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kharmasmama
04-02-2009, 11:07 PM
So, Kharma's ENT doc is in Portland, which is a good two hours from our house. He's incredibly busy and we only see him maybe, maybe every 4 months. We've seen him a total of three times since she's been out of the hospital, one for surgery. He doesn't pay attention to what's going on with her day to day, and doesn't listen to me. Last time we drove 90 miles for a ten minute appointment. Her local ped is a great guy and I like him, but there is a definite lack of communication between her doctors and I just feel like she isn't getting the care she needs. I can't get a referral to a speech therapist, and its killing me. She wants to talk sooooooo bad and each time I see her trying with all her might I feel like my heart is being crushed. ARGH!!! Is it too much to ask that her ENT doc PAYS ATTENTION TO HER? I know, I need to find a new ENT, but there are so few docs in our area ( the closest one is in Portland ) and hers has been with her since birth. I just feel stuck. Utterly stuck. Sorry for the rant... I'm just gonna lose on some poor schmuck in the grocery store that stares at her trach if I don't do something. We try to do signing, but I need HELP!!!

kirafaesmom
04-02-2009, 11:18 PM
Oh wow! I didn't realize you were in Corvallis. I live in Portland. If you don't mind me asking, who do you see? Kira gets all of her care at Doernbechers and I LOVE our ENT.

suzanne2545
04-03-2009, 06:04 AM
You do sound stressed out. Slow down and try to take things one day and one issue at a time.

I don't know Kharma's back story so some of this may be irrelevant but here are some thoughts:

1. Can you try for speech therapy through your community. The states each have an early intervention program for kids under three. If she is almost or over three there are programs through the school system. You don't need a referral for these programs. They qualify kids on their own.

2. Try to find out why they won't do a referral. If nothing else this will give you understanding of why or understanding of how to battle this notion.

3. What resources are you using for sign language. Many of us use the signing time videos. They are absolutely invaluable and priceless as far as we are concerned.

4. Talk to others about different ENTs. Just because your daughter has been with one person since birth doesn't make it right that he/she continues on with her care. Think of it this way: if you moved you wouldn't think twice about the fact that you were getting new carers for her. If nothing else, a pediatrician who really listens and partners with you is key. Our pediatrician in Canada was fabulous. We moved a year ago to MI and I still e-mail him on occasion with questions or asking for his thoughts on a subject with Parker.

5. I feel your pain on the driving. A couple of weeks we drove 5 hours, had a one hour appointment, and then drove home 5 hours. It is a pain to be sure but because I trust and like the doctors where we are going I don't bat an eye at it or feel really annoyed about it. That makes all the difference.

6. Vent away on here. Everyone experiences it and we all need an outlet and at least here someone will get it it!

:hug:

Suzanne

Isaac'sMomandDad
04-03-2009, 07:17 AM
Look like Kharma had the same diagnosis as my son, Isaac, and Suszanne's son, parker, (as well as many other kiddos on the board), Idiopathic Bilateral Vocal Cord Paralysis.

Our son had speech therapy once a month from the time he came home from the hospital. We got an evaluation by children's developmental services (Early Intervention). In our state, you do not need a doctor's referral, any parent (or caregiver) can call and request a screening of their child. Do to his 'severe expressive speech delay' (not vocalizing due to trach), he qualified for services. Mostly what they did was help us with some signing and play. He really didn't start signing until a year.

At 18 months we were lucky in that he was able to get his trach out. Now, at two his speech is 100% normal. We were actually discharged from services (at my request) b/c not needed anymore.

I can't answer your question about the ENT. We love our ENT and will drive three hours each way for a visit, but it is a major pain in the butt. If you are not happy with your pediatrician, start looking around for one who has experience with children and trachs. It is not a common thing and someone who 'knows' can be a huge help. Do you get nursing help? They may have some suggestions for peds who work with other kids with complicated problems.


Hang in there!

Lara

TommysDad
04-03-2009, 10:40 AM
We feel & understand you pain & frustration fully! Our ped won't take care of trache/lung concerns. Communication is all done between us as parents any the doctors not doctor-to-doctor. We are like Suzanne and many other parents here. We travel out-of-state for Pulm & ENT because those are where the specialists are that we feel can best take care of Tommy & his needs, and you have to have trust and confidence in the doctors you are dealing with. We could stay locally & we do have local ENT & PULM who still get Tommy's med records from out of state forwarded to them so incase of an emergency, we might need to show up at their door steps. But we kind of looked at it like, we need to cut out the middle man, and go the direct route with doctors who have the experience we feel comfortable with.

As for therapies, parents are their children's best advocates!!! Whether its an Early Intervention (birth to age 3) program or state public schooling, or even hospitals/doctors/surgeries, children have rights, and it's often left up to us as parents to make sure their rights are being addressed and taken seriously. If the programs aren't advocating for you child, it's up to you to step in and take a very active role to make sure your child gets what he needs, but please do it delicately & professionally because you will have to work with these people for a very long time. There is a difference between coming across as defensive and in-your-face verses advocating out of love and concern.

If you don't know where to start, PM me, and I'll do some research. We have no night nurse for a few nights. I need something to keep me awake during my sift:D

~Maggie

Ainsley's Mom
04-03-2009, 11:17 AM
This is very good advice because speech therapy is only part of the answer. I'm sure you'll be able to get it through a birth to three center through the state. Teaching sign as an alternative until your child is better able to use her voice is a great place to start while you are getting into a ST program. I recommend the Signing Time videos too and it can help to actually sit there with your child and form the signs with their hands along with the video. Hopefully this will reduce some frustration.

Good luck!

kharmasmama
04-03-2009, 02:15 PM
This is very good advice because speech therapy is only part of the answer. I'm sure you'll be able to get it through a birth to three center through the state. Teaching sign as an alternative until your child is better able to use her voice is a great place to start while you are getting into a ST program. I recommend the Signing Time videos too and it can help to actually sit there with your child and form the signs with their hands along with the video. Hopefully this will reduce some frustration.

Good luck!

We use the Signing Time videos, and try to apply some of the signs to her every day activities, but it just doesn't feel like enough. I didn't realize that Early Intervention did their own screening and that I don't have to be referred to it. Thanks! I just gave them a call as soon as I read that and we have an appointment :D :D

Ainsley's Mom
04-03-2009, 02:22 PM
We use the Signing Time videos, and try to apply some of the signs to her every day activities, but it just doesn't feel like enough. I didn't realize that Early Intervention did their own screening and that I don't have to be referred to it. Thanks! I just gave them a call as soon as I read that and we have an appointment :D :D

:hooray: That's great! Sometimes I think the doctors assume that we all know how this stuff works and they just don't bother to tell us.

faywrayy
04-03-2009, 03:13 PM
:hooray: That's great! Sometimes I think the doctors assume that we all know how this stuff works and they just don't bother to tell us.


This is so true! Kate was discharged at 3 mos old and only case workers and OT/ST at CHOP told us to call EI ourselves. No doctor ever even mentioned it. Start there and then work your way through the slop. We also travel out of state (2+ hrs away) for ENT, plastics and GI. It's been worth it, because she's gotten very good care and we couldn't be more pleased with how things have turned out for her.