[tri-med] Re: ABR and Craniosynostosis

Hi Erin,
We've had two ABR 's and a threshold ABR(little more extensive on sound 
levels  I think?)

In the first year we had an ABR--we were told it showed normal
In simple terms...the brain waves seem to respond normally to the 
sounds as they should.
At that test, Natalia was having seizures...not sure if that changes 
anything, but they noticed something I recall

Later we had another ABR--also told it appeared normal...

The reason for so many ABR's was that every time I would go to the 
Hearing Specialists, they would tell me she is hard of hearing.

I explained that she must here something as she humms serveral songs in 
in tune...

So we were sent off again for a threshold ABR...and again...the brain 
stem results show normal...

Not sure why the tempanagram(SP?) in the office shows something 
different, but she can hear....that we are sure...and at all levels...

As for the Craniosynostosis procedure to open us that front suture, at 
the forehead....This is the one thing I do wish we did!   At  4-7 
months, We were offered it by one Doc...( www.hopeforkids.com) .and all 
others around us said it wouldn't make a difference...I tried to 
determine  if their opinions were because she just "had no HOPE of long 
term survival"  or if they "just didn't think it would make a 
difference in her brain function and development."

It is a huge surgery and scary....
For me, looking back, I do wish we would have done it...Natalia is 
doing so well, it may have even helped more...

I was told recently that the window was up to six years...A few years 
back I revisited this idea  and then last night we discussed it 
again...I am so scared to put her through that at this point, but I 
will always wonder if it would have made a difference....

The thought of her having any pain in the future because of it concerns 
me, thought I accepted this awhile back but now....I may check with the 
first Doc once again, just to have some peace of mind....

Didn't see too many responses on this one...Has no one else had this 
front lope suture issue????

ThereseAnn mom to Natalia t13
http://www.thehealingpowerofprayer.com
http://www.livingwithtrisomy13.org

On Sunday, September 25, 2005, at 03:48 PM, callstheshots@xxxxxxx wrote:

> Hello all,
> We got some good news recently-they have declared Charlotte's heart 
> structurally normal! She does have some pulmonary hypertension but not 
> too bad.
> They have decided to do a surgery in February on her head-turns out 
> the metopic suture closed early during my pregnancy and so her 
> forehead is pointed. They said if we don't go in and release the 
> suture pressure could build up in her head, etc. Has anyone else been 
> through this? She has trigonencephaly which just means her head is 
> shaped like a triangle. We found out this is related to her partial 
> monosomy 9 rather than her partial trisomy 16. Any advice? Etc?
> Charlotte also failed four OAE test for her hearing and is having an 
> ABR this week. Anyone been through this? What could they possibly find 
> out that could help her? Is a hearing aid a possbiltiy? What have 
> other people done?
> Thanks!
> Erin, mom to Charlotte, partial trisomy 16, partial monosomy 9, almost 
> three months old!
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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