Hearing Issues - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > CMTC

Reply
 
Thread Tools Display Modes
  #1  
Old 05-16-2010, 10:21 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default Hearing Issues

Looking for anyone who may have had a similar experience. My daughter Becca has CMTC and has struggled with body temp. issues since birth. These are getting better but her hearing has also been a concern. My question is if anyone has had hearing issues related to CMTC. The other thing is that as the temp. is getting warmer we are seeing improvement in the hearing. I am wondering if the hearing could be related to the temp. just like the body temp. regulation and activity levels are. I asked the audiologist if she thought her hearing issues could be related to CMTC since there is inconsistency in the amount she is affected. She didn't know. I do think there is some relation having to do with her vascular system. She did say that there are many very small blood vessels supplying the ear and that if flow isn't good that could affect this. We know that her hearing is lower through the air and better on her bone. We also know that her ear drum is not functioning properly. They told us that is usually related to ear infections but that doesn't seem to be the case with Becca since she has only had one ear infection (no family history of chronic ear infections in our other children either-two other ear infections total in my other three kids). I haven't found anything about hearing issues in my research but it was a question the pediatric derm. that diagnosed her asked. At the time we saw her we didn't realize hearing was an issue because she was so visual we thought she was hearing everything. The hearing issues were noted when she was screened for Birth to Three services. The concern is that we see so much inconsistency in her hearing that the audiologist doesn't think we can correct it because she does hear some of the time. I am worried because as a teacher I know that any auditory input you miss in school has a huge impact on learning. I worry that for her she is missing a lot of input when she is not hearing. Speech/commmuication is also starting to improve and the speech teacher agrees with me that there must be some connection to the temperature because she is seeing this same change in her hearing. We have had huge changes in communication in the past month. Communication skills are so closely related to hearing that we want to make sure we are doing everything possible to give Becca the best start.
Reply With Quote
  #2  
Old 05-16-2010, 11:16 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,726
Default

Can you go back to the ped derm who first asked you about it? Perhaps that doc has the answer, but since you didn't know that hearing was an issue then..

It makes sense that decreased blood flow to any part of the body would affect it adversely.

As an aside, my son's eardrum also was not functioning properly and they said the same thing... too many ear infections. Yet, he hadn't had that many. Now, though, at almost 7, he hears just what he wants to ( )

Have you asked the CMTC expert these questions? http://birthmark.org/experts.php


Missy
Reply With Quote
  #3  
Old 05-16-2010, 11:26 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default

I will be asking the pediatric derm. about it when we go back to see her. Unfortunately we will not see her until July. I was hoping if someone else had experience I could get some input since, I believe, she will be the last doctor we see when we return to Mayo. We will see the audiology before we see her and the audiology knows nothing about CMTC just like the other audiologist we saw.

I haven't asked the CMTC expert since that never works for me (I can't ever ask an expert for some reason). I will give it another try though.

The audiologist that we saw in April said we should try to talk a doctor into putting tubes in her ears (most won't want to since she doesn't have chronic ear infection) because of the ear drum function issue but I don't want to do that when we don't even know what is causing the issue. If it is related to her vascular system putting tubes in is going to do no good.

I understand what you are saying about hearing what they want to hear-our 8 year old is the same way!
Reply With Quote
  #4  
Old 05-16-2010, 11:31 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default

Missy-
I tried the ask an expert again. It still doesn't work. I then tried to register but I couldn't because my e-mail is already recognized for my login for the forum.
Reply With Quote
  #5  
Old 05-17-2010, 11:32 AM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,726
Default

If you go to

http://birthmark.org/user/ and use the username and password, same as the forum, you should be able to ask an expert.

Missy
Reply With Quote
  #6  
Old 05-17-2010, 03:32 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default

Can't. Tells me it is an unrecognized user name or password.
Reply With Quote
  #7  
Old 05-30-2010, 02:32 AM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default

The last couple of days we had noticed that Becca didn't seem to be hearing very well again. We were surprised because her hearing had been so much better since the temperature had increased. Well she woke up yesterday screaming bloody murder. She now has a double ear infection again. The doctor thought we were nuts because she said as bad as it was she should have been screaming for days. She hadn't even been crying when she went to bed the night before. She said her pain tolerance must be incredibly high. That makes me wonder how many other ear infections that she has had that we never caught because she didn't get crabby. I am beginning to think I should try to find a doctor to do tubes because this is getting a little crazy. I think I would be able to talk someone into it since these ear infections just keep coming back and we know that her hearing already has issues. I can't wait to see Becca's doctors at Mayo in July and get their take on her hearing issues and see if they think this is related to her CMTC.
Reply With Quote
  #8  
Old 05-30-2010, 12:56 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,726
Default

My son went through the same issues with ear infections and a high tolerance for pain. I wouldn't even realize he was sick until I touched him and realized he had a fever... then the doctor would say, "And he never touched his ears or pulled on them or anything?"

Once, we went in for something else and she noticed a cut over his eye. And she said, "How long has that been there? It needed stitches!" No tears, no stitches... those are my rules.

In Kindergarten, he broke his arm. Didn't cry. Didn't tell anyone. They didn't know until they took his coat off after recess and his arm was at the wrong angle!

There are real PROBLEMS when a child's pain tolerance is this high. Make SURE it gets noted in every doctor's file. I have seen that look on doctors' faces... when they don't know us and think I have ignored a problem that should have been causing a great deal of pain. I have to say, "He's autistic and one of his sensory problems is a very high tolerance for pain."



Also, it should be a good argument on your side for tubes... if you can't tell when Becca's ears hurt, you can't catch an ear infection in the early stages. That's why my son has some damage. Ear infections that are that bad do damage.

Missy
Reply With Quote
  #9  
Old 05-30-2010, 02:12 PM
abatie abatie is offline
Senior Member
 
Join Date: Oct 2009
Posts: 235
Default

Thanks Missy! I appreciate your comments and advice. The doctor made me feel so stupid but she hadn't done anything to make me think there was anything wrong. My husband said the same thing. My friends talk about their kids screaming and they take them in and an infection has just started and isn't bad at all. I always feel bad because I don't realize she is hurt because she doesn't cry. She has never cried for any immunization shots and she can fall and hit herself and I don't realize it until a couple days later when she has a bruise.
Reply With Quote
  #10  
Old 05-31-2010, 01:22 AM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,726
Default

I know EXACTLY what you mean!! LOL I have so been there, done that.

Missy
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump