how to find a pediatrician that will listMamabear- If not one and the same than definitely they must be brothers. I hope that we have as much success with the DAN we will be seeing in Jan. as you have had with yours. Oh forgot to mention that the 2nd doctor we saw whom acutally has experience with children with autism never even addressed my dd the whole time he was in the room. He was forced to acknowledge her presence when I told her to answer one of the questions he had directed to me. He just wanted to give me the same lecture I had heard from the original ped. almost verbatim. ERRR!! As he was leaving the room. dd piped up well, it was nice seeing you. He was floored, I love that kid!!! Thanks for listening to my vent as well. If I couldn't vent here sometimes I would explode. ttfn I second what Lisa said. My ped tried to dismiss my worries too. Turns outmy ds has classical autism. Not a huge surprise to me, I had done my research. We still go to the same clinic, but I usually ask to see a different doctor, one who really gets what is going on. And, we only go there for physicals and such. We have a neuro guy for the other stuff, who is really good. Keep pushing! I had better luck going through the school system, initially. Good luck. Harriet Yes, pediatricians are TRAINED to reassure and dismiss, unfortunately. And in peds, dealing with anxious moms, it works ... 95% of the time ... so it is self-reinforcing. Unfortunately we must press our cases harder than most, as a consequence. I stuck with the same one, but do my own research and advocating now. The pedis I had back home were terrible about listening. Sean went 18 months without services because "I was an overly nervous mom, and it was just a twin thing". All that time, he was screaming 18 hours a day and stiff--no babbliing, and all sorts of other issues. HMO's actually paid the docs there to NOT refer to the major hospitals in Boston. I finally insisted that Sean get help--and wouldn't leave the office until they called. When Colin and Taylor were born, we got a new pedi but, she treated me the same way. She insisted I go to HER graduate school, Boston Floating Hospital (NEMC), even though I wanted Boston Children's. All that time, Colin was having blue episodes, resuscitated several times, and in their PICU, off and on for 6 months--I kept telling them about the formula coming out of his nose (he had a small cleft in upper palate), but they kept searching for other problems. I couldn't get my pedi to listen about Taylor showing ASD signs, shortly after her vacs. I self referred, this time and EI came right out. I got referred by THEM to a neuro that confirmed what I feared--she had asd, and it was severe. I found, finding parents with other kids that had challenges, my best referrals. I talked to my case manager here and she gave me a name of the pedi that dealt, specifically with challenged kids--and had genetics in his background which helped with the chromosomal disorder in 2 of my kids. I asked, I got--he never questioned my judgment. He always listened and never made me feel..um, stupid, to say the least. He told me one day that, when a parent has a GUT feeling, he had found it was usually right. I have stayed with that pedi ever since. Although I havent had good luck with the KU Med center here, I have had good experiences with my pedi and, when I don't like something, he tries to find me an alternative. If I call, I am in--no questions asked. I am now researching other parents to get referrals to specialists--which, unfortunately are all booked up and not taking any new patients. Ask some of the other parents, if you can..or the social worker, or your case manager if you have one, to refer some of their client's docs to you. I am very down on docs and it shows--but had they listened to me, I feel I wouldnt have buried one child, and had so many severe issues with my challenged kids. Yes, I am a bit bitter :) thanks so much for replying. I was beginning to think that was had the only pedi who does this. I guess that does make sense that they are trained to reassure moms but OMG they need to listen to moms b/c we know our kids! So I am thinking about having a talk to our pedi and nicely telling him to plesae take all my concerns seriously, i did see another pedi briefly b/c of insurance changes and he was the me way. You are right, we need to just press them more like crazy so they will listen. That's basically what happened, I demanded a speech evl but that was after she was 3 1/2 yrs old. There are about 5 other issues he would blow off. There is another dr there who does listen to me more, but I feel bad if I switch. He is the oldest dr in the practice. The big problem is I am too nice and passive, damit it. I feel bad I can't stand up for myself and I do a little bit better for standing up for my kids. ugh! I second what Kelly said. I too have preached and preached problems with my son since he was a couple weeks old. I too was told by several pedis that he was just colicy (I HATE that term - I think it's a flippin cop-out) and would grow out of it. Then because of the arm flapping at 10 months they finally had DS evaled really just to appease me (not that they agree) which took all of 10 minutes. I was told since he made such good eye contact and he seemed to respond well that he was fine. I have been ranting about possible metabolic problems it seems like forever. I have finally found a DAN! doctor that will listen. Our appt is in Feb and I simply can't wait. Maybe I'm wrong...but maybe I'm not! Anyway, I just decided about 5 months ago when my daughter was also becoming near impossible to handle (found out she has bad reflux and severe aspiration after 8 months, of once again explaining...the extent of the blood curdling screaming we were hearing daily) that I was going to put my sweet personality aside and be a hard hitting B of a mom. 5 months later, my daughter is almost all better. She is willing to lay down, be held some, not throwing her body backwards and most of all the screaming has easily cut in half. Even better my son is doing well too! I too believe other parents are the way to go. Find local support groups, call local schools, call the hospital therapists, call your governmental assistance programs (MRDD, Early Intervention) and gather all their references. I was describe the other day as "Fisty", but it gets the job done. Your mommy instinct will tell you which way to go from there. I am so blessed that I started the fight so early. I was lucky enough to come across other parents that have been fighting for so long that I just decided that I was not going to recreate the wheel. I was going to learn from their experiences and go from there. There are people that have been going through this for years and years. Learn from them...I did. I just read your last comment and chuckled. It seemed as though every time I took my kids to the pedi I had to see the oldest pedi in the practice (there are about 20). I knew we were not on the same page when at 12 months I asked about how to do sign language with DS and he gave me this blank stare and said "I've never heard about teaching babies sign language before". Really?! I felt so bad, but after a while I finally decided to tell the receptionist I would wait for another pedi instead. Well the older pedi accidentally still got our chart and came into the exam room. The nurse ran in and said "Oh, I'm sorry Dr. Old, she actually requested to see Dr. New". Ever since then I dread seeing Dr. Old guy in the hallway. I can tell he was very offended. [QUOTE=mamabear]The big problem is I am too nice and passive, damit it. I feel bad I can't stand up for myself and I do a little bit better for standing up for my kids. ugh! [/QUOTE] I give mean lessons, in exchange for my public water not being shut off. This is me on a good day, as a reference for you:
I talked to the nurses at Zach's school, they only handle special needs kids, so have lots of experience. Also, ask parents of special needs kids and ask who they see. I made an appt to talk to Ped first, and explained what was wrong with Zach, and asked if he was comfortable handling his case. I was told he knew nothing about his issues, but was happy to manage his case. It's worked out well as up to this point, the drs. have always given me referrals to which ever specialist I've requested. The staff are great with Zachary, and very tolerant when he turns off all the lights in the waiting area. They work with me to give us the early morning, or early afternoon appts so we don't have to wait long. Kelly, OMG, I'm laughing so hard I'm crying. I so need a lesson and that look! Also, love the "Dr. Old, and Dr. new" LOL After going through a few different peds that dismissed my every concern, I finally stumbled upon my dream pedi! She has been amazingly supportive throughout our journey down Autism Ave. NEVER once has she brushed off my concerns, as she believes that a parents gut is rarely wrong. I get any referral I ask for and follow up calls to see how things are going. She really is too good to be true. I am also lucky in the fact that she has an extreme curiousity about autism and frequently attends conferences and workshops to learn more. She also sent me to a wonderful developmental ped for my kids evaluations. LOVE HER!!! The moral of the story here is to shop around. I have "interviewed" and "fired" several pediatricians and dentists on my kids behalf. I too used to be timid and have the too nice syndrome, but since having kids that has all gone out the window. I hope you are able to find someone that you're comfortable with! We use a dev.ped for anything developmental or disabilty related. The reg. ped's have been horrible and most have been obstacles instead of helpful. I got one referral to the dev.ped. from an emergency doctor for speech delay when we were there for an ear infection. Also if you can get ST and OT assessments they can help get doctors to make referrrals to dev.peds. suddenly you're not a crackpot.
Well, I loved our ped also. I have three older nt children and he was great with them. When I voiced concern over our youngest he agreed to set up an eval with ei. When she was diagnosed I asked him if he would be comfortable seeing her or did I really need to check into a dev. ped. (not one in this town) he said he would be happy to keep seeing her and that although he does not have a speciality in dev. delays or autism he did have a close friend who was and would be happy to consult with him whenever necessary. So I stayed with him. When I presented him with a list of concerns and possible therapies, alternative methods etc., he said he would consult with his friend and get back to me. When asked later, he basically pooh-pooed all of the possible things I had presented. Said she was way too mild and doing excellently to pursue those type of things. Further said, that whatever I was doing was surely working and to keep it up. He then said that there was no scientific proof that any of those things actually worked and that no one without a "dog in the race" agreed they were the way to go. Yes, he actually said that and like a big DUMMY I only focused on the fact that he thought she was doing so well and appreciated the "pat on the back" he was offering me. Fast forward 2 years and he {fired us} from his practice for me not being comfortable with her receiving the booster shots. His way or the highway. This time he actually used the "no dog in the race" metaphore again and I let him have it. I told him frankly, I would be more interested in what the person with the "dog in the race" had to say about any trial or alternative therapy as it seemed to me they had the most to gain from the actual result. Walked out that door and have not looked back. Have been denied by several ped. since and have finally made an apt. with a DAN. I will no longer be one of those people who blindly follow the lead of the "trusted" ped. Sorry guys for the length, I'm bitter, I think it's a little noticeable. ha! ttfn I found that it's best to use the pediatrician for what the pedicatrician was trained to do -- be the body mechanic for children. Peds understand physical things, not developmental things. So depend on the ped for antibiotics, but find another expert for autism-related issues. I depended on a child psyhiatrist who specializes in autism. Many use developmental pediatricians. Please don't expect the average pediatrician to have the first clue about autism. Even in this day and age, they don't. However, if you like your ped, keep him/her for the usual childhood things -- physicals, childhood illnesses, school forms.ttfn, do we have the same pedi?! Well, he hasn't said the "dog in the race" comment yet but everything else describes him. I would be floored if anyone used that comment. We see a DAN dr now too who has son with autism, what a difference. The pedi has knocked down every alternative treatment and traditional therapy as well. This is the place to vent about this, right? I like our pedi as a person, he is great but I feel like he has dismissed every concern I had about dd and every concern has actually turned out a be a major problem that we could have worked to prevent from getting worse a long time ago. So how do I find a dr that doesn't say, "oh she is fine." I'm sick of it!!! Sorry, having a really bad day. So did you fire your pedi and how did you find a new one?
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