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Old 07-21-2006, 07:52 AM   #1
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JenBer HB User
Getting help in Chicagoland area.

I have a 5 yr old son with signs of being on the autsitic spectrum. He has seen a pyschologist, has been in OT and is just starting Speech Therapy. We needed to get a definate diagnosis for insurnace and school purposes, so
I took him to a neurologist yesterday and was very disappointed. He was with my son for literally 2 minutes and said he is not autistic he has ADHD and handed me a prescription. I told him I do not want to medicate my son and will continue to try the therapies. He told me that will not work he needs meds and when I said no again he said "well then he will never go to school." I just walked out. I couldn't believe it. I have had a peditrictian, a pyschologist and 4 therapist tell me he is on the spectrum. I am so confused. How can a doctor tell in 2 minutes without running any tests?? I need to find a doctor in the Chicagoland area that tests for the Austitc Spectrum. Does anyone know of a good doctor? Thanks for the help.

 
Old 07-21-2006, 08:28 AM   #2
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elmhar HB Userelmhar HB User
Re: Getting help in Chicagoland area.

Hi JenBear,

My son is now 16 yo, and I've kept my sanity w/the docs over the years by keeping a certain perspective. Unfortunately there is not, as yet, a totally objective & universally accepted test, like a lab test, for autism. Different dxs from different specialties is pretty common. With child psychiatrists who are not autism specialists, its even worse. I had 2 of them tell me: "put your kid in a room with 100 of us, and you'll get 100 different diagnoses". Which may tell you something: it's not yet an exact science.

Doctors are medical consultants. Each specialty has its own perspective on what works. Every doctor has his/her own personality & level of skill. I understand your disappointment w/the neurologist -- I would have expected a few tests, myself. But that's OK, there will be someone who can help you.

Your best bet is to find not a generic specialist, but someone who specializes in autism. If you're near Chicago, I'm guessing there's more than one special clinic. Contact local organizations -- support groups, or national groups like ARI, DAN, AutismOne. They may be able to give you local names. Major universities may run autism clinics. But the key is, to vet beforehand, with more than one person, that the doctor or clinic runs standard autism observational rating scales, at the very least. And that at least a few folks have had positive diagnostic experiences.

Best wishes.

Last edited by elmhar; 07-21-2006 at 08:29 AM.

 
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Old 07-23-2006, 02:08 PM   #3
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gotitbad HB User
Re: Getting help in Chicagoland area.

I think I can help you. I am in the northern suburbs of Chicago and have 2 boys ages 9 & 11 who were both diagnosed on the autistic spectrum at age 1 with ADHD added at age 4, who are now doing great...in regular school, talking, learning and improved about 75-80% from when they were young. I will say they have both had speech, OT, PT, play therapy, social skills groups, music therapy and other interventions, but putting them on medcation since age 3 has made all the difference. I have many friends and aquaintances with kids who started out like mine but have made little to no progress because they only did therapies and refused to medicate their kids. Without the psychiatric and neurological veiwpoints, I believe my kids would still have severe autism because they would not have been "calm" enough or able to focus or understand what the therapies were trying to accomplish. The medication alone would not have been enough either because they weren't born with the skills they needed to exist is society. I STRONGLY believe it is a combination of both that is the answer. I took them to a doctor in Boston from Harvard who said he has never seen such progress. I highly recommend Dr. Michael Chez, neurologist in Libetyville, IL to start out. He will do an EEG to look for seizure activity which many of these kids do show, both of mine did. Excellent child psychiatrists are VERY hard to find. I can get some names for you if you want or check with your pediatrician. Do not use anyone you are not totally comfortable with. Your childs future is at stake! Whatever else you need just ask. Maybe something good can come out of my 12 years of struggle.

Last edited by gotitbad; 07-23-2006 at 02:09 PM.

 
Old 07-23-2006, 02:43 PM   #4
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ReblB HB User
Re: Getting help in Chicagoland area.

Gotitbad,
What medications have been helpful for your children?

 
Old 07-23-2006, 08:58 PM   #5
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gotitbad HB User
Re: Getting help in Chicagoland area.

I'm glad you asked....
My oldest who in now almost 12 was put on Depakote and Klonipin originally when the overnight EEG (the only type of EEG you should have done) showed mild seizure activity at night. (We were concerned because since birth he was literally not sleeping more then 1 hour at a time day or night and then up for an hour or more.) He was also put on celexa to try and calm his OCD tendencies. The key to his speech was at age 4 1/2 giving him prednesone suppositories 75mg once a week for 6 months after the neurologist found a problem in a certain area of his brain. He went from no words to a few words in a couple weeks to phrases in a couple months to full sentences by the end of 6 months. It was truly a miracle. Many of his "bizzar" behaviors and "stimming" literally stopped and never returned. I attribute a lot of those behaviors to frustrations of not being able to speak and communicate. I feel strongly that speech is a huge key to success in overcoming much of Autism's struggles. We have always had trouble with his eating as he only eats 6 foods and drinks only water and organic 2% milk and his behavior can be a little overly sensitive and aggressive at times. By age 5 he was too aggressive so we stoppped the celexa and tried many combinations of anti-depressants with anti-seizure meds and antipsychotics, but didn't have a lot of luck getting him stable but now "over drugged". We decided to stay away from anti-depressants. Around age 6 he was having trouble academically, mainstrreamed with a one-on-one aid, so we had him tested by a psychatrist who diagnosed the ADHD and started Adderall 15mg. This medication made a HUGE diffence in his ability to focus, stay calm, follow directions, read quickly, comprehend, have good eye contact, and stay alert. He has had extensive stomach issues and issues with frequent urination too. He takes Miralax twice a day for constipation and another pill for an overactive bladder. He's had extensive testing and all the doctors say they see this all the time with kids on the spectrum and there isn't much they can do. By age 8 there was no more seizure activity on the overnight EEG (we took in it the hospital once a year) so we stopped the Depakote, but he was aggressive so we switched to Risperdal .5 mg which has worked great. Now he just takes Adderall 15mg am and Risperal .5mg pm and a multi-vitamin.

My younger son who is now 9 1/2 had a similar experience. He was put on Klonipin originally when the overnight EEG (the only type of EEG you should have done) showed mild seizure activity at night but he was sleeping normally. He was also put on Celexa to try and calm his OCD tendencies. The key to his speech also was at age 4 giving him prednesone suppositories once a week for 6 months after the neurologist found the same problem in the same area of his brain as his brother. He went from no words to a few words in a couple weeks to phrases in a couple months to full sentences by the end of 6 months. It was truly another miracle. Many of his "bizzar" behaviors and "stimming" literally stopped and never returned. Around age 6 he was having trouble staying focused in Kindergarten, mainstrreamed, so we had him tested by a psychatrist who diagnosed the ADD and started Strattera. We tried weaning him off the Celexa at age 7 and realized without it he did just fine. At age 9 we switched to Focalin (Ritalin) from strattera because it was easier to administer (he can't swallow a pill so we had to mix the inside of a capsule with ice cream and it tasted terrible). At 6 age there was no more seizure activity on the overnight EEG so we stopped the Klonipin, but he couldn't sleep well so we restarted it. He now takes Focalin 5mg am and Klonipin .5 mg pm.

Please let me know if there is anything else I can tell you.

 
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