Page 1 of 2 1 2 >
Topic Options
#26624 - 07/17/10 02:24 PM Sensory issues
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Brandyn has just been diagnosed with apraxia, dysarthria and sensory issues frown I was wondering if anyone has kids which sensory issues? His speech pathologist said some of the sensory issues could be because his skin is so thick particularly on his feet and hands. I'm feeling really frustrated frown I worry about him because I know that ichthyosis may be hard for him socially and now a severe speech disorder will make it even more difficult for him to communicate.

Any advice or tips appreciated!
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

Top
#26625 - 07/17/10 07:04 PM Re: Sensory issues [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Aww hun. I'm so sorry to hear your news. Did you have concerns before they gave you these diagnoses or were they given at a routine appt? Unfortuantely I don't have any advice or tips as we haven't had any such issues to deal with (apart from concerns re: hearing) but Maya was slightly delayed in speech for whatever reason, but once she reached 2 and a half there was no shutting her up!!!

Take care & keep ur chin up! xx

Top
#26626 - 07/17/10 09:55 PM Re: Sensory issues [Re: BritMum]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Thanks for your reply Britmum smile We have suspected a language delay for awhile so the apraxia diagnosis wasn't a shock unfortunately. He will say "ellylwo" for "yellow" and "atha" for that so I think the diagnosis of apraxia is spot on. I wasn't expecting the dysarthria or sensory issues though. after the SLP pointed out that he wasn't using the muscles in his mouth/face properly, I can see how she diagnosed him. It's really the sensory issues I'm confused about. She is a very prominent SLP so I do trust her but of course she hasn't seen ichthyosis. The sensory issues are not her specialty so we've been referred to an OT. He does not respond when his hands and feet are touched and he has an extreme food aversion to fruit and will gag and vomit if he touches it :S. This is going to sound strange but she also said kids with sensory issues point their fingers really well instead of using their hands which he does but to be honest, I think he manages to use his hands well. Perhaps he doesn't have 100% mobility due to the thickness but it hasn't stopped him from doing what he wants! Having said that, he isn't able to use a spoon or fork well but I'm not sure if that is abnormal for a 24 month old??
His receptive language is extremely advanced and she said he is very intellegent which is why he is so incredibly frustrated that he can't communicate, poor thing. We are starting therapy once a week but have been advised that kids with apraxia need 3-5 sessions a week!!! And wouldn't you know, our insurance only covers $1,600 of speech therapy a week frown just the once a week session will cost $6,000 a year! I'm just totally frustrated.
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

Top
#26627 - 07/17/10 09:57 PM Re: Sensory issues [Re: brandynsmum]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I meant to say the insurance only covers $1,600 a year not week!
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

Top
#26629 - 07/17/10 10:14 PM Re: Sensory issues [Re: brandynsmum]
Luckymum Offline
Member

Registered: 05/04/10
Posts: 29
I am also sorry for your news. Isurance sure is not all its cracked up to be, is it? Ours has been ok so far, but it has not been too complicated yet with our girls. I suppose it would alos be hard to upgrade or increase cover as it becomes a pre-existing condition?
_________________________
I have two daughters, both with nbCIE.

Top
#26630 - 07/17/10 11:21 PM Re: Sensory issues [Re: Luckymum]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
when I was younger and I had a speech impediment. I was in speech therapy until I was in 2nd or 3rd grade. (Mine was really just a lisp. Not too severe.)
_________________________
26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

Top
#26636 - 07/19/10 06:29 PM Re: Sensory issues [Re: Adrienne1]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
I really feel for you guys on the insurance thing. It must be so annoying that you pay for cover but when it comes to using it they restrict you in some way!

But if I can reassure you on one thing that would perhaps be that I have a 22 month old unaffected little girl who I can't get to use a spoon or fork properly for love nor money at the minute!! In fact if she will sit at the table and eat her meal it's a miracle! She's far too busy for that lol! She's much rather shovel her food in with her fingers and then she's off onto her next mission!

Keep us posted on Brandyn's progress and try not to worry too much. I do feel that sometimes the professionals are too quick to label `potential' issues far too soon in youngsters.

xx

Top
#26650 - 07/21/10 09:49 PM Re: Sensory issues [Re: BritMum]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
Hi Morgan,

I can so understand your frustration. I can't really comment on sensory issues. We haven't come across any yet. As Ivy has gotten older the skin on her hands and feet have become less thick. However she is 22 months old and like Britmum's little one she won't use a fork and will only use a spoon when faced with yogurt! Very messy! Think it must be toddler thing!

Keep positive and take care!

x
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

Top
#26667 - 07/23/10 10:58 PM Re: Sensory issues [Re: Ivy's Mummy]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Make sure you talk to the school. My son has apraxia, too. We had him seen privately and also evaluated through the school district. At 3 he qualified for SLP services for a half hour twice a week at no cost to me. My son has made huge improvements with just the school therapist. Likewise, our insurance will cover very little. It was about 10 sessions worth, and we ended up just going with the school for now to see how he did.

I have seen other kids with sensory issues, but never dealt with it in my own children, so can't really comment on that part.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

Top
#26671 - 07/24/10 03:54 AM Re: Sensory issues [Re: Hearsay]
Lauren Offline
Member

Registered: 10/14/08
Posts: 47
Hi jennifer, I just wanted to say Hi. And thank you for the bandage.Hope your family is doing well. smile

Top
Page 1 of 2 1 2 >

Moderator:  marcsmom, Sideshow_bob 

Copyright 2012 Ichthyosis Information