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EI First Time Today, We are not Impressed


 
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momuveight
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Location: DonnerPartywasHere

PostPosted: September 20 2007, 5:42 PM    Post subject:
EI First Time Today, We are not Impressed
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EI came for the first time for our four week old baby, who by the way is doing great according to our pediatrician.

We have been having feeding issues, oral aversion, tongue thrust, does not bottle well or stay on the breast long enough to get a good feed.

We had EI person come to the NICU while he was there to get him eating and she seemed pretty good.

The person today said she has 26 years experience with feeding issues and DS but could offer nothing new in how to feed him. She came and did a feed, got nothing into him with the Browns or the Haberman. I wanted to try the Platex Natural Latch and provided those for her but she did not try them. I had to leave halfway through for another appointment and she left telling my husband we are doing a good job and competent parents and she has nothing to add.

That was not helpful at all. We are no further ahead than before.

Some other things that really annoyed us is that she is able to have all of his medical records without even a release signed by us. Apparently the state has an agreement with the hospital so records are released without any consent from us.

Services are voluntary but she was offended that our doctor called her this morning to let her know we were hesitant about services and that we are a good family and baby is doing well.

So how do we get what we need from these people?

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lespring
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PostPosted: September 20 2007, 5:59 PM    Post subject:
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I'm sorry you're not feeling very confident in this person's abilities. Go ahead and try the other bottles on your own and see how he does on them. Angela used the playtex and did very well on them. (though this was 11 years ago so I don't know if they're different now than they were then. They had the "nuk" shape at the time)

Do you know if this person was a special ed teacher, or a speech therapist, or an occupational therapist?

An Occupational Therapist, or a Speech Therapist are best equipped to deal with feeding issues.

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momuveight
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PostPosted: September 20 2007, 6:11 PM    Post subject:
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She is not ST or OT but calls herself a child development specialist.

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ecki
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PostPosted: September 20 2007, 7:33 PM    Post subject:
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Not sure how the system operates where you live, but if you don't want EI services, you don't have to take them, or you can take them later. I know there are several on the board who didn't use EI and their kids are fine. It all depends on what works with your lifestyle and your comfort level.

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elizasmom
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PostPosted: September 20 2007, 8:01 PM    Post subject:
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I really think about it as building my daughter's team. You have to do what's best for your child according to your parental instincts. We live in an urban area so we have lots of choices to find the right fix. I have been really lucky in that i really love my daughter's team (as does she!) We are on our second home educator as our original one went back to grad school when Eliza was 2. Though they are very different in specialties they were/are both awesome. I remember the first thing our educator wanted to do was find out if i wanted a speech therapist referral for feeding issues. I didn't, but it's a pretty common thing to do and they can give you exercises at least to start strengthing the low tone of the mouth.

Some people skip the home educators and just go straight to PT,OT, and ST, though here the home educators are also coodinators who write up the reports for the six month IFSP. They are also a wealth of information for me now that Eliza is getting sort of close to preschool age.

For beginning PT the woodbine books are a great place to begin before you actually have a PT.

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Cameron
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PostPosted: September 20 2007, 8:07 PM    Post subject:
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Cameron was referred to a PT by 2m. I have found the EI people not very useful. If you are having major feeding problems, I'd request an OT or speech person. Maybe if we knew what state you were in, someone could help you more.

You really need to find what is best for you child. He is young, and just needs love right now. Therapies are helpful, however. I am one that is still overwhelmed by all Cameron has, yet he is still far behind. But, being a teacher before kids, I just can't decline any services. I would feel like I wasn't doing the best for my child. But, I really do still take things with a grain of salt, or try to. You are your child's mother, the one who listens to others and then decides the best course of action. It really isn't fair all that we go through in the beginning. I often feel like Cameron's youngest years have been robbed. It is hard, but I still think it is worth it. You will not love every EI or therapist you meet!

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Brooke 4/1/03 and Cameron (ds) 4/8/05

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Oliviasdaddy
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PostPosted: September 21 2007, 6:59 AM    Post subject:
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Well, I am still a rookie at this but during the 8 weeks of Olivia’s life, I have learned a lot. When Olivia was 4 weeks we had our first visit from EI. They came out with our case manager and a pediatric nurse. The nurse did an evaluation on Olivia and ranked her on something called a Hoover’s scale (I may be wrong on that one). Olivia scored very high and because of that they did not want to recommend that she needed any additional services at that time (OT, PT, ST, etc). As soon as we heard this, we thanked them for their professional opinion and said since she is doing so well, we want to keep it this way and not wait for a delay. It took some more reinforcement from us, but we got OT 1x a week when Olivia was 5 weeks old. I have since tried getting a special ed teacher for at least a consult, but since EI uses their initial test as a benchmark they do not feel that she would benefit from it. This is the frustrating part because they want to wait for a delay before services are given. We are learning to pick our battles with EI, and when we do approach them, go prepared.

As far as the feeding goes, OT can help you with this. Our OT showed us some oral stimulation exercises to wake Olivia’s mouth up. For example we lightly pinch her lips and also use our fingers to form fish lips on her. We also got a NUK Massager to role across her tongue right to left and left to right. This really works well.
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momuveight
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PostPosted: September 21 2007, 1:47 PM    Post subject:
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I called her and asked her to come out with ST. So we have an appt. for that and meanwhile we are going to continue to do what has been working for us.

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Emdad
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PostPosted: September 21 2007, 4:48 PM    Post subject:
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I agree with the previous posts; Oliviasdaddy puts it very well. I also think that you and any therapist need to have a clear understanding of expectations.
For us, EI did not involve feeding issues, it was more what I would call "play therapy." What was important to me was learning from the therapist ways to see different interactions as therapeutic - things that we should do between visits. Playing with different textured toys, putting blocks into the right-shaped holes (I know this is future for you, I'm just using this as an example), stuff like that. A big deal for us was getting Emma to sit up properly, and EI was great in providing both equipment and techniques for Emma to accomplish that.
We have also stopped some therapies, play groups, etc. a couple of times, too, because they just weren't appropriate for Emma or us at the time. You will find therapists that take an approach that it's their way only. It's tough to judge sometimes what is right, but ultimately you make the best, informed decision you can and move on with it.

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momuveight
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PostPosted: October 03 2007, 7:10 PM    Post subject:
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Second visit Monday. I thought it went good, she helped me with positioning him for feeds and that helped.

BUT today our pediatrician calls because a doctor we have never met called her from EI with the complaint that we were not using the Haberman bottle. It was tried for a week and failed. Then we have used the Dr. Brown ever since and he gained an ounce a day although still having feeding issues. All of that has been explained on both visits.

EI could not get him to eat from the Haberman either.

I feel so undermined.

He is on an NG tube and we are seeing a GI specialist tomorrow to find out why he doesn't eat better and then following his recommendations.

I don't see how it is helpful to have Big Brother coming by.

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lespring
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PostPosted: October 03 2007, 8:05 PM    Post subject:
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Oh, I would be throwing a HUGE FIT!!!! I mean HUGE!!!! I'd be calling someone's supervisor and asking "Since when does the EI person feel it's his/her job to decide which bottle I'm supposed to be using for my kid?"

grrrrrrrrrrrrrrrrrrrrrrrr you have every right to be annoyed. I would also ask that since you feel you would have trouble trusting this person in your house, you want a new person.

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pookeymom
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PostPosted: October 03 2007, 8:51 PM    Post subject:
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Wow, I'm kinda surprised by your story as well. The people who come into my home, come in with suggestions or comments but they by no means TELL ME what I have to do or what I have to use.

Never lose sight that this is your child and all decisions should be made for him as were the other decisions you made for your other children. If someone tells you something that makes you uncomfortable, talk to the next person and then the next. Its hard to do sometimes when you have so many different, and new, people suggesting this or that or the other.

I'm sorry your not feeling very confident in the support staff you have coming into your home. We have to towel and NUK the twins before feeding to strengthen then suck and swallow. I would recommend a speech therapist for these problems as well. The OT told me he's in charge of getting foods and drinks to the mouth, anything from the mouth on is the Speech Therapist. That was interesting information I thought.

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violettesmom
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PostPosted: October 04 2007, 6:29 PM    Post subject:
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I bet you feel undermined...I had an LC who I met with F2F call my pediatrician after a visit and read him the riot act for not basically forcing him to force me to start my child on a supplement. I'm pumping full time for her now, and I KNOW I can feed her breast milk this way. She was slow growing (which is typical not only of kids with DS, but was the same with my 2nd typical child who was also jaundice.) My ped rolled his eyes when he told me this, but I was po'ed. She should have told me face to face. I think I intimidated her. Oh well. Anyway, my doc has known me since I was 12 (he was my doctor and I'm 41 now, lol) and he knows that if I say I'm pumping around the clock and I have enough milk, I do.

She's a pudgy little thing right now and by my estimates in the 85% for DS kids and around the 50th or typical kids. She didn't know me, didn't know my history of nursing 2 other kids to the 95% for weight, lol, and should have told me. Just like that person should have told you.

In everything, every decision (DS or not) YOU are the child's mother. It is called "medical advice" for a reason. No one knows your child better than you. Not that you don't already know this, but more as a point of support for you!!!
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