Yearly update, lol

[annedefiance]

Hi folks, looks like it's time for an update. It's just been hard to get in like I want anymore. Heck, between work, school, kids, and hubby, it's hard to get to the bathroom anymore, lol. Let me intro myself real quick for all the new folks. I'm Anne, married mom of two in Ohio. Bobby is my older son, he's non-bpi, he's going to be ten (I can't believe it!) on July 1st. Ben is our younger son, he just turned 6 last week and is ROBPI. He's had nerve grafting (6 months) and Mod-Quad (15 months) both at TCH. He had a gracilis transfer for his bicep (3 yrs) and Anterior Caps (almost 5 yrs) at Cincinnati Children's.
Ben is doing great BPI-wise He's pretty well plateaued, but he hasn't lost anything, lol. He has to go back to Cincinnatti in June (I have to schedule it yet) for his check up since last year. I'm not sure what they'll say other than he still has no supination and his hand is still limited. But he has some really good elbow function. Never have regretted the gracilis transfer There has been some new things popping up tho...we noticed about a year or so ago, his right eye (OBPI side) is still blue while his left side (non affected) is a hazel colored...kinda cool if you ask me, lol. It's due to his Horner's from what I understand. Also, his right ear is shaped differently than the left. I guess this is just stuff mom and dad notice, lol. He's getting ready to go into kindergarten next year, they're doing his testing differently since he's a special needs kiddo. One thing I'm wondering if y'all can help me with...they want to test him for ADD/ADHD, but I've been reading thru posts and wonder if he doesn't have a form of SID. Reading some of the info posted on here and other sites about it say that there is a type that the kiddo's need more sensory input because of stimuli probs. Ben is VERY active, and extremely impulsive..which go with ADD/ADHD I know, but can it be SID I wonder? Anybody heard anything about that? I just don't know that much about it...guess I need to do more research.
I guess it's just one more thing..hubby became disabled over the course of the past two years and we're finally finding a medication that may help him. It sounds strange, but he has a certain type of headache. It's a constant thing with flare ups that take him out. It's called "Hemicranial Contiua" or something like that. It's a rare condition, but it may be controllable...he's just started with a specialist *fingers crossed* Bobby is still doing great...other than "terminal mouth disease"....ya know, the one that is also known as "if that smart a** kid opens his mouth again, I'm gonna kill him!" LOL! Gotta love 'em! I'm still in school and started working at our local battered women's shelter at the end of January...it's an interesting job and I'm enjoying it.
Anyhow, that's pretty much our update..hope I didn't bore y'all! I try and pop in to read posts..even if I don't reply or post much myself.
Hugs to all
Anne

[parent needing help]

Hi Anne

Good to hear from you again and good to hear Ben is doing well. I too don't get on much and for confidentiality reasons have to post with a weird name and all that good crap that goes with it. Ask Allison about a brushing program to do this summer and see if that helps calm him down a bit, it helped in our household quite abit. You may be more on the money with SID, which is what we have here too. Kindergarten went fairly well, we made it w/o a "plan" and it has been so so ok. If you can take this summer to work on the SID issues and see if they help him that would be a big step in telling his teacher(s) what works for him. We learned the hard way. No overhead moving objects within her peripheral vision, fans, kids that talk a bit (even though she whispers to himself all the time, walking through the work). The other kids didn't notice too much about her not tying his own shoes, they all liked the little sweat/sport pants this year so the button / zip wasn't a big issue. Don't count on the school providing all the therapies he still needs, we still have to do outside therapies. I am confused on that though, we use the same therapist the school system does and she doesn't think we need in school but we need to come in once a week for outpatient. Go figure. Whatever it takes is the motto around here.

It's funny you mention the eye and ear thing. Her eyes are a different shade of blue but also shaped differently. And the audiologist told us that his ear CANAL was affected, being smaller and shaped narrowly on the affected side, which she has seen before in a couple of other BPI patients. Says it changes the way the air waves move in that side.

Do you guys have trouble with swelling in the heat? Not that we are in sunny FLA, huh? But still, it is hitting 80 in the afternoon here this week and we already see some slight swelling and yesterday they had a DM walk at school. Never thought a thing about it, SUNBURN on the affected side with a 20 minute early morning walk! We are on spring break but I will be writing the letter today for the backpack with a bottle of sunsceen. Not sure what good it will do me but there are a couple of other teachers that are wonderful so they may check on it for me.

We are looking at the radial osteotomy this late summer, not much suppination / pronation movement at all, and certainly wish the elbow function was better. Awesome should movement now though. I dread starting the surgery ciruit again but these next 2 or 3 should do it for a few more years. I balked so bad when Mehlman (sp?) suggested this surgery a couple of years ago but after 3 opinions being the same I guess it is time to face the fact that we are at the last resort time. I doubt that we will do it with him though, we love Allison (OT) but could drop him off somewhere in a bucket. Just personality differences I supposse.

Anyway, good to hear from you, I wonder about Ben often. Hope all goes well.

just another BPI parent

PS: Gang girl I know what you mean about the bathroom! We are so busy here we have to take Kaopectate some days "cause we don't have time to potty! LOL

[parent needing help]

And if I could spell today it would be easier to read! Sorry about the numerous typos.

[Carolyn J]

Anne,
Please read ALL threads on SID please!! It makes alot of sense when you read EVERYTHING...Take it from me,Kath & others...Have him tested for SID and print out ALL of the posts & take them with you to the SID testing.It IS NOT ADD/ADHD & don't let anyone tell you it is!
I am very glad to "meet" you.
Hugs,
Carolyn J
Adult LOBPI

[brandonsmom]

I read an article that states that ADD/ADHD is being misdiagnosed. They are diagnosing SID children with it when it is actually Sensory Intergration Dysfuction ! Gayle

[mlynn]

a good book to read is "sid, how to deal with the out of sync child"

[annedefiance]

Ok, let's see if I can reply to everyone, lol.

parent needing help- I'll talk to Allison about the brushing when we go June 6th for his next checkup. We notice the sunburn thing on the right side, I've never noticed swelling, but then he's always a little more swollen in his right arm. I'm not sure if we'll be looking at an ostetomy or not, Ben doesn't have much by way of supination or pronation either. Dr. Yakaboff will be at his check up to look over his wrist and hand and see what's up there. Good luck with the surgery for you all, keep us updated...as much as you can

Carolyn- Nice to meet you as well I have read the posts and they were very helpful. I did some things that fit me in there as well...but then again, that could just mean I'm "quirky" LOL! A couple of them Ben and I have in common tho.

brandonsmom- Allison at Cinci Children's told me the same thing. So we're pushing to have him tested

mlynn- got the book coming from amazon.com, lol

Ok, I got everyone Well, the more I've read on SPD (SID) the more I want Ben tested, just to be sure. I broached the subject to his pre-k teacher who immediately pooh-pooh'ed the idea, but I told her that there is more than one type and Ben fits with those who are under-sensitive in some ways and over sensitive in others. He's always been a child who doesn't transition well in certain situations and now he's started with the not being able to make up his mind which to me equals overload. Anyhow, I contacted his OT at our local hospital who's going to contact the OT at the children's hospital in Toledo to see what she can tell her about it and maybe she'll come down to test Ben, if not, I'll happily take him up there. Allison agreed that we needed to have him tested outside of the school OT. I don't have anything against her, she's very good at what she does, but I'm more afraid of bias. Plus she's been working with Ben since he started there 3 yrs ago and she probably sees him as ADD/ADHD....that's just my opinion tho. When his teacher said that the OT could test him, I said she was more than welcome to, but we were going to have him tested by an OT not affiliated with the school. So, now I need to research and all that fun stuff and somewhere in here write three papers and take two finals. I will keep you all updated as I find out more Speaking of updates, after this semester ends and before summer session starts, I'll update his site and repost the link so y'all can see what a little booger he is Thanks for the support, I do appreciate it

[admin]

AnneDefiance... You are an inspiration

[m&mmom]

Anne,
I have been wondering about Melanie and the SID. The whole add/adhd thing has not come up in school (thank goodness because I'm on the fence about the whole topic) but you would swear she has it at home. Her bpi is recovered but a lot of the stuff from SID makes sense if I relate it to how she acts. I'm going to have to look into it.

Cindy

[annedefiance]

Hi all
Well, Ben was evaluated Tuesday morning by the OT in Toledo and she said she didn't see him as having SID or ADD/ADHD (not that she was testing him for that, just a side note, lol). She said that his problems at school were probably more related to boredom (told the teacher that back in the fall, but apparently I'm full of chit). DH and I were talking on the way home about it and we wonder if he just seems worse to us because out older son was/is so laid back. She gave us a few ideas for his bigger quirks to try and we'll do that. I'll tell his teacher Friday at the IEP meeting and see what she says.....
Well, I'll request a copy of his records from this and show it to the docs in Cinci. I'm still going to read up on SID and just pay attention to my son. Right now I got to put effort into class starting next week and going to Cinci in the beginning of June *sigh*
OH! I still haven't updated his website (I know, bad Anne, bad, bad Anne! LOL!) I will get to it this summer and let y'all know when it's done.
Talk to y'all soon!

p.s. Cindy, I didn't get your email. If you would, try again to bpimom@gmail.com