What a let-down. Lame-O Doctors

[mamakarata]

Neurologist - who I waited two months for an appointment with. Both my ped and immunologist were referring to him thinking HE would be the one to help. First of all, he left my son and I sitting in the little examing room for nearly an hour and a half! Barely looked at my son, did NO sort of neuro eval, talked to him for 5 minutes and then had a nurse take him so we could talk, which I did want him to do. Told me DS has tourettes and tourettes can wax and wane and be aggravated by strep. Refused to consider trying long term ABX. I even showed him school work from pre first episode, during first episode, after ABX and current. He said it's the way TS goes... So I figure I'm at a neurologist and I tell him I'm concerned about Chiari. I have it and need surgery for it. DS has started with bad occiputal headaches and says he sees stars whenever he coughs or sneezes. Neuro tells me "oh ACM is NEVER hereditary". I could tell how far I was going to get with him so I just left it.

 

Requested written report later for CST from neuro. Sent me chicken scratch notes that didn't even HAVE a diagnosis on them!

 

Husband vent!!( and no offense inteneded I know there are some GREAT dads here). My husband just does NOT get it! He brushed off pandas at first. Finally admitted that sure seems accurate, but continues to say "he's just a kid. he'll grow out of it". When I bring up expensive doctor visits, meds, special education, he gets annoyed. But then the one time he took DS out himself and DS had a total rage attack in the car, he called ME on the cell phone expecting me to do something about it!

 

Hugs. I leaned on "he'll grow out of it" many times before facing it myself. Because quite frankly, kids do outgrow many things! 5 years later, man that was a long phase! Glad to see the light.

[mamakarata]

We all understand your frustration .Been there ..and there.. and there. Ive even been to a Neurologist who placed my so in the hospital after dxing him with PANDAS for 3 days of IVIG.Then 3 weeks later decides that a paper he read says that IVIG is not helpful and totally drops us.So let me tell you this fight is not in anyway easy.Danny is doing very well right now I even hate to say it for fear of jinxing it. Hang in there and learn from those who have been there.Trying to convience MDs that their medical books may need to be updated is a fight I can not take on right now.It is our job as Moms and Dads to get our children treated a well again.

 

keep posting

 

melanie

 

 

Sort of my feeling too. I don't like groveling. (I want to say) Just give me my RX and shaddup! I hope your good streak with Danny sticks.

[Joan Pandas Mom]

It took me a lot of time and money to realize I needed to get to a PANDAS doc and stick with a PANDAS doc. I know how you are feeling--believe me, you are NOT alone. I went to a neuro (NOT on the list here) a while ago. He said he treated PANDAS. He agreed with keeping my son on abx but referred me to another neuro who specialized in adult movement disorders. A friend asked me, "why? What is a movement specialist going to do? Teach my son the moon dance?"