I could use some advice...

[FMmom]

So this isn't exactly about FM, but it's kind of, sort of, is...

I got the results from Kaelin's developmental testing on Monday -- and I'm just devastated...

When I first met with the psychologist, I told her that Kaelin fits the profile for the girls version of Asperger's, but she also seems like she could be ADHD and she's very anxious all the time. I also explained about all the food issues that she's had and how a change in diet has made such a dramatic difference in her life.

Kaelin went in for testing and the psychologist said that Kaelin was eager to please and she tried body and soul to complete all the tasks of the test. And she said that she understands why I suspected all of these conditions: Kaelin is on the fringe of all of them. (Just like her all of her medical stuff -- could be any number of things, but nothing definitive...)

Before adopting Kaelin, we had her evaluated for Fetal Alcohol Syndrome and had her evaluated twice more after coming home (once as a two-year old and again at seven.) The psychologist also agrees that Kaelin does not have FAS, however, probably has the lesser issue of Fetal Alcohol Effects. That, coupled with no stimulation in the orphanage and then being unknowingly deprived on nutrients for so many years (dagger in my heart!!!!) has led to some definite cognitive impairments.

Kaelin has Executive Function Disorder -- I've read about this before, but I though it was some catchall type of disorder when the psychologist doesn't know exactly what is going on (the brain version of IBS) But I guess it's a real thing and it means that Kaelin cannot coordinate her thoughts. It was described as her thoughts are like every instrument in the orchestra playing at once, but she is missing the conductor that pulls the music together.

In addition, she has an anxiety disorder and her receptive language skills (the ability to understand what is being said to her) are years behind where they should be...

For the last few days, I've been thinking so much about school and how difficult it's going to be moving to the huge Middle School in two weeks -- and how hard it is to make friends.

But it occured to me this morning that this must be having a huge impact of following the proper diet as well... She has little to no working memory. So she doesn't learn to avoid foods that hurt -- sugar hurts today, but tomorrow she'll have to learn that all over again. Her receptive language skills are behind, so she may not even understand what we've been telling her about various conditions and the need for medication. And even when she does understand it, she's not coordinating the knowledge with the appropriate action.

I've been so very frustrated with having to be completely in charge. She needs to take Lactaid -- she burps and passes gas and her stomach hurts like mad -- and yet even though the pills are right there on the table in front of her, if I don't get them out, put them in front of her, and demand that she take them, she won't do it. It means that when I'm not with her, she makes terrible choices like eating a lollipop or not taking her Creon for three entire days at science camp. At a minimum, it is a relief to know that this hasn't been willful...

I think I need to start completely over. How did you teach your young kids about the "right" and "wrong" foods? Did they just learn it over time because of the pain or did you take specific steps to teach them? How did you tell them that they have FM or HFI or whatever?

I'm not even sure what I'm asking for -- I just have to somehow make this real for Kaelin in a way I haven't managed to thus far. Honestly, it's the least of my concerns at the moment -- I'm a lot more worried about her new school and how much she struggles with friendships. But lunch and medication is going to impact her day and the teachers will be much less involved.

So any words of wisdom will be greatly appreciated...

[Charlie Arnold]

I think you have hit the nail on the head here Fmmom, the working memory with some of these kids is the problem. Meg has very poor short term memory and is possibly tied in with low blood sugar problems but also maybe Autistic Spectrum Disorder and Specific Learning Difficulties. I so wish I could ship my family link worker over to you but she is stretched enough here.

I thought I could cope and was doing well but her simple ideas of charts, rewards, positive thinking and strategies have so helped over the past few months.

One major problem with these illnesses is that the hit is rarely instant, it occurs over several days, so they do not equate how they feel with what just went into their mouths unlike anaphylactic shock. So we have to start educating them bit by bit. Now when Meg is obviously feeling poorly or reacting she starts getting irritable, she doesn't want to leave the house and farts big time. I now say to her to think what she ate the last few days that was wrong and that this is the result, it isn't pleasant is it and it wouldn't happen if she avoided the food. I'm trying to slowly imprint it in her brain. Whether it will work, I don't know, its going to create major moods and rows but it has to be done and gradually it may hit home.

But stress can also play a part so you have to tread carefully, have you looked into abdominal migraines as a possibility for some of the pain? Also under abdominal epilepsy, it was suggested as a possibility for Meg last year and not been followed up.

As for other things, I read a fantastic book last year by a Dr Robert Pauc, he is based in the New Forest here in England is a Chiropractor and has studied extensively kids with learning and behavioural problems. He equates alot with birth problems and what happens is the communication systems in the brain don't quite connect properly so co-ordination and working memory etc don't quite work. He so made sense, I just haven't got round to seeing him yet because of the cost and also wanted to clear the medical side first but he is on my list to try and it maybe worth emailing him for ideas, I know he does skype and sometimes comes over to the states. Basically he works on a series of exercise to retune the brain. I'll edit with his link just incase it is of interest. Worth maybe approaching from a different angle.

tinsleyhouseclinic.co.uk/

In the meantime, my kitchen is festooned with charts and stick=its. These kids with ASD / Aspergers/ Anxieties, whatever, all cope better with clear quiet boundaries, clear concise routines, positive praise and a big walk away the minute a row starts.

I used to get locked into battle with Meg when she got stressed and started tantrums, now I just walk away, go into a different room, wipe the kitchen surfaces, load the car, anything other than engage in Megs tantrum.
It took alot of self control, alot of patience but one day it clicked.

She was throwing her usual tantrum about the socks not being right, the clothes weren't in the right order, she didn't want to go to school etc etc etc. She was in the front room so I went into the kitchen, stacked the dishes, loaded the car, went back through the sitting room upstairs to the loo and then when I came back through she stopped, looked at me and said "are you listening to what I am saying".
I said " no, you're whining!"
"Fine then she snaps and stomped out to the car".
I left it a few minutes while I tried to stop laughing and then followed her out - couldn't have been in a nicer mood.

I thought Meg at nine would be too old for charts etc, but they do help two ways, they are starting to help her train herself what she needs to do each day, what to pack etc. But the food chart shows her what we are eating each day and the week planner lets her know where we are and when. But also, because half the time I am totally knackered and stressed up to the eyeballs by all of this it helps me be more focused and organised for her too. A good site for ideas is

www.sparklebox.co.uk


I'll edit this with that chaps website. Worth a look into, especially if there were brain problems at birth. I know someone who took her ADHD son to him and he transformed him.

[FMmom]

Charlie -- thanks for your response. I had no idea that Meg had some of the same issues. And thanks for the links. We have something similar to Tinsley House and I've looked into it, but the program costs about $3,000 and they have so many disclaimers about why it may not work for your kid that I wouldn't even consider doing it.

At Kaelin's school, they did a program called "Brain Gym" and I did some of the exercises at home -- but it's always hard getting Kaelin to participate in anything. She gets so easily distracted. She'll do one movement, then notice the cat and dash off. Ugh. I'm not sure I'm doing anything to relieve anxiety if I have to yell and/or punish to make her participate!

I know that my original post seemed a bit melodramatic (hey, I was an English major -- I have a flair for the dramatic!) It wasn't the diagnosis that had me devastated; it was the absense of one. I really thought that she had Asperger's and that not having real friends wouldn't bother her. But Asperger's isn't the problem so she's totally aware that she's awkward. She told the pyschologist that sometimes her friends "duck down when they see me so that they don't have to play with me." It just breaks my heart. Because of her Executive Function Disorder and receptive language deficiencies, she has a hard time understanding what the kids are saying so she can't keep up in a conversation. And then add in an anxiety disorder... Sigh.

I've tried so many different things to get her organized. Like this hanging bin for her closet, where we can put five outfits for school, each day in a seperate cubby. The first day of school was fine, but the following day the bin was empty and after much tears and racing around and coming up with a new outfit, we finally found the skirt in the my office upstairs and her shirt in the downstairs bathroom. Don't ask me how any of that happened. It's maddening, absolutely maddening!

So what does this have to do with FM? She can't clearly communicate with me what foods bother her stomach; partly because she doesn't make the connection to food and pain, partly because she gets confused when I ask her questions. Her pediatrician thinks it's a good idea to let her buy school lunches because all the kids do -- it will help her fit in with the other girls. But despite going over the menu at home and picking out the most appropriate food, she either doesn't remember or doesn't care what we discussed and gets something awful. (However, it may just be that there isn't ANY appropriate food -- every afternoon she comes home just a hyper, nervous wreck of a kid.)

The balance that I am supposed to achieve is like walking a high-wire act. The social piece, the pain piece, the weight gain piece... Let her buy school lunches so she fits in with the other kids. Let her eat foods that help her gain weight. Don't let her become too hyper or distracted because then she won't eat enough. Try to reduce the stomach pain so that she will want to eat more... I cannot balance all those things -- and I'm flying blind because Kaelin can't/won/t tell me some of the things I need to know.

grumblegrumblegrumblegrumble...