Developmental ped evaluation

[Anonymous]

Hi Thais,

Thank you so much for your reply. It’s been pretty stressful lately. Eating hasn’t been so great, and when I weighed her, I saw that she’s actually lost about a pound since her 2 year appointment. A lot has happened since then- weaning of night feeds, dropping of hypercaloric bottles down to regular, cutting down to one bottle only by removing am bottle (which I just did last week prior to weighing her). The sensory issues have been driving me insane- if a drop of something falls on her tray at dinner that’s mushy or whatever, just looking at it there upsets her and she starts getting really upset. Washing her has become near impossible, she can’t stand the feeling of water on her. When someone cuts their grass, or I use a blender or something, she goes bezerk. She doesn’t like kid rides at the amusement park, like most kids her age seem to… they’re REALLY tame. She seems chronically scared, in general, of things outside that are unfamiliar. She’s super clingy to me, often wanting to be held by me, no one else, not even dh. Yesterday she went nuts b/c he carried her upstairs instead of me. And then of course there’s the strange habit of wanting to play with hair, and her history of trichotillomania (hair pulling). It’s hard, b/c I don’t know if I’m overreacting, and I don’t want to have her labelled if she’s just an extreme of normal. I’ve always been shy growing up, and I don’t like new situations, and can remember hiding behind my mother’s leg. But then you throw in the reflux, the feeding problems, and the sleep issues and I start to wonder.

There aren’t too many developmental peds here, and the wait it A LONG time (about a year) so best to put her on now, if I’m thinking abou it.My friend got her child evaluated by a developmental ped and they told her ADD, and I really am surprised by that diagnosis, as is she. I guess I always worry b/c I’ve found that from the whole reflux thing- It doesn’t matter how well respected the doctor is or where they work, it matters what you think of them and how much you trust them and that’s been hard for me. I’m not sure why but I’m often skeptical, I guess when Hailey was smaller and they were throwing around all kinds of potential diagnoses that didn’t seem right to me.

About the supplements, thanks for the tip. Now if only I could find a way to get it into her… not so easy. But definitely worth a try. I’m not surprised if she has some kind of deficiency, especially due to the eating habits or lack thereof.

Yes, I’ve read the late talker and of course out-of-sync-child. I’ll need to think about the developmental ped, but will start the ball rolling. Here we kind of have a two-tiered medical system: we have free therapy like PT if you have private insurance, but it’s very limited, and OT and ST are not covered at all. They are really expensive- like $100 an hour.

My friend’s child has been evaluated by several respected speech therapists here and each one tells her something different. I know that Hailey wouldn’t even talk with a stranger watching, so I LOVE the idea of sending in a video and having someone evaluate her that way!!! Thanks for the tip!

I don’t really know what’s wrong with her speech. Most people can’t understand her. I find it hard, especially the more words that get added into sentences. Most of her sentences are between 4-7 words long, but good luck understanding them. Her speech just sounds garbled, almost like talking with marbles in her mouth, and she leaves the beginnings of of some words- for example “TOPPI SAWAH” is “stop it Sarah”. Today when I picked her up, she kept insistently trying to show me something. I had no idea what she was saying. It sounded like “Look- acuba, mummy. Acuba mummy.” It turned out that she was showing me “A School Bus”. When I put her in her chair for a snack she said “Iwa-eati-alup”. The intonation and pronunciation was so strange that it took me a long time to figure out “I want to eat it all up”. As I said, I’m not sure if this is normal or not, but I know that Sarah never spoke like that.

When you say that Matthew has “low tone”, do you also mean in his body, or just oral? How low is it? Can he run and sit? I’m asking b/c Hailey can climb and run and sit well, but seems to want to lie down a lot and when she runs, her whole body does this really funny looking sway from side to side.

Interesting that you mention facial features, b/c Hailey also had an unusually large head, and a huge forehead. Thing is that dh also has these features, so I’ve always attributed it to that. She was also born with an ear tag. I’ve never thought of taking her to a geneticist. One doc made a big deal of the ear tag now, saying that sometimes it’s associated with other issues. For Matthew- I really hope that things come back clear at the geneticist. I’m sure they will.

Anyhow, thanks for lending an ear…. It’s stressing me out lately trying to figure things out, and when I look at the big picture, there are so many variables to try to sort out (is it from the feeding problems, the reflux, the fact that we’ve introduced drinking milk lately, an underlying problem, the hearing problems early on, etc. etc.).

Good luck with baby number two. I’ll be thinking of you and hope that everything goes smoothly and easier. Keep us posted when you get a chance. BIG BIG hugs!

s&h’s mum2007-10-11 17:13:59

[Anonymous]

No problem… again i wish i could help on the sensory part but i have no clue about that one… i think that Matthew kind of just outgrew a lot of it. It is funny though because Hailey and Matthew do seem really similar in so many ways… I will keep you updated as to what we find out and see if we can help you out more.

When you get a chance, yes, email Nancy… I sent her a REALLY long email with Matthew;s history and she read through it and suggested the dvd consult… I think that she deals with so many parents from out of state (she is in Michigan) that she had to come up with something like that.

On the supplements… it is really a tiny amount. We are doing 1ml of Nordic Naturals omega 3,6,9 in lemon flavor this week… well i put it in his yogurt and he did not seem to notice at all. I prob gave him .1ml at a time in the spoon… so hopefully you can sneak it in?

On the tone — we thought low tone in trunk/face. She said that he is actually low tone overall but more so in hips/trunk/face. She noticed things like slightly locking his knees on standing; he sits welll but with a tiny bit of back rounding; when he crawls, his hips kind of separate; when he goes up and down the stairs, he needs to regain his balance; when he tries to run, he is not moving his arms properly and he is not getting his knees up, so he kind of runs with straighter legs… these are little observations she was making all througout the eval. The low tone is not preventing him from walking, sitting, getting up, climbing small surfaces… it is more like bad postures if you know what i mean?

On the talking… it could well be low tone… matthew drops the s at the beginning of words too — the SLP that was there was amazing and she was using PROMPT to read through Brown Bear, Brown Bear book and he was actually able to make sounds he had never made before with her assistance… so who knows? He was making the proper S sound when she gave him support.

I hear what you are saying about dev peds… funny thing is there are some here in the city that have a reputation for putting labels on kids (usually ADD, ADHD, spectrum) and we stayed away from those and went with Agin because of her SLP background and because we heard she did not like labels etc. Are you able to choose which dev ped you go to?

Just so that you worry a little less — Agin told us that reflux can really affect kids and all of the things we were seeing could just be the result of reflux (this was kind of a general statement at the beginning). She read the report from June given to us by the SLP at KKI, evaluated Matthew and said that if the report had not been written by an SLP who had worked with Matthew at KKI, and we had just told her where Matthew was at 22months old (vs 26 at evaluation), she would have thought the parents were lying. She said the progress was amazing and she has only seen this in cases where the child was really sick… so she thinks Matthew was really suffering from birth until a couple of months ago or so… she said he was just not ready to process anything from outside world and was just kind of in protective mode… She asked us questions about when he started sleeping through the nights, for how long, when he started allowing people in his mouth, became cuddly etc and they all happened pretty much one after the other… kind of like he was overcoming things.

ANYWAY — i am writing so much these days because i do not want to forget… ask me anything you want, will keep you updated anyway… will report on whether the fishoils work etc etc

HUGS

[Anonymous]

Lori–

I don’t have much time right now for in depth, but in scanning your post, I’m very much reminded of Aidan’s speech early on. He didn’t have much speech at all when starting therapy and when it did finally come it was very jumbled. One of the trademarks is putting the ending sounds at the beginning. Especially P and K sounds. For the longest time pink was kapa and pickle was kipple. So when you said “toppi sawah” it made sense to me. Aidan still does this (it’s gotten a lot better) and after a while the “mistakes” become predictable. Oh and deleting ending sounds to is classic. scared sounds like care in our house and so on.

As far as the team goes, we do have the team it’s just I put it together and choose who headed it up. If you have people you can use for the school or EI, by all means don’t feel like you have to go the dev ped route. It’s nice to have both sides though. For us we have the p/s supervisor, teacher, ST and OT also an adaptive phys ed teacher. Then we have our “private team” who is our dev ped, ST, and OT. and our dev ped has the final say to everyone which is nice. To have someone not in the school system who’s looking out for Aidan’s best interest has been key for us. Anything you can get the school to provide would probably be in your best interest. Private therapy is CRAZY here, ST billed at $233 and OT $210 an hour. Aidan was being co-treated and getting both once a week!

Also a lot of what your describing sounds sensory to me. The way it’s been put to me is “everyone has sensory issues, but when it’s getting in the way of normal functioning it’s time to look further”. Aidan couldn’t last 5 minutes in the store 2 years ago. Last week at the grocery store he was walking ahead of me down the aisle saying “follow me”!!! To have him called outgoing and chatty is amazing for us.

Ok gotta get my kiddos in the tub. I hope you don’t mind me putting my 2 sense in. If there is anything else that you think I could help with let me know. Take care, and I wish you the best of luck, follow your gut you’ll do what’s best, it’s a mommy’s way!Amber2007-10-11 21:16:29

[Anonymous]

I was looking at the Nordic Naturals ProEFA capsules and it does contain Vitamin E as well, but it doesn’t look like the amount that is suggested. Do I give the ProEFA and a Vitamin E capsule as well?

[Anonymous]

The capsules contain a TINY bit of Vitamin E… so people get a separate supplement… we are waiting to get Matthew started on Vitamin E because they want to see his labs… if you want, once we get them back i can tell you what they are looking at?

We are not doing teh capsules, we are doing the Complete 3,6,9 instead because it is prob easier for me.. ie otherwise, you may have to squirt out liquid of capsules and put it in a spoon.

[Anonymous]

I also wanted to add that Aidan’s dev ped did tell us that in dealing with communication disorders where there are also sensory/frustration/agression/ issues that normally as the speech comes the other issues fade. This has been extremely true in our experience and has eased up in every area except oral.

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