Questions... pulling my hair out.

Discussion in 'General Parenting' started by amandaf, Jan 7, 2010.

  1. amandaf

    amandaf New Member

    Okay, so yesterday we took our son to the pediatrician to discuss our concerns... Here's a link to my first thread with what's going on:

    Anyways, the pediatrician talked about Bipolar (which I don't think is what's going on), Fetal Alcohol (which is what I do think is going on), and mentioned Autism. Ultimatley, he said what we already knew which was that he couldn't know how to diagnosis that & gave us 2 referals.

    One referal is for the Psychiatry department at the children's hospital and the other is for teh Developmental & Behavioral Pediatrics department. The psychiatric dept he said would take about 3 weeks to get into, but that the Developmental & Behavorial would take about 6 months. We decided we want to do both (as it sounds like the Developmental/Behav. thing is VERY extensive with lots of different specialists spending time with our son & then coming to a decision together as to how to diagnosis him).

    Well, I called the psychiatric dept just now to make an appointment & they said first of all that they're booking 4 months out & second that they don't think they should see him if my main concern is FASD (the doctor put conduct disorders in the referal I guess) and that we should go straight to Developmental & Behavioral. So then I call them.... they won't even book an appointment for me until after they've had the referal for 5 days (dumb).

    I'm SO FRUSTRUATED! I just want to get on the path to finding out what's going on NOW! I feel like depending on what the issue is, that I'm loosing time.... for instance, if it's FASD, the frontal lobe of his brain is developing for only another 2 years... there's things I might be able to do to make a difference during that time IF I knew how & I knew that was the issue... Same thing with so many other problems we could be having. I'm just at my wits end right now & hearing "We don't want to see him here" and "You'll have to wait 6 months" is NOT what I need to hear right now.

    Is there anything I can be doing in the meantime... anywhere I can be looking for something diffferent? I feel like I'm grasping for straws at this point.

    Also, for those of you who have delt with the departments I mentined above, do you know how your insurance covered it (if at all?) I tried calling the insurance to ask them what our coverage was on things like that & I basically got no answer there either.
  2. susiestar

    susiestar Roll With It

    As for insurance, it really varies from policy to policy. For our insurance if you see a medical doctor like a psychiatrist (psychiatrist) then it is considered a specialist or a primary care doctor depending on what the doctor does. If it is just talk therapy of some kind then it sometimes is billed as a doctor visit and sometimes is billed as a specialist visit. We pay only a copay for this. medications are covered just like other medications for infections and things.

    Tests are usually covered as far as I know. If it is a medical test like an EEG then your insurance company will be able to tell you how it is covered.

    I completely understand your frustration and feeling like you will run out of time to help him. It really hoovers but these days the docs just don't feel like helping people. Which sickens me. I cannot figure out why some of these people became doctors. They sure are forgetting their oaths, in my opinion.

    If you do not have a parent report it would be a great thing to start. You can find it in the FAQ where I think the thread title is Parent Input/MDE.

  3. tictoc

    tictoc New Member

    The waiting is very hard. For the psychiatric Dept, I think you should call them back and mention that the pediatrician thought your son might be bipolar. Even if you don't think this is what is going on, mention it as a way of getting in. And, also, so you can get another opinion on the issue. Make the appointment for whenever they have one available, but also get on the cancellation list. You never know when something will open up. Then, carry all of your paperwork around in the car with you so that if you get called at the last minute for a cancellation, you will already have it with you (We had 2 hours notice to make it to our new psychiatrist for our difficult child, but we got in a month earlier than planned).

    Good luck.
  4. TerryJ2

    TerryJ2 Well-Known Member

    I feel your pain. Seriously.

    First of all, you are doing all the right things. And it was neat that your pediatrician actually mentioned the 3 most obvious things and immediately referrred you. Good job. (Doesn't mean you can't still talk to him about it ... in fact, you should, ea time you visit one of the other doctors ... fax him the info and he can stay on board.)

    Insur. depends upon which company you have. Most ins. requires prior notification for specialized visits, so in one sense, it's better that the referrals aren't happening, say, tomorrow, because you don't want to go into the appts until you have all your ducks in a row.

    Also, if ins covers one thing and not another, it will allow you to plan financially, either make several smaller payments to the referral dr, or take out a loan, etc.

    And yes, this is exactly how it works and how it feels.

    Last edited: Jan 7, 2010
  5. Andy

    Andy Active Member

    Insurances need procedure codes to know how something will be billed and you would need to get that from the offices your are going to. Once they accept your child as a patient, the first step will be a consultation. The office should be able to tell you the correct terminology and procedure code they bill this as so you can contact the insurance company.

    I just went through something similar for the neuropsychologist evaluation my difficult child had. The insurance company asked me for specific terminology of why this was being done. If I used English, it would have been denied because the medical world has their own definition of every day words. I had to give them the terms and codes the neurology office gave to me.

    After your first visit, the doctor can then provide a treatment plan with different codes and terminology to pass by your insurance to see what will be covered. Sometimes the insurance company can tell you with the consult info what further items would be covered. I was told that if the neuropysch testing was to only diagnosis a specific learning disability, insurance would not cover since they believe schools can test even though schools will drag their feet for years and years until the child outgrows that school and it will never get done unless there is a severe case the SCHOOL wants tested (Schools can care less what parents or doctors ask for).

    We definetly need more specialists in every field. The waiting list is forever for everyone and like you said, even a few months is a large chunk of time lost in a child's life. The needs out there are just so great. So many kids looking for help. I would talk to the doctor giving the referral about your specific concerns and see if his office can't speed up that time line. Usually an urgency from another professional is taken more seriously than an urgency from a parent even those who are as well informed as you are in the development of your child.

    I hate that they say they don't "THINK" they are the right place. How do they know until they have that consultation? They need to go through the steps of gathering and reviewing what they need before making that decision. I would keep pushing that card, "My child's doctor believes that you MIGHT be able to help us. Referrals are not handed out unless there is an inkling that that would be the correct route."
  6. pepperidge

    pepperidge New Member

    I understand your frustration. I do think the developmental specialist is the way to go. We got good info from our referral to one when our son was young for FASD issues.

    I think there are things you can do in the meantime, especially because if it is FASD they can only treat the manifestations. Look into your county's early intervention program. They were the ones that got my son speech therapy after he was evaluated by pediatrician. It was free. They do their own evaluation and you don't need the a referral from the pediatrician.

    Really the only things you can do for FASD is to have a very rich cognitive environment, good parenting, medications to deal with extreme rages etc, and therapy to address any developmental concerns (speech, occupational etc).

    So try to address what you see now as the obvious lags--don't worry about the diagnosis--and you will be doing what you can.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I have a son who was exposed to substances and I wouldn't go to the psychiatrist first off for anything Fetal Alcohol Syndrome (FAS) related. He will probably miss it...not his field. I'd actually want to go to a neuropsychologist, which you didn't get a referral for, but I think that would be a good place to start. If you have no choice, I think the behavioral specialist is better than the psychiatrist and I wouldn't mention bipolar because, although it may get you in, it biases the doctor and if it's Fetal Alcohol Syndrome (FAS), well, that's totally different with real organic causes and damage.

    My son was five when he had a multidisciplinary evaluation--that's sort of like the behavioral clinic. They WERE thorough, but they still weren't right about what my son's main problem was. All you can hope for with complicated kids like ours with strange birth histories and unknown factors are working diagnoses, which means "it looks like it could be this, we'll treat it, and go from there." I would have him evaluated either yearly or bi-yearly as he gets older because whatever you are told is wrong may change as he ages and his symptoms become more clear. Classic Fetal Alcohol Syndrome (FAS) behavior is extreme hyperactivity and an inability to learn right from wrong. They forget or can't impliment what they are told from day to day. Autistic kids are also common when there is drug exposure. They do remember day to day and can retain what they learn. Make sure you get your son the right help regardless of his diagnosis.

    If your son has Fetal Alcohol Effects (FAE) (fetal alcohol syndrome without the facial anomalies) it is VERY hard to get the right diagnosis, although telling that birthmother drank will help.

    Do you have a subsidy or Medicaid as part of the adoption? We really found that helpful in the diagnostic stages. All university hospitals and most children's hospitals take Medicaid.
  8. amandaf

    amandaf New Member

    What about diets? If it's not FASD & something else (ODD for instance) it seems that changes in diet (no dairy, etc) can make a difference from what I've read....
  9. TerryJ2

    TerryJ2 Well-Known Member

    Even with-FASD, a special diet can help. I would defintely go that route while waiting for dr appts.