Settling In

It has been just over 2 weeks now since Lu got her tube installed and started on the Elecare amino acid diet. We've had a few hiccups and it's been a steep learning curve but for the most part, it's all becoming routine now. Mixing up the food, cleaning the equipment, administering the food, cleaning up the equipment, cleaning the stoma around the button, putting gauze on and taking it off. Because we feed her every four hours and each feed takes an hour we really have to plan in time for each feed and the cleaning around it into all of our activities each day.

So far we've been trying to have Lu lie down for the feeds because the wound has not yet healed and it seems painful for her when we mess with it. Lying down is the easiest way to get to it, get the food in and get it out again without the tube getting yanked on or caught up in anything. Hopefully we will eventually get to the point where she will know to be careful of the tube and the IV pole and can sit up at the table to feed, or have the pump going while she does therapy, or sits in her car seat in the car. But for now, we keep her quiet and still. Which means she has been watching lots and lots of movies.

She has actually watched so many movies now that she seems tired of watching movies; something I never thought I would see. We try other things too, flashcards, reading books, but movies usually seem to hold her attention the longest.

It has also now been over a week since we moved into our new apartment. We haven't really moved out of the ranch or anything. Stew still has to be out there most of the time. But after a year of driving the girls in and out and in and out of town, staying over at my mom's and renting a small office space for therapy (where the other tenants complained about the noise of kids doing therapy because they are trying to conduct business next door) we decided that it really was necessary for us to get our own place in town. The two hour round trip drive in the car to get to and from town each day was such wasted time in all of our lives, but especially for the girls. It was two hours of the day when they could space out into autism land and we want to give them as little of that kind of time as possible. Plus it is so much easier for them to receive services for speech, OT and ABA therapies without needing the therapists to drive all the way out to see us some of the time. Just paying for everyone's time to get out to see us was getting to be too much.

So here we are now, settling into our new place and our new routine. Unfortunately a few other new things have come up at the same time, like Lu losing her very familiar and well trained one-on-one classroom aide as of the end of February. I won't pretend I'm not alarmed by this. The thought of sending her into school with this new button in her belly while it is still sore and unhealed with a stranger to look after her is causing me a lot of distress. For the last two days I went with her and stayed with her at school because I just couldn't bear to leave her after all she's been through lately. I was worried it was too soon to send her back. We're scrambling to find someone new, get her trained and in place as soon as possible. I just wish there wasn't so much new stuff for Lu to take in all at once. Any one of these things- surgery, new button in her belly, tube feeding instead of food, moving into town, or a new aide on it's own would be enough to throw most autistic kids off their game, but all of it coming together in less than a month, whew. Luckily Lu often surprises me with her toughness and resilience. I'm sure we'll work it out and make it through some how.

Lu's super awesome BCBA Dr. G is coming back next week to train the new aide and some new ABA tutors for her. Thank goodness. I always feel like things are getting out of control with Lu's program just before Dr. G comes back, then she's here for a week, whips everything back into shape, and by the time she leaves I feel like I can handle things again. That sure happened on her last trip here when she started working with Myffy. I've been feeling much better about things with Myffy lately. And much more stressed about things with Lu again.

But one of the most amazing thing through all of this has been watching Lu respond to having nutrients in her body. So many crazy things are happening to her and around her and yet her moods have been for the most part great. She's been super sweet and cuddly. She's even hugged Myffy and held her hand on several occasions without being prompted to do so. And I can see her growing again. During the week in the hospital and the week before she had lost a lot of weight. I could feel her spine through her clothes and count her ribs when I dressed her each day. And while I can still feel the spine a little bit, the ribs have a bit of flesh on them and her belly goes slightly out instead of being concave. Her color is great. Her eyes are clear. I've actually managed to take several pictures of her looking right into the camera now which was something that almost never ever happened without spending hours trying and trying to get a picture. I can't wait to really get going on her therapy program again to see if being nourished helps her with that as well. I hope so. I really hope so.

Oh and one last thing, we've had a lot of snow lately! Both girls have been pretty excited by this. Lu particularly loves kicking it with her cute pink cowgirl boots. She will go way out of her way to reach a pile of snow and kick it. She also likes standing under the eaves as they drip ice cold snow melt onto her head. I've been trying to discourage that. And eating the snow. But here's what the snow looks like out the window of the new place. All nice and white and fluffy.

Now time to get some sleep before Lu's IFSP meeting with DDD tomorrow morning. And then we need to start thinking about her IEP meeting with the school board next week. Gotta love all the acronyms in autism land.

Lu and her G Tube

Whoever it was that invented the G Tube deserves a great big smackeroo on the lips from this grateful Mom.  I won’t lie, this past week was terrifying. And each day Lu’s surgery was delayed by her RSV I couldn’t help wondering if this was really one last chance for me to call it all off. Was it really the right thing? Did it really have to be so drastic? I wanted to help her, but here we were about to have someone install a semi-permanent hole in her body, right into her stomach. How much was that going to hurt? How long would it take her to heal? How well would it work? How hard would it be? But the more we talked to all of the wonderful Docs and staff at Phoenix Children’s Hospital, the more we were convinced that this was the right choice for Lu. Things were past the point of us hoping she would come around and start eating. The time for action had come. G Tube time.

Lu was admitted to the ER on Monday and tested positive for RSV. This put her up in the isolation ward (after waiting in the ER for about 10 hours to get a bed) where everyone had to wear masks and full gowns around her all the time (except for us of course because we were already contaminated) which I think freaked her out a little bit. What kid wouldn’t be freaked out by a bunch of masked and yellow gowned grown ups sticking them with needles and putting cuffs on them that suddenly inflated and put pressure on their legs and put little lit up bits of tape that glowed on their fingers and toes periodically? I probably would have been freaked out too.

She was really dehydrated and low on nourishment when we checked in so she submitted to most of the prelims with some protest, but calmed down and cuddled with me in between each round of testing, questioning, and vitals taking. 

I was amazed at the ease with which the staff got her first IV in. It took just a moment to get the needle in then on went the arm supporter and all kinds of tape. Because she tends to try to get IVs out they end up taping it up so much it looks like she has her arm in a cast.

Tuesday was spent in debate, everyone trying to decide whether or not to go forward with her procedures or get her in better shape and discharge her until she got over the RSV. It was a tough call. Her resistance was extra low from being sick, but I was also afraid of being sent home with no reliable way to feed her. In the end it was decided that she would have her upper GI Barium Scope at 10:30am on Wed and that the surgery would be scheduled at 2pm pending the results on the upper GI.

The upper GI was tough. She had to drink a barium drink so they could watch it move through her system and she did not want to drink it and lie still under the imaging machine. After seeing her early resistance the radiologist wanted to cancel it. He thought it was too traumatic for her and suggested rescheduling it, but the whole point of the procedure was to make sure that there were no obstructions prior to the G Tube placement, so I didn’t see the point in doing it later if they really were going to put the G Tube in that night. So we did it. Tallulah spit so much of the barium out in fighting that she and I looked like we’d had a barium bath. But eventually it passed through her system without showing a twisted bowel or other obstruction.

And so on to the G Tube placement. Don’t you just love those release forms they make you sign in the hospital before they take your child away from you? The forms that outline all of the many horrible things that might happen and what they might have to do in the worst case senario?  My throat constricted and I clutched Tallulah to me as they read it out loud hoping she wouldn’t look up and see that I was crying. She didn’t. I signed. We cuddled until the anesthesia injected into her IV tube took hold and then they lifted her and took her away from me.

The surgery took a lot longer than they said it would. They said 30 mins. An hour later I was still waiting. Then another half hour. Worrying something went wrong. Just when I realized I hadn’t eaten in many many hours and got up to go grab something from a vending machine, the surgeon came out to tell me everything was ok. Thank goodness.

She opened her eyes a few times that evening/night, but mostly slept off the anesthesia. When she moaned in pain, they gave her morphine. She didn’t react well to this, slept too deeply, too hard and had some oxygen saturation level problems, which kept her in the hospital one extra day. (There was actually a really scary moment when her skin went grey, her lips went blue, the alarm was sounded and 6 people rushed in to her aid.)  

But finally, on Friday, they taught us how to do her feeds and let us take her to the hotel with us in the evening. Because of the scare we wanted to keep her close to the hospital for one more night before heading back up to Flagstaff.

When we got to the hotel Myffy was so happy to have her sister back. Myffy hadn’t seen Lu since she was admitted. All week long Stew and I had been doing shifts since Myffy wasn’t allowed in the hospital (because of RSV season) and Lu of course wasn’t allowed out. Every morning when Myffy woke up she would look around and say ‘Tu? Tu?’. Little Sweetheart. We were all so happy to have Tallulah back. My Mom drove down to Phoenix to stay with Myffy Thursday evening so that Stew and I could have some time together in the hospital with Lu to learn how to operate the equipment and feed her ourselves. Thanks Mom! That was a great help.

Since getting Lu back to Flagstaff things have mostly gone well. We had a scary setback when she started throwing up the tube fed food for a couple of days.  3 out of 5 feeds coming back up was alarming. This was our absolutely last resort for feeding her. If she couldn’t be tube fed, what could we possibly do? But after talking to the staff at the hospital we made some adjustments: smaller portions fed at a slower rate; and then when Myffy threw up twice in the days following we realized it may have actually been a mild stomach bug. Since then she has been handling her feeds well and even eating a few things by mouth: a pediasure pop here, a few potato chips (only potato, oil and salt on the ingredient list) there, a few pieces of popcorn and some juice. We’re trying to encourage her to still take at least a few things by mouth so that she doesn’t completely dissociate eating from nourishment and feeling full. But the most amazing thing about all of this is being able to feed her, really feed her, for the first time in ages, possibly since weaning. 

And I do feel that there has been a difference already. She's always been a happy girl, even through all of this trauma and trouble, but since getting these feedings she has seemed even happier. More clear eyed. More interested in the world around her. And even though she is in pain from the surgery (healing every day) hopefully the pain of her EE is lessening with each day that passes. 

I wanted to take a moment to say thank you to everyone who has written to express concern, send love, and asked how they can help. We really appreciate every bit of it. Dealing with special needs can sometimes be so isolating that even just an email or voice message, even when we aren’t able to immediately respond, means so much. Thank you for reading. Thank you for caring. Thank you for the outpouring of love and support. We’re all doing so much better for the love being sent. And we return it all, even if we don't have time to say so.  Thank you!

Eating Issues and the Feeding Tube

Well, we didn't really expect this trip to Phoenix Children's Hospital to be a cake walk; taking a child to the hospital is never an easy thing, especially for surgery, but this trip has been particularly hard. And it came at the end of a particularly hard week.

I realize that I have a difficult time describing Lu's eating problems to family and friends. Eating is such a natural part of life for most of us, a life-sustaining and enjoyable part of life that I think it's hard for most people to even imagine what it is like for Lu. We've gotten a lot of well meaning advice to either let her not eat and then come to it when she's good and ready because, after all, no child will really starve themselves to death; or to strap her into a high chair and not let her leave the table until she eats because eventually she will eat, or to actually force the food into her mouth and make her eat, kind of like when you make your dog take pills. Like I said, I know all of this is well meaning, but none of it really works with Lu. And believe me, we've tried a lot of things- read books, watched videos, attended feeing workshops, tried to be strict, tried making food fun, painting with it, cutting it into funny shapes, arranging it differently on the plate, tried to let Lu pick things out and help cook. We have tried a lot. Lu's therapist Dr. G came up with what I think is a pretty good analogy to explain things: 

Imagine being a 2 year old in terms of comprehension and being told that in order to grow you have to press your finger against a piece of hot metal every day. Maybe not hot enough to instantly blister, but hot enough to leave a small red burn every time. At first you might do it because your parents ask you to and it makes them happy, but after awhile the pleasure of making them happy will wane and the pain will overtake the pleasure and you will refuse to burn your finger. So your parents might try to entice, reward, even bribe you to touch the hot metal. And this might work for awhile too, but again, eventually the pain will win out and you will refuse to do it. So then comes threats and punishment, which again may work for awhile, but we are all animals and the adversity of pain will win out over the threats and punishment eventually. Especially if the pain increases over time, as it has with Lu as her EE has progressed. And I have always wondered if Lu actually connects the feeling of hunger with food. I'm pretty sure at this point that she connects food with pain, and it's possible that even if she realizes food relieves hunger pains, but the pain of eating may be greater than the pain of hunger. So this is why I don't think that allowing her to starve herself until she is ready to eat will work. She has been starving herself into the 'Failure to Thrive' category for ages now. Let's face it, the reason hunger strikes work in political situations is because it is really really hard to force someone to eat when they are determined not to. And I'm also not crazy about restraining, coersing and threatening her into eating when pain is involved because of the fact that I want her to trust me and believe me when I do tell her that something will or won't hurt her, is or is not good for her. I also want her to tell me when someone or something hurts her and have her know that I will believe her and take her seriously and do everything I can to fix the situation. I do not take this trust lightly. If I restrain and hurt her myself, meal after meal, day after day, what am I teaching her? That brute force wins? That I can make her do what I want/think is best because I am bigger? Or that her feelings don't matter to me? I don't want to teach her any of those things.

So anyway, these are some of the reasons that once she started refusing all food, and then finally water by mouth, we decided to pursue the feeding tube option. Like I said in the last post, we did not arrive at this option lightly. It took a lot of talk, a lot of time and a lot of tears to get here.

The thing is that once we got her down here to the hospital in Phoenix, we had to wait in the ER for about 10 hours for a bed to open up upstairs. And in the meantime, she tested positive for RSV. RSV, or Bronchialitis is basically just a really bad cold with lots of mucus and a chesty cough to most adults, but to kids, and especially infants, it can be pretty serious. Myffy got RSV when she was 2 and a half months only and it very nearly killed her.  Right now there is an RSV outbreak at Phoenix Children's Hospital. Lu was put into the isolation ward and the G Tube procedure had to be postponed because they don't want to put her under full anesthesia with a respiratory infection. The GI doc and the surgeon are both supposed to see her tonight and make the call whether or not to still try to do the procedure tomorrow, the next day or to discharge her (assuming we can get enough food/fluids in her to sustain her) and reschedule the procedure for later. What a mess.

Here's the skinny

Lu is getting skinnier. Skinnier and skinnier. We spent the past week trying to slowly introduce the new amino acid liquid food options into her diet and Lu responded to this, much as she did to our attempts at a GFCF diet so many months ago; with a hunger strike. She is now refusing pretty much everything but a few pieces of popcorn, a little bacon and some, not all, chocolate things. Normally she drinks one to two pediasures a day to help make up for the gaping holes in her diet. After trying to mix neocate chocolate into the pediasure, she has been flatly refusing both the mixed and pure versions. It is truly alarming. We're trying everything we can think of. We've even jumped to what I thought would be the last resort: steroid treatment. We've been doing the steroid/splenda slurry since Thursday with no noticable change. Each time she managed to spit some part of it out. This morning she fought harder than before, spit some out and then got so upset that she threw the rest up. We don't know what else we can do. We're out of ideas. Out of dietary options.

Which brings us to the new last resort: the emergency installation of a G-tube into Tallulah's stomach. We are not considering this option lightly. Cutting open her smooth, sweet, perfect little belly, oh god, it makes me sick just to think of it. I really did throw up last night as I googled and looked at photos of children with G-tubes installed. But what else can we do? Her normal intake was already below the nutritionist's minimum even before trying the new formula, and this new reduction places her in danger. A G tube could save her. It could allow her to get enough nutrition for the first time in years. It could even allow her to thrive. It's hard to imagine the word 'thrive' being used to describe Tallulah without the usual accompaniment of 'failure to' preceding it. I don't think anything we've had to do with either kid so far has been as hard as this. But here we are. What can we do but hope and move forward. Maybe she'll just need the tube for 6 months. Or maybe a year. Or two. Maybe by then she will be able to understand enough to make the decision to eat the foods she needs to eat to treat her EE. Or she can learn to use the inhaler for the steroids. It's not forever. It can be removed. But for now, it can save her life. We're leaving for Phoenix tonight and will try to get her checked in to the Phoenix Children's Hospital for feeding, rehydration, and to discuss the tube further with her doctor. She might even be able to have the surgery tomorrow. Then we get trained on how to use the pump and feeding equipment and how to care for the hole in her tummy. And then I guess we go home and start this new stage of life. My greatest hope is that with proper nutrition she will finally start to feel healthy. And that could make such a difference for everything. Without the pain she's been living with all this time, perhaps she will be able to focus better, learn more faster, take more interest in life, in other children, in the world. This could really make such a change for the best. I have to cling to that thought as we go forward. Here we go baby girl.

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.