Dropping a specialist
amajane
member
Has anyone dropped a specialist or procedure because they didn't think it made any difference in their kid's well being?
Marley has feeding issues and very slow growth and weight gain. I fought to get her in with the only developmental nutritionist in our area. Now I'm thinking it's a big waste.
We've seen the nutritionists twice and I have been less than impressed. her recommendations were all common sense suggestions and during the last visit she answered a page in the middle of the consult and didn't excuse herself. We sat there listening to her talk about another patient on the phone for 5-10 minutes. When she was done she didn't even apologize. I would have been livid if I was that other child's mother and found out she was talking about my child in front of other patients.
Also, we updated Marley's swallow study which was also a big waste. It showed no changes in her swallowing in the last 9 months even though she had her tonsils and adenoids removed 7 months ago and I can clearly tell she is swallowing and chewing better.
So who have you "fired" and why?
Re: Dropping a specialist
I made the decision not to bring ds back to a private OT. The first one we had was great. Then we had to change when our insurance changed. She was nice and ds liked her but she did not challenge him at all. If he said he didn't want to do something she didn't make him. I felt like everything she was doing with him were things I already do at home with him. We finished with the last couple sessions that insurance was giving him but I won't take him back there and will be looking for a new OT.
I think that you know if your dc is benefiting from the services or not. If you don't think that they arehelping, I would definetely find someone else.
Amajane - sorry this is off topic.
Auntie - while I do get why you did not want your DS to be friends with Dan, I struggle with the thought that someone can reject my DS too because he is too rigid/dresses funny/is obsessed with trains. I know there is no solution to his, but how sad that some SN kids are excluded because they are too SN.
i am usually a "give the benefit of the doubt" kind of person but clearly this nutritionist is not professional. not to mention her violation of HIPPA law. i do realize that sometimes medical professionals need to answer a page or such and try their best not to be private. but seriously, she's a nutritionist. there's nothing that would have prevented her from excusing herself and apologizing if it was something that could not wait.
that being said, we haven't "fired" our geneticist but i told my husband that i wasn't running back and forth to them so they can poke & prod my son so he can be the topic of an abstract. thankfully they are now down to 1 per year visits.
we are also scheduled to see a nutritionist. my son has feeding issues as well. but he is doing so well eating. he is on the chart for height/weight but still not on the chart for weight alone. by no means does he look skinny IMO. i'm hoping they will help but i have a feeling, like you said, a lot of it will be common sense.
you have to do what you have to do. if you don't like someone then i think in all fairness you can make the decision to not go to them.
I also fired a very expensive nutritionist. It was when we started "the diet" and I needed something to go off of. I paid her $500/hr and she came up with a list of things that were common sense, plus 3 (yes THREE) recipes for meals...which included things like chick-pea burgers...yuck! Made them once and into the garbage they went.
What I needed was a menu, a place to start...let's say 2-3 types of breakfast, snack, lunch and dinner. She was this GFCF pro (I guess), but was unable to give me a simple menu.
I did better on my own with the GFCF cookbook I bought on amazon for $15.
Funny. We saw one of our EI therapists today and I'd just come on her to vent about it.
I've been trying to decide whether or not to drop her, but there's nobody else that would be able to replace her therapy slot. We have three people we're considering dropping--two who are "irreplaceable", because they don't have other therapists in the same arena who are accepting new students. We got rid of a PT several months ago. She was literally afraid of our DD--a few steps beyond just the avoidance that we typically get. I'm not into someone being afraid of my DD. That's a sure fast-track ticket out the door. She'd also been making comments about how jealous she was that our typically developing daughter talked more than her kids who were a year older. This kind of rubbed me the wrong way considering that she was there for therapy for our DD who will likely never speak.
We've definitely shopped around for doctors. I think we saw three geneticists and four GIs before we found the ones that we we felt good about. DD is very complex and we need people who are willing to challenge their knowledge to help someone like her. I wouldn't consider getting other opinions the same as "firing" someone. But we changed geneticists because the first one was totally unorganized and kept forgetting which tests we'd done so far, whether or not tests were available for diagnosis we were considering. With GI, we had a string of people who all wanted us to take different drastic measures without really knowing for sure why our issues existed in the first place. In hindsight I'm really glad I listened to my gut. Now we know that she has dwarfism and no amount of GI surgeries would have "fixed" that. We also will never return to our neurologist. She made horrible comments about DD. "of course her EEG is abnormal. Look at her. Does she look normal to you?". I'm still kicking myself for not complaining about that gem.
With EI, we're not paying for it, so its hard to think of dropping something that's free and comes to our house and start paying out of pocket to travel to someone else amidst our other appointments knowing they likely will not be able to help us either. And I don't like the idea of not having any one to bounce ideas off of.
We've dealt with nutritionists with our neurotypical DD, but I honestly haven't braved it up to meet with any for our DD with dwarfism. In my experience they're so hit or miss and I feel like in our situation (she can only have one food) there's not much variation or guidance that they can give us either than calorie recommendations, and I can figure out to stop feeding her when she starts vomiting and continue feeding her until then.
Sorry you had such a cruddy experience.
I fired a really, completely useless nutritionist after 2 sessions. My son is tube-fed for a variety of reasons that don't really matter. At this point, getting a tablespoon of baby food into him in a day was a GREAT day. He was well over a year old, and really needed more than just formula to complete his nutrition. When I asked her what we could do.. her answer was "he needs to eat more."
OHHHHHHHH.. I'm sorry! My bad.. I didn't realize I should just feed him. Thanks for your help.
I told our coordinator she was not needed and honestly haven't bothered with another. Between my own research, a friend whose mother is a nutritionist and our GI doctor, I'm pretty comfortable getting into him what he needs.
I also fired our old OT about 6 months ago. It was a combination of factors. She was really obsessed with things that I did not think were important. A prime example- toe walking. My son toe walks maybe 5% of the time. He had just learned to walk a few months prior. He walks flat footed just fine. He has no tone issues in his legs or feet etc etc. But she was convinced this was a sensory problem. Now, my son DOES have some sensory problems, but honestly.. this was not one of them. And no matter how many times I expressed that he doesn't do it often, she insisted on "treating" for it. Including weighting him down. Except that every time she'd weight him down, as soon as she took the weights off, THEN he'd toe walk.
I would ask if the toe walking was a problem and the things she was doing was CAUSING toe walking, why we were still doing them, but could never really get an answer. She was the type to spout familiar phrases that didn't mean anything. It was frustrating.
And then, over time, she just got increasingly negative. Reports would come home from sessions done at daycare and I was depressed, even angry. We had a particularly bad session where she essentially spent an hour harshly scolding my then <2 yo for not climbing through a tunnel the "right" way. (not always picking up a toy along the way, going out the side instead of over a pillow) At one point he fell over the pillow and smashed his face and she was all but disgusted with him. When I went over to console him and he was really hysterical with a big red mark on his forehead, she said "oh, maybe he really was hurt." (I'd have thought the giant THUD would have given that way)
She also was not treating for things I was asking for help with (refusing to bathe alone, for example) and it all just added up to the fact that I felt the Robbie was getting nothing out of it, and I was just more angry and upset every week. So I finally just let her go.
I honestly didn't even call our rep for that. I was so fed up, I just let him go w/o OT for a long while. His fine motor skills have always been at least close to age appropriate, his only lacking areas being around feeding which was being addressed by a speech therapist, so I just said screw it. We were getting 4 therapy sessions a week and I was just burned out.
Then at our last IFSP meeting, I dropped developmental therapy and PT. Both were on the cusp of qualifying. could have gone either way. (My son autoqualifies because of the circumstances of his birth) and I said no.
So we now just get feeding and speech, and OT (with a new therapist) 2x/month.
And I'm honestly almost ready to tell all of them to stop coming, too. I don't see much improvement anyway.. we have a fairly high family fee and it's just annoying to have people in and out of the house all the time.
But I'm afraid that he's getting benefit that I don't realize, so I'm hesitating. But man.. some weeks are harder than others.
FWIW, during the time he wasn't getting OT, we worked through his water/bathing issues, and his feeding issues have vastly improved the 4w we were w/o speech services because of a paperwork issue. Sometimes I think things just happen when they're going to regardless of therapists.
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We "fired" her local nutritionist and her endocrinologist.
They just weren't cutting it and I wasn't going to waste my DD's time with people who couldn't help her.
We googled around and found replacement doctors in a different state that are willing to work with us by email. If there are hospitals close by you could check there, or call your pediatrician and ask them for a new recommendation.