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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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#26300 - 04/28/10 08:34 PM Re: Speech Delays [Re: Sideshow_bob]
Laurensmom Offline
Member

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

Just sent you a PM. We had fun and will need to do it again soon.

Shannon

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#26303 - 04/30/10 01:38 AM Re: Speech Delays [Re: Laurensmom]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I'm really glad to hear that the precedure is quick Shannon! I guess what I'm also worried about is when they take him away from me because I know he will be hysterical and just petrified frown I wonder if they will give him something to help relax beforehand? I had something before my c-section but I'm not sure they will do that for a child.

Jen, wow I didn't even think about the skin growth affecting the tubes. We have an appointment with the derm on Monday so I'll see what he says. Perhaps he will say it's not a good idea?
_________________________
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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#26304 - 04/30/10 11:04 AM Re: Speech Delays [Re: brandynsmum]
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
Alex has had 2 surgeries and one ear cleaning, all under GA, and yes they do give them something to relax them before taking them back. In our area they call it Giggle Juice. For Alex it makes him very relaxed, to the point that he can't even sit up.
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#26305 - 04/30/10 02:33 PM Re: Speech Delays [Re: Sideshow_bob]
Laurensmom Offline
Member

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

I know that others have elected to do tubes (certainly an appropriate treatement for recurrent ear infection/fluid) and that icthyosis doesnt inoculate our kids from having ear infections and fluid (common childhood thing), so I will comment ONLY from my personal experience.

Our ENT has told me that the tissues of the eardum resemble or are the same as the tissues of the skin. What Ive been told is that the thicker condition of the eardrum and the turnover of the skin could complicate the whole tube placement thing, or minimally complicate the ability to maintain the tubes in place for any reasonable amount of time. We have been lucky in that Lauren has not had any recurrent ear infection and so we have not had to consider their placment. My advice to you is to get as much information was possible and make your best informed dicision, which is all any of us can do about any elected treatment.

As far as the OR thing goes. See if the doctor will let you walk down to the OR suite with Brandyn. I always accompany Lauren and while she is fearful and upset, I take some comfort in knowing that she knows I am there as she falls off to sleep. We also take full advantage of the "giggle juice". Good luck. You'll do great.

Shannon

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#26312 - 05/01/10 04:43 PM Re: Speech Delays [Re: Laurensmom]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Thanks Shannon smile I will speak to the derm. on Monday and see what he says. I have done quite of bit of research on the tubes but obviously there isn't anything besides an old post on here about tubes and ichthyosis. Giggle juice sounds good and I will most definitely ask to stay with Brandyn as long as they will let me smile I would stay in the OR if they would let me which I know they won't!
_________________________
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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#26314 - 05/02/10 12:23 PM Re: Speech Delays [Re: brandynsmum]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
I am taking Kenny to the ENT on the 5th. Last time I was there they talked about possibly putting him under to clean his ears but he is not quite a year old. Is he too young to have that procedure done. The doctor at Riley's said that they do it all the time there but I am still quite hesitant. I feel like Kenny can hear pretty well despite the build up. He responds very well to noise and voices and he even says ma ma and da da:)
On the other hand I wonder if it wouldn't feel great to him. I think his ears itch a lot and I imagine it's very uncomfortable with all that stuff in there, so I feel bad for him.
I hope everything goes well with Brandyn, hopefully that giggle juice works really well:) Praying for you and him!
_________________________
My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#26323 - 05/08/10 10:47 AM Re: Speech Delays [Re: Sideshow_bob]
Luckymum Offline
Member

Registered: 05/04/10
Posts: 29
Morgan

I hope Brandyn's ear cleaning went well. My daughter (we are in Melb) had her ears cleaned out under GA at 8 months and it went fine and it is very quick, even to fit tubes. I suspect we will have to do it again as they are building up again and we are finding it difficult to put olive oil in her ears. Also, she is very sensitive with drs due to when she was very sick just after she was born so she is very wary of all drs and any ear cleaning without a GA is a no go.

My second daughter (now 4 months - also affected), saw ENT last week and thankfully her ear canals are much broader and he prescribed ear drops to help clean them out (hydrogen peroxide) so we will see how that goes. I noticed Hearsay cleans his kids ears out with this too.

_________________________
I have two daughters, both with nbCIE.

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#26326 - 05/08/10 04:42 PM Re: Speech Delays [Re: Luckymum]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
So everything went really well!! He didn't have fluid in his ears so no tubes, just an incision into the ear drum to check which the doctor said would heal in 24 hours. He screamed until they gave him the pre meds but 5 minutes later he just lay in my husbands arms hiccuping like he was drunk! The anaethetist said he would act drunk and that is exactly what happened wink I was very happy they gave it to him because he doesn't handle medical situations well at all. He saw the ENT when we arrived at the hospital and just went crazy frown

They did not let me go in with him and just took him in which was hard. He cried and reached out for us which was heartbreaking but the nurse said he stopped as soon as she turned the corner. They said he was fine in the OR and let them put on the mask. I suppose it I had been there he would have screamed and wanted to be picked up so perhaps it was for the best I wasn't there.
No IV which was good as that just poses more issues and all in all we were in and out in 2 hours!!!! The ENT said his ears were so blocked there was no question he had conductive hearing loss so it was a good thing. He also said we will probably need to dothis again down the line bit really, it wasn't a big deal.

He was pretty difficult coming out of the GA. The nurse said they either sleep or come up confused and hard to settle. We experienced the latter! Once he had some crackers he was fine smile

Thank you everyone for sharing your experiences!

Candace, I don't think Kenny is too young but he may not need to have it done. A lot depends on how wide the ear canal is as Luckymum has noted. Hopefully you don't need to but if you do it's pretty straight forward smile


Edited by brandynsmum (05/08/10 04:43 PM)
Edit Reason: Because I can't spell today ;)
_________________________
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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#26397 - 05/27/10 02:41 AM Re: Speech Delays [Re: brandynsmum]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Just wanted to update and say that we had a 1 month check with the ENT and although Brandyn can definitely hear better his speech has not improved frown So we will need to see a speech pathologist. In a way I'm happy because now we can get the help he needs rather than his doctors just telling us to wait and see iykwim. Yet another person to see *sigh* He is so tramatised in medical environments poor thing but I suppose this will be more of a play environment. Fingers crossed!
_________________________
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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#26430 - 06/07/10 07:23 PM Re: Speech Delays [Re: Sideshow_bob]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Hi there

We've recently discovered almond oil for ears!! When I took my 3 yr old to her rountine derm appt a med student suggested it as it not only softens all the debris, but used on a regular basis it actually dissolves the wax that binds all the debris together. Only been using it a short while but had fantastic results already!!

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