lu first since she has the confirmed diagnosis and see what comes up for her.  Only about 20% of the test groups with a confirmed diagnosis of Autism test positive for the exact chromosomal abnormalities targeted by this test, so it’s far from a sure thing, but considering our family history, Lu is a good candidate.  If something shows up for her, then we’ll test Myffy for the same thing.  So we’ll see how that goes.  The point of doing the testing is to be able to get Myffy services earlier than Lu did witihout needing to demonstrate as much of a delay.  Because the thing is that Myffy is really quite advanced for her age.  She has a relatively large vocabulary and a lot of skills. In order to be eligible for the program that Lu is now benefitting from Myffy would need to either demonstrage a 50% delay for her age (which I don’t think she has at the moment) or have an established condition, like chromosomal abnormality (Downs Syndrome for example or the Fragile X category of Autism) that puts her into an At Risk category for Developmental Delay.

Myffy went to the pediatrician this past week for her slightly late 15 month well check (she was sick last time we went in so it couldn’t really be a well check then) and to get an AZEIP referral.  That’s Arizona Early Intervention Program.  We started that process with Lu around this time last year.  Which now seems so very long ago.  So next week we have Myffy’s allergy appointment Tuesday morning, her appointment with Lu’s diagnosing psychologist Tuesday afternoon while Lu is in school, and the AZEIP intake appointment Wednesday afternoon, with therapy for both girls everyday all around those appointments.  Stew is doing a two day parent training session at SARRC (that’s the Southwest Autism Research and Resource Center) in Phoenix on Monday and Tuesday and will pick up samples of all the amino acid liquid diet options from the nutritionist at Phoenix Children’s Hopsital while he’s there.  When he gets back we’re planning to spend a week or so trying to get Lu on whichever drink is her favorite, and then the next week will start the elimination diet.  We saw Lu’s GI this past Tuesday when we were finally able to snag an appointment someone else cancelled and went over all the EE options in greater detail. And as we talked it over with her, it all seemed much more manageable than I orignally thought.  And in a way Lu’s been making it seem easier this week by refusing toast and milk on her own.  It does seem like they bother her when she eats them.  I’m worried about her losing weight and slipping backwards right now, but if she doesn’t even want to eat the things she’s not supposed to eat, what else can we do but move forward with this?
And so, forward we go.  Things can only get better.

Myffy’s Intervention

I realize once again that Myffy has been under-represented in this blog.  And that’s mainly been because I’ve been mostly blogging about Autism (and more recently EE) here lately.  Which makes sense since it consumes my thoughts most of my waking hours.  But, well…

The thing is…

There’s just no good way to say this, so I’m going to say it as plainly as I can.  Over the course of the past couple of weeks Myffy has begun to show early signs of regressive Autism.  These are the little things that we kind of noticed with Lu and allowed our pediatrician, ourselves and well meaning friends to assure us were normal and probably just a stage.  Nothing really to worry about.  All kids are different.  Kids develop at their own pace.  Etc. etc.  Little things like refusing to make eye contact.  Refusing to use words we know she can say.  Screaming over tiny things that don’t quite go her way, things that wouldn’t have fazed her less than a month ago.  Becoming inconsolable, refusing physical contact, refusing food, refusing nursing.  We were hoping this was all down to her being sick.  And she was really sick.  We both passed one hell of a stomach flu back and forth between us a couple of times.  But we’re both over it now.  And even accounting for that, we just can’t ignore these signs.  Not with knowing all we now know about the incredible differences early intervention can make.  And the earlier, the better.

So do we actually 100% know that Myffy has Autism?  No.  Are we going to start her on an intervention program anyway?  Yes!  It can’t hurt her.  If anything it will just help to make sure that she acquires an age appropriate skill set in a timely fashion.  If she is actually at the very start of regressing, hopefully this will stop the backwards slide and get her moving forward again immediately.  And since having an Autistic sibling gives her a 1 in 5 chance of actually having it (as oppose to the 1 in 110 chance that every other kid born right now has) I think we’d be crazy not to be proactive here.

I’ll admit that half of me crumpled over this.  Especially so soon after Lu’s EE diagnosis.  Poor kids.  Poor me.  Poor Stew.  Can we really handle one more thing thrown on the pile right now?  But then we talked, and the truth is, who else is better able to handle this than we are right now?  I mean our physical, emotional and financial reserves are all low from going through this with Lu for the last year, but we’ve learned so much.  We have a trained team of therapists and habilitation workers who are already working with Lu.  And as of today Kris (aka Dr. G) has already started cycling Myffy through Lu’s early procedures and will tailor them to Myffy.  And coincidentally Lu just grew out of the tiny Montessori table and chair Mom had gotten her ages ago and we bought a new one a few weeks ago, so today we moved the tiny table out of Lu’s therapy room, replaced it with the new table, and put the old table in the dining room where Myffy worked with Kris while Jes and Kayla worked with Lu.  It’s going to be hard.  It’s going to be a lot of work.  But we’re all set up and ready to go.

Eosinophilic Esophagitis

It was my intention to write my next blog about how fantastic the holidays were.  About how well Lu did at our Christmas Party on the 12th, how fun and amazing Christmas Eve and Christmas Day were.  How incredibly Lu held up after her procedure on Dec 29th at Phoenix Children’s Hospital.  And how great New Year’s Eve was even with the difficult, pioneer element of insanely low temperatures and frozen water pipes thrown in.  So that was the plan.  I’d been thinking about this post for days.  And then I got the call from Lu’s GI Doctor with the results from her procedure.  A resounding diagnosis of Eosinophilic Esophagitis.  There was no question this time.  She was no longer borderline.  Back in August when they did the test I was told that they only diagnosed if there were 15 eosinophil clusters or more per frame.  At that time the most Lu had in any one frame was only 17.  This time there were hundreds.  Beyond counting.  Which means all this time our Lu has been in considerable pain.

I felt it again.  That cold fist squeezing my heart.  That familiar boot kick in my guts.  Stinging eyes.  And tears.  Not again.  Not Lu.  Not another bizarre, rare and little understood disorder with no clear cause and no single path ahead leading to a reasonably assured outcome.  Doesn’t she have enough to deal with?  Does it really have to hurt her to eat normal food?

Because here’s the thing, we’ve been told that there are three treatment options for Lu.  1. The six (sometimes 8 according to different websites) major allergen group elimination diet which involves removing all dairy including eggs, wheat, soy, nuts including peanuts (which are actually a legume), beef, poultry, chicken and a number of other random things I’ve already forgotten.  I think an anti-inflammatory diet is in there too since eosinophils cause inflammation.  The problem with this is that this removes every food Lu currently eats except for apples and carrots.  The only way we are sure she gets enough nutrients right now is by giving her 1-2 doses of pediasure every day.  She basically already on a half liquid diet.  And we already tried the GFCF diet which resulted in a hunger strike that made us worried we might have to resort to tube feeding.  Which brings me to option 2.  Liquid Amino Acid diet.  I think she said it is called something like Elemental Essentials or something.  But Lu would drink this, get all of her nutrient and caloric needs met by the drink, and could have nothing but water besides this.  Basically, this is what people get when they are tube fed.  And if she won’t drink it, on to the tube.  And finally, 3. The steroid option.  Topical steroids applied to the surface of the esophagus by inhaling an asthma style puffer.  With this option she can continue to eat what she wants, but the steroids really just suppress the inflammation rather than addressing the problem of her continued allergy to just about everything.  Oh and the allergens might not even be foods.  They could be inhaled.  They could be things like tiny particulates in the air and animal dander and hair.  All of which surround us every day on the ranch.  Oh and apparently current allergy tests are so inaccurate that they really cannot be relied upon to accurately identify all of the many things she could be allergic to, so this is why so many foods are removed from the diet.  Or all foods in the case of the liquid diet.  With the elimination diet foods are added back bit by bit, one at a time.  She would go 90 days or so on the strict diet, have a scope to see if the eos have cleared, then, if they have, add back one food for a period of time, have another scope to see if the eos have come back.  If they have come back, remove that food.  If they have not come back, let her eat it.  And so on.  And so forth.

What to do, what to do.  The truth is that at this point the inhaler isn’t much of an option.  It requires a relatively high level of both compliance and coordination to inhale just as the puffer is depressed to dispense the correct dosage of steroid.  Maybe in a couple of years when communication isn’t such an issue we could move on to this.  But even so, she’s just so young to be giving her steroids.  Just the thought makes me cringe.  And asking her to eat none of the foods she currently eats and only foods that she routinely refuses is going to be such a battle at every meal and every snack.  And how will she get enough nutrients and any protein or calcium without pediasure and tofu and all animal products?  But to remove food completely from her world and let her only drink this one drink and water.  It sounds so cruel.  So difficult.  So impossible.  And humans beings are such social eaters.  We eat every time we gather, every time we celebrate anything.  How often do any of us do anything social that in no way involves any food or drink?  Think about it.  She’s already autistic and has a huge social deficit.  Won’t this just separate her even more from the rest of the world?  Her family?  Her peers?

Well then next step is the allergy tests, such as they are, to learn whatever we possibly can.  We’ve decided not to start taking foods away willy nilly until we are sure of what she can still eat.  I mean, maybe corn?  Can she still eat popcorn?  Maybe dog hair is the biggest problem?  Or maybe just milk?  If she could keep either milk or wheat we might be able to make it work.

The funny (well, not really) thing about all of this is that I had just made an appointment with the local allergist to have Myffy tested because of her persistent and painful eczema.  And the chronic congestion.  They both wax and wane, sometimes almost going away or being so mild for weeks on end that I think she’s grown out of it like Lu did, but then it comes back when I’m not watching carefully enough, not paying enough attention.  And yes, we are also worried about Myffy.  EE seems to have a connection to eczema and asthma.  Looking at my family with the autism genes and Stew’s family with the allergy genes, well, what can I say.  Poor kids.  But we’re trying to learn more, understand more, make the best decisions for the kids that we possibly can.

And the weird thing is that since Lu went on the Prevacid medication last August, she really has been seeming so much better.  She’s been eating more, gaining a bit of weight (finally weighs 28 pounds now!), I can’t count her ribs anymore and she’s even grown out of some of the 2 year old clothes finally.  She’s mostly wearing size 3 with the waists cinched.  And she’s been happy.  I mean really happy.  Both kids have been.  Which is maybe why this was such a blow.  I was so sure the test was going to come back negative.  How could it be positive when she’s seems to much better?

But that’s about all we know about this for now.  If anyone reading this knows more, please write me!  I’d love to find out how these different treatment options have worked for some real kids and people.