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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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