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Saturday, November 15, 2008

Nowhere Fast in a Hurry

I actually do have some cool new pictures of Hallie from our friend Charlie's 3rd birthday party today to upload from the camera (that I wish was a D-SLR...she moves too fast for me to get good shots of her these days, and the limits of our little sony camera are palpable). But I'll do that later. Meanwhile, I just want to vent a little, so indulge me.

So, as anyone who is actually still reading this thing now that I've been remiss about posting pictures is fully aware, Hallie failed beef last week. We're still feeling the impact of this fail, as is typical for her, a week later. And when I say that she was 'eating beef,' do not even stop and imagine that she downed a slice or two of roast beef a day. Far from it. On day 1, she ate a half a slice. Probably the same on day 2. On day 3, not feeling quite herself, she had perhaps a few tiny bites (think a few millimeters each). On day 4, lots of refusal and perhaps a few tiny bits that actually got into her. On day 5, total refusal. On day 6, two tiny pieces and the vomiting began. And then we pulled the beef, but she just kept vomiting. It was that old school, awful projectile kind that emptied her tummy and made her -- and us -- very upset. Finally, the vomiting died down but the reflux--hiccups, urping, visible discomfort and gurgles in her throat--remained. We've logged another 2 days (I refuse to jinx today by saying anything about it) of vomit free existence, but only by modifying Hallie's intake to smaller meals and trying to keep her reflux at bay. So we've hit day 153 of vomit-free existence, but sadly we are no further towards our goal of having her eating more food and a greater variety of food. Instead, we spin wheels, we count (insufficient to achieve growth) calories, and we cross our fingers. But we don't actually get anywhere.

Except for the fact that we lose foods. When she flares in terms of her allergies, Hallie gets food averse. And then she seems to start reacting to foods that were possibly safe. This is now happening with prunes, also known as the only source of iron in her diet (other than a multivitamin that cannot quite provide her with all her needs, particularly since her iron stores were long ago depleted). She used to love prunes, and even ate boiled and fork mashed ones (not just the stage 2 baby food ones) but no longer does she eat them. Instead, she takes a bit, gags, retches, and we stop giving them to her.

This happened to apricots (which were never a clear pass) and bananas (that we thought were a pass).

So now we are down to four foods that we know are safe--white or yellow potatoes, goat milk products, apples and pears. We're keeping the prunes on board for now, but it's not clear for how long they will stay a part of our lives. We may be adding them to the large quantity of jars we pass on to Taylor when she's ready for solids.

Anyway, this is getting really hard to do. If we keep Hallie on her current diet (do we even have a choice?), we can get into her on a good day the following foods: 18 ounces of stage 2 fruit, give or take; 18 ounces of goat milk fortified to around 26 calories an ounce with concentrated goat milk; 3 ounces of goat cheese thinned with goat yogurt; and a few french fries (when her reflux flares, she refuses these; when it doesn't flare, she might eat 10 to 15 fries) and maybe a dozen or a few more of her beloved krinkle sticks that are all of 110 calories per cup. Maybe she'll deign to eat between a half ounce to an ounce of solid goat mozzarella. So, on a good day, we'll hit about 1000 calories. On a bad day, she might be at 800. On a really bad day, we eat all the calories and she does not. For the sake of reference, she needs about 1300 calories to keep growing. She is not growing. I'd be surprised if she doesn't weigh less than she did around her birthday (when she had more foods than she does now, and namely the nicely caloric banana. We pulled that because the vomiting described above happened and when we pulled it, things improved massively).

On top of this, she is on stage 2 baby food, except for the goat cheese (solid stuff; the chevre we mix with yogurt to get more into her) and the fries/krinkle sticks. We have made just about no progress transitioning to real solids, and this in spite of the improvement in her chew because her dysphagia is so pronounced that it is keeping her from swallowing the boluses that food turn into after being chewed comfortably.

So, clearly the platitudes of 'she'll outgrow reflux at age 1' and 'she'll start outgrowing her allergies at age 2' do not hold true for Hallie. And the more and more we continue trying and failing food, the more and more certain I become that she has an Eosinophilic disorder, and not a food protein intolerance. It's a matter of that which quacks like a duck and looks like a duck is in fact often a duck and rarely ever a cow. She has most of the symptoms of EE or EGE: intolerance to food, pronounced reflux, delayed gastric emptying with constipation, dysphagia, trouble sleeping when she flares, GI allergic reactions that are compounded by seasonal allergies, and often really stinky poops. And she has a really strong family history of food allergies, asthma, eczema and the like. She does not have failure to thrive, but the way things are going, we are headed there yet. And she massively improved when we pulled dangerous foods, and that would in fact be the treatment of choice, yet how are we supposed to handle all of this when the foods she has cannot possibly sustain her growth long term? We desperately need another calorie-rich food, but those are precisely the foods with which she has the greatest difficulty, and I haven't been given a crystal ball or anything that might help us shortcut the process to finding another safe food if, in fact, one exists.

And yet telling this all to the GI and allergist is landing on deaf ears. They scoped her in August 2007 and it was ostensibly clean (how were the scopes done? were enough biopsies taken? who read them and did they stick to the protocol established at the University of Cincinnati, which is the premier place for studying pediatric eosiniphilic disorders? Who knows, really, but I do know that I was not equipped back then to ask these questions, which is too bad, because they really are good ones.

And why is it that the traditional diagnostic protocol was not maintained for Hallie? What they needed to do was to RAST or skin prick test her first, then do a blood and stool work-up, then scope her, then move to patch testing. We missed the first two of these, and I'm not terribly confident in the third test for aforementioned reasons and also because the lung wash came up tainted, so who can be sure that the scope's results were accurate. Skin prick testing and patch testing might provide us with guidance about what to not even bother trying, so it makes sense to me that we should go this route, followed up by patch testing of foods we want to try. Not that we passed the foods that did not test positive on the patch; we didn't. But at least it will give us more information.

If it is an eosinophilic disorder, it may not change things other than provide her with a label that suggests that she has a chronic illness, and this would perhaps allow us to get elemental formula paid for by medicaid or something in the event that she has to go on this. It might also open up new therapy approaches for treating her dysphagia.

But, then again, rescoping her would mean purposely flaring her for six weeks, and I am not sure we want to do that and I am not sure whether that wouldn't make her food aversions all the worse in the long run.

So I am feeling a bit stuck right now, but I would love to get allergy and GI in the same room together so that we can start treating Hallie as a whole person and not as a one-or-another-system. That approach is failing miserably.

On other venting topics, now that I am at it and have worked up quite a lather here at the keyboard: pre-school. Our friend Anne has a post up about this, and this is something that we have been dealing with, too. Yesterday we had a transition meeting with the early intervention folks from Childlink (who handle birth-to-three) and Elwyn (which handles three-to-five). It is abundantly clear that Hallie qualifies for a continuation of early intervention services. Her speech is delayed by quite a bit, in what I think of as an oddly idiosynchratic way. She has a ton of words---hundreds, really---and she knows what they mean and she repeats stuff we say (more and more each day) but she does not use language to communicate, unless you count labeling (saying "elmo" when she sees Elmo; saying "stick" and holding it up when she has a potato stick) and counting (up to 20 with great accuracy) and saying the alphabet (in order, while attempting to sign and getting most of those signs right). She also has hundreds of signs and she uses these to label, too. But other than that "I want..." formulation and a few rote phrases ("how are you?" followed immediately by "i fine" and then quickly "bye-bye" into whatever stands in for a phone or, less clearly, "where'd it go?" and "there it is?" but the thing is that there really isn't a there there when she says the latter), she has no communicative speech whatsoever. It's very odd. She never babbled, and she certainly never had jargon. She got individual words, she kept individual words, and she's stuck on individual words. These are very accurate signifiers used appropriately with their signified, but they don't really allow for much in the way of conversation. So where does this put her on the expressive speech production front? In terms of the number of words, probably 22 months. In terms of communication, far beneath that. And cognitively, she's at least at age level if not above. But if this alone does not constitute the 25% delay necessary for keeping services, let me assure you that having to be strapped into a high chair and spoon fed stage 2 foods most certainly does. That's kind of at the 9 month level, with perhaps a few extra points for handling a french fry.

So, there's no question that she needs some assistance. The thing is, where can she get this? Well, one of her big needs -- and this too helps push her in the direction of needing EI from the 3-to-5 folks -- is in social skills/communication. She has no idea how to approach and interact with other kids. She's not been around many of them largely due to the circumstances of her birth, and her speech issues do not exactly lend themselves well to being able to communicate with her peers. So a preschool setting is ideal. But no private preschool (and since preschool is not a part of the formal educational system, most preschool is indeed private) would have her. Passing those nasty IQ tests might be an issue (even though she'd be great at the puzzles, sorting, building with blocks and such at this age). Once they got to the good old interaction part, we'd be doomed. She would need to do an interview at schools where she played in class with others and engaged in typical activities (circle time and such) and she'd give herself away then, if not sooner than that. Then you get to the whole issue of eating: montessori is clearly out because they won't feed a kid, and Hallie won't eat without us feeding her -- unless you count a few 'sticks' and assorted board books and blocks and stickers and other fun calorie-free stuff she can chew. But even non-Montessori programs wouldn't be keen on the whole high-chair-with-distractions routine. And then we get to the bottle issue and the potty trained issue, and it's clear that we are of the 'need-not-apply' variety.

I'm conflicted about the whole private pre-school thing, to be sure, but I would have liked to have had the option to at least thumb my nose at their high tuition-in-exchange-for-breeding-type-A-kids and not been ruled out as an applicant before I even downloaded their applications.

So, where does that leave us? The only option seems to be a Head Start program, and even that's not a given. Head Start was initially part of the Great Society program started under Lyndon B. Johnson -- in January of 1965, the committee of sociologists, psychologists, pediatricians, etc that he and Sargent Shriver and Dr. Robert Cooke put together were trying to figure out ways of assisting kids who were at risk because of their families' poverty as a way of minimizing or closing the achievement gap between them and kids of a middle- and upper-class background. The theory was that, if you gave 'at risk' populations a head start in life, they could do much better in the long run. It was found that this start really needs to be early on. It's a great program, and underfunded (we're too busy sending the AIG execs on junkets and paying big holiday bonuses to now-bankrupt companies that are running our 401ks into the ground to care about investing in silly things like the future human capital of our can only hope that priorities change soon, though to be sure Obama inherits a nightmare wrapped in a really bad dream where this is concerned). But where this concerns Hallie is that 10% of all slots are reserved for children who have special needs, and so this is where the EI folks want to begin to think about placing her. Now, we're pretty middle class (though it does not often feel like it; clearly, even though we live paycheck-to-paycheck in a fairly serious way, both Sharon and I have a lot of education and we provide Hallie with a lot of early learning tools as a result of this, and she is thriving because of this). Anyway, there are a lot of other middle class people around us. And a lot of private pre-schools. Not a lot of Head Start ones, though. We're not particularly a neighborhood at risk. Which raises a serious question about where these schools are located, what their facilities are like, how well they are funded, do they have a sensory gym and the stuff she needs for stimulation, and how is their student-teacher ratio? Then let's add in questions like "can they keep our kid safe when she has an allergy to almost everything?" (not an incidental question when one considers that the conversation that I overheard today at the chi-chi natural food store with millions of gluten-free this and casein-free that's went as follows:

Mom of GFCF 9 year old: but that has gluten in it! He can't have that!
Cafe worker 1: it's just a little, and see, it's only on the outside!
Mom: We are not buying this.

(Kid has major tantrum. Mom drags him from store screaming)

Cafe worker 1: Can you believe that! It was just a little. I could have taken it off the top!
Cafe worker 2: Oh, he's just spoiled. It's just a little. How silly of her!

Clearly, they don't get it. And if they don't get it, will staff not educated in food allergies trying to keep a million kids under control really understand that, yeah, there's cow milk in cheese, and flour in cookies, and no it's not safe to serve her the same stuff as other kids and yes, you have to make sure that our oral-seeking-food-averse 3 year old does not eat those cheerios off of the floor? I am dubious, and that's when I'm being charitable. Plus, add onto this general fear the fact that the Head Start programs don't have school nurses or anything like that, and cannot and will not administer medication to a child who is on medication, and we end up with a bit of a problem. The only program for pre-school children with special needs that is not part of a respite home/hospital for long term pediatric patients in the city that does have a medical staff is for children with needs far more special than Hallie's.

But if we opt out of this, what do we do about services like speech and feeding and OT and self help that Hallie really does need? What do we do about socialization? We might be able to go somewhere for the former, but what about the latter? We're already quietly encountering the fact that other parents of 2.5 year olds don't exactly think it's appropriate for Hallie to be part of their toddler's daily play experiences because, well, you know...she isn't reallyfunctioning at the same level as they are, and what, exactly might they learnfrom her (the great fear being gagging, coughing and too much television watching).

So, ultimately, I have no answers. Just a nagging sense that we're not going to solve the eating issues any time soon, and perhaps never at all, and a sense that I cannot put my baby into a place where I worry about her safety, yet simultaneously a fear that if we do nothing to help her adjust, things will or at least could be so much worse for her when she does start grade school (which pretty much over our dead bodies, and even then I think we'll write this into our wills, will NOT be any time before she is seven years old. Kindergarten can wait until she's six, and first grade will wait until she's seven. That should give AIG enough time to spend down the rest of my retirement account and perhaps her paltry 529, too, and if I have to work forever, well, I already have to do that, and grading a few more papers with run on sentences (not like these lovely things I write!) won't kill me (most likely). But even though I know these things, I don't know what awaits my little girl in the future--immediate and long-term--and I don't know how to control things so that her life is easier and happier. Those of you who know Hallie in person know that she's incredibly sweet, amazingly bright, and totally curious. I want others to see these things, too, and I want others to want to protect her and ease her way as much as I do. And that's what I can't make happen (I also cannot wave a magic wand and make her tummy and GI and immune system better, and I cannot erase the scars that lace across her tummy, and I cannot make her voice more assertive....sometimes it feels like, even though I love her like I do, I cannot provide the things I want to for her, and that just makes things all the worse on nights like tonight).


Anne said...

I really wish we did have that magic wand (although I would likely first use it to put some of the parents of the "typical" kids I know into our shoes for just one day). I also don't think any of these doctors has the magic wand and wouldn't it be refreshing if they just admitted that?

Eliza's special educator asked me this week what my main goal for Eliza was in the next year. It wasn't some lofty goal of being able to count to 100 in three languages. It was the simple goal of having her be able to play and communicate with her peers, even on a basic level. And as I was saying this to her, I think my heart broke just a little because the reality is Eliza may not achieve this simple goal of being able to play with another toddler.

Even without a magic wand though we can try our best to create the optimum environment for our children and keep them safe from the unkind people of this world (at least for a little longer). And we can also consider that commune on Saba.

Anonymous said...

wow that is quite a post. I think the worst thing about all of this is that you are being left to work things out on your own, with little help from "the system." One thing is certain, though: you are Hallie's determined, resourceful advocate, and she will get the best care there is, because you will find it for her. It is a very daunting task though, when no one seems to want to help. I would try to offer assvice but I think you have probably already thought of everything, and are already doing everything you can.

Anonymous said...

i just wanted to add that Hallie IS going to be ok. Her socialization and nutrition may not happen the way it does for most kids, but it WILL happen.

Suzanne said...

My kids don't have eating problems or allergies, and none were premature and none had special needs of any sort, but we, as a family decided that the environment in which our kids were being raised was not what we wanted for our young family. We are well educated, university degreed, professional middle class people who lived in a nice house in a good neighbourhood in Ireland. So we moved - we moved to Switzerland. We now live in Zurich. And do you know what - once we got over the initial teething difficulties, we realise the enormity of what we have done. It's fantastic. Everything is fantastic. Our eldest, at age 5, was walking to and from kindergarten without an adult. It is expected. Parents are discouraged from bringing their children to school. Children are expected to be independent. And the health care in Switzerland is second to none. It's expensive enough for an adult, but for a child we pay 85 chf (about 80 usd) per month, and our kids are covered. And the health care system is child friendly. Their aim is to have happy, healthy children. I have yet to come across any parent who has had a problem with the health system in this country and we have been here for 3 years. Of course there is the option of private pre-school (for children up to age 4, at which age they must attend kindergarten) but the private pre-schools are great. I distinctly remember a note on the door of one school stating children were not permitted to bring snacks with nuts to school because one child in the school had a nut alleregy. And I accept that your feeding problems extend way beyond the realms of a peanut, but what I am trying to say in this comment, is that perhaps America is not the best place in which to raise a child. There are other countries in the world that are better, and if your children are the main focus in your house then perhaps it is worth the upheaval of moving to a country with a better system. Zurich is the number 1 city in the world in which to live and Geneva is 2nd best. The swiss must be doing something right to achieve this accolade. I have many friends from America who moved to Switzerland for the purpose of getting out of America. And here they stay. Some integrate into swiss life by learning German and sending the kids through the local school system, others keep to the expat way of life by speaking English and using the International schools. Obviously I do not expect you to up and leave your roots on the basis of what I am saying but it is food for thought.

Meg Weaver said...

Do you have some other parents to talk to about the EE or EGE issues? If not, I know a couple of lovely mom's who are happy to talk to folks about this and I'd be happy to get you in touch with them. Be assured that you are not the only one of them who has had to fight to get a diagnosis and treatment for your child.

Anonymous said...

I feel you in your post, and I live in Philadelphia. Neither of my kids are preemies but one has severe food allergies and the other has ADHD and developmental delays. I have been the private preschool route. My ADHD guy has been asked to leave 2 private schools now. I am now on the waiting list for Head Start. I found that they are extremely interested in getting my boys the support they need. Before we get accepted we will meet with a special needs coordinator and a nutritionist. They have to be able to feed my food allergy guy and will go out of their way to make sure school is safe. The special needs coordinator will help establish goals for my ADHD/delayed son and there will be an aid for part of the day in the classroom. I wanted to weep for this is much more than I have gotten so far. If you are part of Elwyn the therapist can come to the classroom to do the therapy.
Good Luck on the decision. I remember thinking the same things about stray foods when sending my food allergic kid to school. He is now 3.5 years old and is starting to know what makes him sick and will avoid foods he knows are dangerous. I wanted to sit in front of his school with an epi pen on his first day (he has anaphlatic allergies) It has been great and the school does alot to accommodate him. Good Luck with your decision.

Katie said...

I just came across your journal from Dakota's... I don't even know if this will be helpful, but National Jewish Hospital in Colorado is a wonderful hospital for allergies, autoimmune and respiratory issues. When my parents got fed up with the hospitals in Seattle for continually misdiagnosing my sister, they went there and what a difference it made! Lots of the kids there had allergies where they were only able to eat 3 or 4 foods.

Also, it amazes me how little options there are for young children with special needs. I actually work in a preschool (in upstate NY) for children with special needs who are integrated with their "typical" peers. We have kids with a broad range of disabilities and all of their therapies are integrated in their half day or full day program.

Sara said...

Wow. I don't even really have any words of wisdom (because you KNOW where I am in my life right now...) But wow. I'm here if you need to talk. You've been such a great support to me these last few months, it's the least I can do. I won't say hang in there, because I just freakin' hate when people say that. I will say that Hallie is so lucky to have Mommies like you and Sharon. Lucky, lucky Hallie.

Mom of 24 weeker said...

What a post! I just had to comment... I am concerned that my daughter has a receptive language disorder and have investigated many speech options. Have you come across the Phebe Anna Thorne School at Bryn Mawr College? They have a Language Enrichment Program (contact Nancy Rassiga) specifcially for speech-delayed children. I am in the process of determining if it will meet my daughter's needs and if she is a good fit for the program. My SLP from EI is going to tour the school with me next month. It may be something to look into.

Also, I hired an educational advocate to help ensure that my daughter gets the services I feel she needs. I am most concerned that we find what Anne talked about, that perfect fit.

It's not easy but there are options out there and if your local Head Start or IU is NOT getting Hallie what she deserves and needs, I say fight, fight, fight!

Mom of 24 weeker said...

Sorry, how could I forget????

CONGRATS on 28 weeks!!! I'm pulling for your family!

Mother in Maine said...

Hi, I am the mother of an 11-year-old daughter with significant reflux she never outgrew, as well as delayed gastric emptying, chronic constipation and asthma.

I just wanted to pass along that my daughter tested positive for EE when she was scoped in Maine three years ago. She was put on drugs for EE but did not get better.

We wound up at Boston Children's Hospital, where she was immediately put on Nexium and taken off the EE medicine. After additional tests, we discovered she had had a high eosinophil count in her esophagaus because of the acid from her reflux. Once that was calmed by the Nexium, the count went down and her vomiting and food intolerance significantly improved. I am wondering if your daughter has had any tests that monitor the acid content in her esophagus. Our daughter did in an overnight test at Boston Children's. She also was scoped there. The acid monitoring tells the doctors when the reflux is flaring up over a 24-hour period.

Our daughter also takes erythromiacin (sp) instead of reglan because our pediatric gi believes there are fewer side effects.

Our daughter has done quite well on goat's milk, like your daughter. She also does quite well on smoothies I make that include yoghurt, a rice-based protein powder and blended frozen fruit that includes peaches, bananas and sometimes mangoes.

I hope sharing our experience helps and I wish you the best of luck.

Kara said...

In don't know about Pennsylvania, but in Texas, there are two versions of public 3-5 education -- Head Start (for economically disadvantaged kids and kids who don't speak English) and the Preschool Program for Children with Disabilities, or PPCD. PPCD, which is the federally funded-ECI extenstion, is for children with disabilities and developmental delays and has no relationship to income. I had heard it hinted at, and then really learned just by calling our school district and spending time talking to the coordinator of the program. They have SLPs and OTs in the classroom as part of the daily teaching staff.

AuntLaura said...

Hi guys!
I just read your post(yes, the whole thing!!! LOL!!!) I am more convinced than ever that you need an advocate or at the very least a social worker to coordinate all the docs, school, etc... Your pain in evident in every word you type. Clearly Hallie cannot go on with the current plan of action. I would love to see the docs feed their children (or themselves) a diet of nothing but goat milk, apples, pear, and potatoes...see how long they would last before begging for some help. I am going to speak to Mary Ellen and see if she will talk to her sister-in-law (advocate in Lansdale). I feel like I need to do something for Hallie, but I am powerless to do for her what really needs to be done. I can't even imagine what you have felt every day of her life. I do know that Hallie is a lucky little girl to have such loving, compassionate, and tenacious moms. She wouldn't be where she is today without you. Forge ahead...there is no other option.
Love you much,

23wktwinsmommy said...


In Massacusetts, S&E EI program will alert the special ed department that S&E are involved and likely to need Special ed. S&E will be tested at 2 years 10 months by the SPED dept. They will enroll them in a half day Worcester public school Pre-K that will meet their needs (i.e. if Edwin still uses the walker he will attend a Pre-K that is 100% handicap accessible...ramps, elevators, etc.) They will go to school on the 3rd birthday and will be in an inclusion class with "typically" developing 3 and 4 year olds, and special needs 3 and 4 year olds. We will have an IEP written after the test results and before their 3rd birthday. The public school system takes over and provides PT, OT, ST, as needed during school hours. They will also provide a one-on-one aid if needed. We may even be eligible for summer school if necessary, to keep the routine and the social interaction consistent.

I took for granted that other states would not offer this? What are kiddos like ours suppose to do without this system??? The same issue I'm having with respect to child care. I don't think we can afford a personal nanny, and I'd love the daycare experience in terms of socialization, however am scared of the germs. But a specialized daycare that modeles out SPED Pre-K program would be ideal. (See my post for more ranting/stress on this issue.)

Best of luck, and hopefully EI can help transition Hallie to the best possible program.

Sarah said...
This comment has been removed by the author.
Sarah said...

Well, first of all, I'm totally with Anne. I vote for Saba.

I mentioned before the digestive enzymes. What Hallie has sounds so much like my friend it's fascinating. She will regularly 'lose a food' as well and she is 32 years of age. Have you considered putting Hallie on the elemental diet so that she can receive all of her nutrition and then the foods she does eat would be 'benefits?'

As far as Hallie speaking - well, obviously I'm just entering this field as Emery is younger than Hallie. What our district has to offer is a special needs/medically fragile preschool for kids, which will help with his Emery's medical needs, and as a bonus they teach ASD kids, sensory kids, and nonverbal children as well. That's what our EI does to transition kids from EI into the school spectrum, and for some odd reason I consider myself lucky this option exists.

Obviously, I have very little to contribute. I do understand, though, and just wanted to send a hug.

Congrats on 29 weeks!