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Post by Deborah on Jul 14, 2004 6:15:44 GMT -5
Jennifer is scheduled this morning for an MRI and EEG. Just trying to rule out medical reasons why she is not talking. Of course 90% of me believes it is a DS thing, but I want to be sure. Anyway, I get nervous with sedation, so please lift us both up in prayer this morning. I will post later how everything turns out.
Thanks
Deborah
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Post by meghans_mom on Jul 14, 2004 7:06:58 GMT -5
Deborah - prayers for you both! Hope you find the answers you are looking for and that your little girl stays safe!
laurie
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Post by amyzimoski on Jul 14, 2004 10:04:39 GMT -5
Jennifer will be in our thoughts and prayers and I hope everything goes well.
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Post by Jenn on Jul 14, 2004 10:09:37 GMT -5
Hey Deb....ofcourse we will pray for Jennifer!
I hope you will find some answers out of this.
If you don't mind me asking, does she say anything at all? Has she had her hearing checked?
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Post by Cathy on Jul 14, 2004 13:23:05 GMT -5
Hugs and prayers headed South. Please let us know how it goes... we willbe waiting for an update!
Hugs,
Cathy, Katie and Emily!
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Post by paulineuk on Jul 14, 2004 13:41:04 GMT -5
Hello. I will be very interested to hear how Jennifer gets on with the tests. Nicky is almost 17 and had never spoken  although he can make some sounds. Pauline UK. |
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Post by Deborah on Jul 14, 2004 18:24:09 GMT -5
UPDATE... We were not able to do the tests. Jennifer didn't respnd to the sedation. She was given Noctec and it was supposed to knock her out. Well, it made her loopy and very sleepy, but not enough to actually go to sleep. She acted like an old drunk LOL. She sang and laughed a lot. She was cracking me up. I would almost get her to sleep and she would pop up. Very frustrating, but oh well. We will try something else. The doctor will be calling me in the morning.
Jenn, She has had her hearing tested twice and it is fine. She has a few "words" some are more clear than others but there is nothing there as far as " talking". Her SLP was the one who suggested seeing a neurologist just to see if there was something going on there. She wants to talk so bad, but can't seem to get it out!
Thanks everyone..I will keep you posted!
Deborah
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Post by shellk on Jul 14, 2004 18:53:15 GMT -5
sorry to hear that she didn't get her tests done...I know how ya feel about that knocking them out thing...Very scarey..Been there 2 times and don't care to go back..When Kourtney was knocked out to get her ears done and tonsils and adnoids she didn't even make it out of the operating room before she woke up and she was not happy they cam and got me and I went into the revocery room they brought her into and it wa sooo sad to see her she stood up on the gurney crying mom and blood was running out of her little mouth ..That I will never forget..The things we go thru.  Good luck hope they figure out what is going on... Michele |
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Post by momofrussell on Jul 14, 2004 19:45:31 GMT -5
Deborah, sorry the tests didn't go well. My oldest, Regan, had to have an EEG (or EKG can't remember) when she was 2 and didn't respond TWICE to the meds... she did what Jennifer did LOL I am curious on why the Neuro wanted to do the tests. ?? I am not doubting the doc, just curious Since Jennifer is only 4. Russell is 6 and STILL doesn't talk nor communicate except for primative pulling of our hands. Our neuro nor docs have ever considered other tests. He TRIES to say Square and R.. but it's very hard for him to say and doesn't try to repeat us, and he hasn't done it in a while. I talked to his teacher about other speach conditions i.e. Apraxia and other things like that and she feels it may just be the DS. Oue Ped Neuro that DX'd Russell w/Autism said that Russell may never talk.  He mostly does throaty sounds. We have heard his "normal" voice on occasion but the school never does. I keep wondering if there is something else going on.. or for Russell, it's just the DS and Autism... I would love to ask you more questions if that is ok with you... could you email me? momof3oneds@sbcglobal.net thanks Adrienne |
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Post by christie on Jul 14, 2004 21:43:18 GMT -5
Awwwww Deborah, I am sorry to hear Jennifer didn't respond well to the meds, BUT OMG can I relate to that. A few times Docs have given Chris something they Swore would put him out and didn't 
Hopeing what they decide to try next will work.
Hope you don't mind me asking BUT what is it that they are looking for??
Speech is Christopher's biggest delay and no one has ever suggested we do these tests??
Inquiring minds would love to know.
CC
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Post by Deborah on Jul 15, 2004 7:13:36 GMT -5
Christie, speech is Jennifer's biggest delay and it very well could just be an oral motor issue. But.. her SLP suggested a neurologist visit and an MRI just to rule out there being anything there causing all this. She has been working with her for so long and was hoping she would be further along than she is. I discussed it with my pediatrician and she agreed that an MRI wouldn't hurt just to rule out stuff. Jennifer will be 5 in October and this will be her last year in preschool. I want to do everything possible in this next year to get her talking enough to start kindergarten. After examining her the neurologist said she looks great and he is sure it is a DS thing but to be really sure we will do the MRI to rule out that. Right now we are just grasping at straws. I can't see the point of overloading her with speech therapy if the problem lies somewhere else. This is probably is all for nothing and she may very well start talking in complete sentences tomorrow. I haven't ruled out apraxia either. In fact I have been watching those videos (that were in another post) and have seen a few things in there that have been helpful.
If the MRI and EEG turn out fine we will be taking her to a DS clinic to have her checked from head to toe. Even though she has had hearing tests in the past we will do those too. My pediatrician suggested this just because they strictly deal with DS and it wouldn't hurt just to have her checked over. Then I guess it will be back to major speech therapy and more signing. And when she starts school I will have to give each teacher a crash coarse in sign language LOL.
Of course ya know I can always take Susan and Cathy's advice and attend an UNO gathering. I have heard it is guaranteed to promote speech!!
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Post by Robin on Jul 15, 2004 13:19:21 GMT -5
Deborah...Katie is living proof that unomas gatherings bring on speech so I say Labor day is it seeing as you would like Jennifer talking for kindergarten:D I remember how Chase didnt talk for sooooooo long and we were sure it would never come but it is here and he talks pretty good I think, although school would disagree with me, Susan says she understands every thing he says Chase went into kindergarten with almost no language and it was his most beneficial year I feel. Those other kindergarteners will teach her so much and at that age, they are sooooo into nuturing each other!!!
hugs, Robin
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although he can make some sounds.
He mostly does throaty sounds. We have heard his "normal" voice on occasion but the school never does. I keep wondering if there is something else going on.. or for Russell, it's just the DS and Autism...
