Thursday, January 12, 2006

New Hope

We saw a new occupational therapist on Tuesday. The company she works for, called PS Kids, was recommended to me by a parent in Isaac's playgroup. They aren't in-network on our new insurance, of course, so we'll have to pay total cost until we exhaust our $1,000 out-of-network deductible, and even after that, we'll still be stuck with 50% of each bill.

But after weeks of searching, I haven't been able to find ANY pediatric occupational therapists who:

1.) Are willing to work with children under the age of five

2.) Are willing to work with severely underweight children with feeding disorders who are under the age of five

3.) Have any openings for new patients before next December


4.) Actually take our insurance.

Aside from the Cardinal Glennon Feeding Team, of course (*grumble* *mutter* *curse*).

So I'm kinda at the end of my rope with this finding a specialist who takes our insurance thing.

Anyway, when I called PS Kids, I found out they give discounts and offer payment plans for people whose insurance won't cover the service, AND they make housecalls.

So I decided to make an evaluation appointment.

And guess what? Just as I have suspected for months, the therapist from PS Kids thinks that the cause of Isaac's eating problems is, in fact, most likely Sensory Integration Disorder.

The fact that, after months of testing and testing and researching, someone has finally given us a specific diagnosis that makes sense is remarkable enough to start me doing a happy dance in and of itself.

But I found myself even more impressed, and relieved, by what this woman didn't say.

She didn't say, for example, that Isaac, my sweet, mostly-well-behaved, polite little boy, has been starving himself since the age of eight months because he "lacks discipline" and has a "manipulative personality."

She didn't tell me it was all my fault that he didn't like solid food because I'd nursed him "too long" and made him too attached to breastfeeding.

She didn't tell us we could fix him through strict punishment by scolding him fiercely or locking him in his room if he threw a single piece of pasta off the dinner table (mind you, he's less than two), or by witholding all food for the rest of the day if he refused to eat what we wanted him to.

She didn't tell us to stop giving him nutritional supplements and vitamins, cut out all food he's currently willing to eat, offering only food he dislikes-- to, in effect, starve him for days at a time until he was so ravenously hungry he'd be willing to try something new.

Nope, she didn't say any of those things, because she's not Barb the Draconian Dietician from the Cardinal Glennon Feeding Team.

Instead, she recommended intensive occupational therapy to desensitize him to various textures and help his confused nervous system reorganize itself. She gave us a list of theraputic activities to try, involving, among other things-- get this-- just as I imagined in a previous entry--


(Maybe I should be an occupational therapist).

And Isaac seems to like her a lot, to boot.

My fingers are crossed . . .


Andrea said...

A light at the end of the tunnel! Wonderful! I hope this works out for you in the way that you hope and Isaac starts gaining weight soon. Manipulative, my arse. Barb the Draconian Dietician is the manipulative one.

BTW, this may be a dumb question, but how do you insert hyperlinks to the text of your posts? Such as the PS Kids link attached to the words PS Kids in your post? I'm not completely computer illiterate, but I know NOTHING about code or programming. I'm lucky Little Bald Doctors has turned out as well as it has with messing around a little with placement of things.

Andrea said...

Oh my word! I just read your Starvation Team post, and I'm about to cry! What a sad, pathetic excuse of a professional health care expert that evil woman is! I nearly cried when you described Isaac's face when he realized he wouldn't eat what was being served again. I hope with all my hope that this new thing with PS Kids works for you, and that Barb the Nazi Concentration Camp Diet Guru is exposed for the incompetent hag she is. And Jenifer needs to find out about a spine regeneration program to replace the one she's been without since working for Barb. Hang in there. It's clear you know your child best and while you aren't a medical expert, I truly believe that your instincts are sharp and from this experience, you will now know what to take and not take from those people who think they know it all because they have M.D. behind their names. Hang in there.

Jaelithe said...
This comment has been removed by a blog administrator.
Gina said...

wonderful, I'm so happy that group is working out for you. I hope next time we see you guys there is more good news!

Jaelithe said...
This comment has been removed by a blog administrator.
Jaelithe said...

In response to Andrea's comment re: hypertext-- Blogger actually makes it incredibly easy to add links to your blog text, without even doing any HTML yourself, once you figure it out. When you're writing a post in the Blogger editor, all you have to do is highlight the text you want to use as your link anchor. Then look for a little button at the top of the editor that shows a globe with two chain links in front of it. When you push the button, a little window will pop up which prompts you for a web address. Enter the address you want to link to (be sure to include the http:// part), and voila-- link.

It took me a couple of weeks of using Blogger myself before I discovered this feature *laugh* I guess I just wasn't looking at the buttons closely enough.

Let me know if you'd also like to know the actual html code!

Jaelithe said...

Wow sorry for the multiple self-deleted comments everyone. Blogger is kicking my butt today hehe.

Shout out to Gina-- she's the one who found PS kids for me :)

Andrea said...

Thanks for the tip on the links! I guess I never looked beyond the picture button. :)


Lisa said...

I wanted to check out your site. Thanks for checking mine. My little man was diagnosed with SI disorder. Is your little man under the age of 3? If he is, he can quality for First Steps. Are you familiar with First Steps? Seth went through the program last year and we used a speech therapist twice a week and an occupational therapist once a week for quite awhile. We didn't have to pay anything and both therapists did a TREMENDOUS job! First Steps is through the State of Missouri.

Seth is a completely different child now. He had alot of sleep issues and he's still very sensitive to sounds, temperatures, tastes. (And he's a skinny little thing still.) But if you are interested I can talk with you more via e-mail for phone.

Am going to check the rest of your site out now. At times, during the therapy it was very difficult. They likened it to cleaning out a closet -- it looks like a bigger mess as you start cleaning butonce its is finished you are very happy. And that was definitely it. We have a happy little boy now and every day I think of Sheree and Monica (his therapists) and how much of a HUGE difference they've made in our home.

Lisa said...

I've been reading more of your posts and have to say your little man sounds alot like mine when he was that age. Seth is very gentle and tender but he had very little attention span, would eat only about 4 foods, had probs sleeping, seemed unusually active and several times a day would have these horrible emotional breakdowns where he'd scream and scream and cry. By 2 he wasn't speaking. He'd say a word for a few days and we'd never hear it again. So I called his Parents As Teachers person. She directed me to First Steps. Other moms in our playgroup (who had boys) had some of the same problems. (NO one would talk about this until I brought it up and started talking about the therapy he was going through.) And out of four boys, three of them, at some point, had occupational therapy, while my son and another boy both had speech therapy as well.

I think they've changed FIrst Steps a bit in the past few months. (Gov. Blunt wanted to eliminate the program because he's a moron and didn't bother to do his homework regarding the program. But he found so much opposition that he didn't and now therapy is on a sliding scale -- depends on income levels. But we had a wonderful occupational therapist --Sheree Behrendt. Monica Burrows was Seth's speech therapist. They are both WONDERFUL, caring, talented women. They established a bond with Seth quickly. THey are from Sensory Solutions. (Sheree is one of the owners of the firm.) And I think now they have an office. But last year they would come to our house every week. I'm assuming they still do alot of work through First Steps but I'm guessing they do private work as well.

I don't know if any of this helps. But there is light at the end of the tunnel. There were so many days I felt so worn down physcially and emotionally from a screaming, overtired, fussy little person who would wake up 3-8 times a night.

And of course people kept telling me that all kids were like that and acting like I was a moron. I would talk to other women and they'd keep telling me that they were sure there wasn't a problem, and I got alot of stupid assvice on the eating and sleeping stuff. My hubby even accused me of looking for something to be wrong with Seth. My mother-in-law was the same way! And my mom kept saying, 'He's just perfect." (Insinuating that I was doing everything wrong.)

But I kept persevering and now my hubby, in-law's, and parents are happy I did so. They see the change in him. I am so happy I didn't listen to other people. The therapy has done a world of good for him. And alot of it was just doing a half hour of whatever needed to be done (we did alot of music therapy and swinging) each day. I'm glad I'm a SAHM because I had the time to devote to doing whatever I needed to do for the speech AND occupational stuff. I can't imagine working and trying to fit that stuff into a night routine.

And if they haven't told you yet, when there's some nice days out, put your little man in a swing and swing him for as long as he wants. Seth used to LOVE that. And it helps them find some "balance". He would be so delightful after a half hour or more of swinging.

But we also had a swing for inside and there were many a night he'd wake up screaming at 3 a.m. and nothing would calm him down but the swing. I'd swing him for at least an hour before he'd calm down.

Now he sleeps through the night and talks ALL OF THE TIME. He complains that things are "too loud" often and likes his bathwater lukewarm and won't eat ice cream until its melted. He also still has some touch issues at times. But now he's actually trying corn or green beans and french fries. (We are still working on a "pooping problem" where he holds it in but he's potty trained.) And he'll let me give him a hair cut. (Haircuts were a nightmare.)

When he turned 3 he was out of FIrst STeps but went through a plethora of test and it was decided he no longer needed any therapy so we were very happy.

Sheree said alot of kids with SI are really bright. They are just really sensitive to their environment. When I would explain SI to people they would look at my son as if he was "damaged" at times so I had to quickly explain how he was really far ahead in certain aspects.

Please keep me posted and let me know how all of this goes for you. I've been there and its tough but the work will be worth it in the end.

Jaelithe said...

Thanks, Lisa. It's really a change for me to hear from someone else who's gone through so much of the same stuff and come through to a better place.

The therapists I am working with now seem to think that under the current guidelines we would not qualify for First Steps, because our son is "not delayed enough."

So far the only things that are off-the-chart odd about Isaac are his trouble sleeping, his weird reactions to some noises, and his eating behavior (and subsequent poor wieght gain/stunted growth). His social and motor development are fairly normal for his age, and his language ability is actually advanced. The therapists we are working with say that in order to qualify for assistance through First Steps, our son would have to be showing at least a 50% developmental delay in speech or motor skills, which he isn't showing yet. And I hope, now that we have finally intervened with OT people who can help him out before his condition gets worse, he won't!

One would think starving yourself off the growth chart due to SI issues ought to be enough to qualify you as a serious case, but apparently not . . .

Still I ought to look into First Steps some more on my own. It may be that there are some options these therapists don't know about.

A secret which I have not yet revealed in-blog, but which I am planning to talk about in a future post, is that now that I have read a couple of books on it and spoken with a therapist, I am about 95% certain that I had SI as a toddler/young child. It never affected my eating preferences, but my mother recounts (and I remember) my having extremely odd reactions to certain noises, being terrified of certain kinds of motion, becoming overwhelmingly naseous in the presence of certain scents, and being almost unbelieveably annoyed by the feel of certain textures of cloth and by the seams in my clothing.

Of course, since this was over 20 years ago, before SI was well-know, and because my behavior wasn't immediately affecting my health, I never got any diagnosis or treatment. I just developed a very low self-esteem, because nearly everyone who witnessed my odd reactions to certain sensations thought I was a weird, over-sensitive crybaby, and I drove my parents absolutely insane, and felt terribly guilty for doing it.

I remember at the age of four one day trying to explain to my frustrated mother, "Mommy, I just FEEL everything harder than other people do."

But of course, she had no way of understanding why that explanation might actually be true.

Eventually, though, I grew out of most of the symptoms, and went on to lead a pretty normal life.

(I still can't stand the sound of scratching on cloth, though. Like a jackhammer combined with fingernails on blackboard. *shudder* But I just grit my teeth and don't say anything about it. Heh.)

The reason I bring this up in my response to you is, "really bright but just very sensitive to her environment" is EXACTLY the sort of child I was. And despite the troubles I dealt with as a young child, I wound up doing very well in school, scoring well above average on intelligence and standardized tests, going to an excellent college on scholarship, and pretty much being a successful adult, without ever getting treatment for SI, or even knowing that I'd had it!

So I have high hopes that my son will turn out even better than I did in the long run.

I just pray I can get him to eat enough now, in the meantime, to keep himself healthy! And that I can spare him a lot of the emotional turmoil I went through not understanding why I felt so different from everyone.

Dawn said...

I just popped over from Lisa's Site.

I am the Mom of Emily - age 7 - who is Sensory Integration defined. I too remember when we found out OT who asked me if Emily ate anything other than the "beige" diet? And I burst into tears, cause she was the first person to peg it for me. Em was diagnosed "Failure to Thrive" as an infant for her failure to gain weight.

She also never slept through the night ,and still doesn't at age 7.

But we have found modifications for her with the OT's help and she has regained some control for herself. It was never about "fixing" her, but helping her function in the world we live in.

I do wish the best for you in your journey. Have you see the "Out of Sync" child yet? Very helpful.