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#26170 - 04/13/10 04:18 PM Speech Delays
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Brandyn is 21 months old and isn't saying many words at all. The words he does say, he doesn't pronounce clearly. He saw an ENT a weeks ago who said his ears are very blocked so we have stepped up his ear regimine and we are using olive oil in his ears daily. We go back for another round of cleaning with the ENT next week. Has anyone else found this to be a problem? He understands and responds to everything we say, he just isn't speaking. He is extremely frustrated because he can't communicate which means LOTS of tantrums when he wants something and we can figure out what it is frown

His pediatrician said she will reevaluate once his ears are cleaned properly but I have googled speech development and now I'm concerned. I know googling is bad!

Has anyone else had these issues and have they improved once the ears are cleaned?it all makes sense that if he can't hear properly he won't speak as well but I'm nervous that the delay could be something more serious. He doesn't have any of the signs of autism or related issues other than the speech though..
_________________________
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.

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#26172 - 04/13/10 06:24 PM Re: Speech Delays [Re: brandynsmum]
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Hi Morgan,

I sent you a PM regarding this post and hope it has found you. Let me know if it was not received.

Best Wishes,
Shannon

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#26173 - 04/13/10 08:21 PM Re: Speech Delays [Re: Laurensmom]
MomofPrincesses Offline
Member

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
We see an ENT every 3 months to prevent this from happening and yes it makes total sense that this would happen. A friend of mine has a now 10 year old who had persistent eat infections and he had very delayed speech because he couldn't hear. Once they put in tubes and got his ears healthy his speech took off! He is EXTREMELY bright and making straight A's so please don't let this worry you. I am sure its simply b/c he can't hear and once he can you will not get him to stop talking! smile
_________________________
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

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#26185 - 04/14/10 04:25 PM Re: Speech Delays [Re: MomofPrincesses]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Thanks Kati! We see an ENT every 6 months ( used to be every 3) but I guess that wasn't often enough. I'm going to speak to the ENT next week and get the name of a speech specialist. I think early intervention is key and having his ears cleaned may fix everything but as the ear blockage will be an ongoing issue I think it's probably a good thing.

Thanks Shannon smile

I can't wait until I can't stop him from talking LOL!!!
_________________________
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.

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#26189 - 04/14/10 06:03 PM Re: Speech Delays [Re: brandynsmum]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I mostly manage ear care myself. I bought an actual otoscope for about $75 or so, and that thing is sooooo much better than the cheap penlight-with-a-head that I was using. Very worthwhile.

We don't go to the ENT very often because most of the time I can manage the ear care on my own.

My 4yo is speech delayed/apraxic. He had middle ear fluid problems at birth, and repeatedly failed the newborn hearing screening. By 2 months old, we had ear tubes. This fixed the drainage issues but I was unable to flush his ears so was dependent on the ENT to clean them out. By 20 months he was clearly behind. By 3 he was still not talking as well as his siblings did at 2. He had the tubes removed and is now in speech therapy twice a week. He is a few months past 4 now and we are starting to hear some improvement in his clarity.
_________________________
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"

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#26192 - 04/15/10 02:02 AM Re: Speech Delays [Re: Hearsay]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
we had our first ENT experience today. Casey is 2 and her speech is developing very well. More as a screening measure.
He was good, offered to remove the buildup under G.A. if we wanted but didn't think it necessary given her normal language development. We opted out. He did suggest putting drops of Olive oil in her ears daily and will see her in 2 months.
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#26286 - 04/25/10 08:46 PM Re: Speech Delays [Re: KimNL]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Thanks for your replies smile We saw the ENT and he tried to clean Brandyn's ears again but they are really blocked. He said it will take several more tries and Brandyn just goes ballistic so the decision was made to clean his ears under a general anaesthetic as his speech is becoming an issue. He also said that there may be fluid in his ears so he asked for permission to put tubes in if he finds fluid.

So we go in on May 6th.. I'm happy to finally have this issue taken care of but of course I'm nervous about him going under a GA. He went under a GA at about a week old for a broviac line with no issues but it's still unnerving.
_________________________
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.

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#26287 - 04/26/10 12:38 AM Re: Speech Delays [Re: brandynsmum]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
It is unnerving, I think because you have so little control once he goes into the OR.
My eldest, Kaitlyn has had to go under GA several times to have her ears cleaned (microdebrided). She does not have ichthyosis but her ear canals are small and get impacted quite easily.
Good luck!
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#26295 - 04/27/10 07:54 PM Re: Speech Delays [Re: KimNL]
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Morgan,

Lauren goes in the OR under general once a year for a really good cleaning and is otherwise seen every few months in the office. At Brandyn's age we were doing it in the OR every 6 months it was so bad and she really couldnt get done what needed to be done outpatient at that age. Now she will sit for some digging and a little irrigation but it never really gets the deep stuff or the stuff on the eardrum. It is so quick under general that by the time John and I sit down in the parent waiting area, they are calling us in to see her in recovery. We havent had to deal with the tubes thing. Let me know how it goes.

Shannon

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#26296 - 04/28/10 02:47 AM Re: Speech Delays [Re: Laurensmom]
Sideshow_bob Offline


Member

Registered: 02/11/09
Posts: 61
Loc: US, Midwest
Curious to know how the tubes go; in the past I know there has been some debate on the issue because of the increased skin growth.

Shannon, it was so good to see you all again! We miss you!
_________________________
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

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