Seizures and Needing Neurologist Experienced with Kids with Multiple Disabilites

Updated on December 23, 2008
J.Y. asks from South Elgin, IL
5 answers

Here is a recap of what I've posted elsewhere. I really need to find a Neurologist that is experienced with kids with multiple disabilities (Lorelei has Hypotonic Cerebral Palsy and Autism...that we know of). We've seen Coker (at CDH) previously and wasn't happy after meeting with him. And Swisher at Children's...he was okay, I guess. It'd be refreshing if the doctor was open to listening to the parents about their knowledge of their child! :-)

We live in South Elgin (northwest suburbs).

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

So What Happened?

We did get a positive EEG back, right frontal lope. Doc recommended Dr. Sperry, since we did not want to go back to Dr. Coker at CDH. Since we also get assistance through DSCC, I had to start there first to find out who they have as providers were: Dr. Coker, NO. And Dr. Schnitzler. Who also happens to be who our specialist, Dr. Mary Keen recommends. That helped ease my mind. I was anxious not to wait, especially with the holidays. So we went ahead with Schnitzler. With our PCP's help, we are going in on Tuesday!!!!

More Answers

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D.V.

answers from Chicago on

my daughter sees Dr Eugene Schnitzler out of Loyola

I know that isn't THAT close to you, but I don't know how often you need to visit.
My dd doesn't have multiple issues, but she has had a GradeIII brain bleed & hydrocephalus, with surgery.

http://www.luhs.org/template/luhs/physearch/primary_lastn...

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

A.R.

answers from Chicago on

We are seeing Dr. Sperry currently at Central Dupage

http://www.childrensmemorial.org/depts/neurocenter/neurol...

Before that, we saw Dr. Ikramuddin at Lutheran General.

We like both of them quite a lot. We only changed b/c of distance and convenience of appts for us (Lutheran doesn't have Saturday or evening hours.)

Both were willing to listen to pretty extensive background and to work with our psychiatrists, etc, and review other records....

My daughter had seizures ruled out, but it was Ikramuddin who listened to our wishes to do more extensive testing so we could feel certain.

Both are pediatric neuros.

Also, if you are looking for a pediatric neuro-psychologist, we used Dr. Michael Appleby, who specializies in giftedness and autism.

Good Luck,
M.

PS- I just saw that you live in South Elgin (we are in Elgin.) My oldest daughter who has the need to see the neuros is 8. My daughter might like being a "big sister" to your daughter if she is nervous about dr appts, or just wants to hang out with someone else who has to go through it all (I know that as an adult it helps to find those few and far between who understand the rigors of searching for an answer and having friends who are going through the same things!!) My daughter, Pixie, is diagnosed with Tourette's, SPD, and OCD. I also have a 13 month old. We have a very fun and safe playroom. Keep in touch :)

1 mom found this helpful
Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

M.W.

answers from Chicago on

J.
I do not often respond to what I read here, but I have a daughter who is now 21. At the age of 6 she was diagnosed with Hypotonic CP and possible Autism by a quack of a Neurologist. Litterally years....she was 16 in fact when she received a correct diagnosis of Congenital Lyme disease. I still believe my daughter has a form of high functioning Autism and because she is able to do so many things it is disregarded. I have taken my daughter to USC LA, UCLA, Huntington Memorial Pasedena, Sedar Cinai, Childrens Hospital LA, Childrens Hospital Loma Linda, Ca, Childrens Memorial Hospital Chicago, and I could name more. I only say this to say I have more than been there and it took me a long time to realize that a truely good neurologist worth his/her salt is hard to find. I still haven't....But, there is a Dr. over at DuPage Medical by the Stratford Mall. Her name is Dr. Waheeda Rossi, M.D. and she is an Internist that KNOWS thee best specialists and it takes the guess work out. There is also a Pediatrition in Arlington Heights I believe and her name is Dr. Shelia Pantinkin....very good....listens and believes you and goes to bat for you...she also would more than likely have good resources. My daughter also has multible disabilities. You can also check out these resources. They have been a tremendous help to us....
www.power-in-motion.com www.audiblox2000.com www.mindeyeconnection.com I hope this helps you. If you want to e-mail me you ____@____.com just refer to this page or site in the subject box so I will open it.
God Bless

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

D.R.

answers from Chicago on

I see a wonderful Neurologist, Dr. Laura Goldstein at Northwest Neurology and they have offices in Hoffman Estates, Barrington and Arlington Heights. I don't know if the practice has experience in what you need (there are a few neurologists in that group), but it would be worth a call. I had to be hospitalized last year and was released the day before Thanksgiving. My neuro called my at home ON Thanksgiving day to see how I was doing! Dr. Goldstein listens to me and takes what I say to heart and uses it to diagnose and treat as much as her own observations and knowledge. She always says that I know myself better than she does and everyone is different. They are incredibly friendly and caring. They help you with insurance info and anything else you can think of. If would definitely be worth a call - they may be able to recommend someone too. Here is their phone number ###-###-#### (Hoffman Estates office) and website http://northwestneuro.com/index.html. Good luck!

Smallavatar-fefd015f3e6a23a79637b7ec8e9ddaa6

P.L.

answers from Chicago on

J.

I have to agree with the previous post in regards to Dr Ikramuddin at Lutheran General in ParkRidge. His partner - Dr Shah - is also fantastic! My oldest son was diagnosed with seizures just before he turned 3 - and it was a type of seizure that usually isn't diagnosed until children are much older. Because of Dr Ikramuddin's willingness to listen to me - and testing - we caught it years before we otherwise have. During the course of treatment - he also listened to my concerns - and responded to my requests - basically he was my "partner" in treating my son - not the dictator. If he didn't feel something would work - he explained it to me - and didn't make me feel as if "I was only the patient's parent - and HE was the doctor". We were truly heard - and healed - and I hope that you can find that type of care -where ever you end up seeking treatment. Dr Schniztler is also very good -he treated my brother many years ago - but if it doesn't work out for you - keep Drs Shah and Ikramuddin - in your reference bank.

Best Wishes- P.

For Updates and Special Promotions
Follow Us

Related Questions

Related Searches