What should I ask the pediatrician?

[Sarah CB]

I finally got a referral to a pediatrician (he renovated and *lost* the last one) and I want to make it count. Ds (8) has multiple tics, possibly OCD (says the psychiatrist), anxiety issues, night terrors and in the past had a lot of stuff going on that rang a big "autism" bell in my head. Speech therapy, violin, and time at home have really helped to alleviate a lot of the issues we had when he was younger, but then new stuff came up. He could rarely make eye contact when he was younger, but that has gotten better. I no longer think we're dealing with autism as this ds is also very sensitive, has a lot of empathy for others, and a great sense of humour. He also likes to express his love for people and likes to be close.

 

Our doctor referred us to a psychiatrist who wasn't much help except to say we could medicate if his symptoms got in the way fo his life. I'm hoping that this doctor will be able to help or at least refer me to someone else who can help.

 

I'm guessing a neuropsychologist is probably the right person to see?

 

I feel very unprepared and I want to make sure I get some answers or at least get on the right track. When I went to my family doctor about the tics I asked about Tourette's and was told that it definitely was not TS because ds wasn't swearing. Let me tell you, that eroded the confidence I previoulsy had in my doctor. I'm hoping this pediatrician will be more knowledgeable in these areas.

 

So, any questions I should ask him?

[MicheleB]

Are you seeing the ped. in order to get a referral to the neuropsych?

 

I think, given what you've been through already, you should prepare a one-page "report" of all that's going on with your ds (symptoms, what's gone on in the past, your concerns, etc) and make sure the doctor gets it before your appt. For *us*, I like to have the doctor read through my concerns and then we talk/do questions, instead of ticking off every little concern and symptom in front of my child (again). KWIM? I have to think it gets hard on our little ones to hear their problems over and over....

 

If I were you, I'd just say, "I would like a neuropsych. eval. Can you refer us?" instead of waiting for the ped to hopefully suggest it.

 

Our children's doctor was more than happy to refer us on to anyone we or she thought was appropriate for our children. IMVHO, a good ped will refer you on, unless this is more of a specialized pediatrician you are talking about. Then perhaps he/she would have more insight and ability into the issues you are dealing with.

[Stacy in NJ]

Oh, boy. You're right to question your doctor based upon his comment about TS. My youngest is diagnosed as TS with ADHD/Inattentive variety. He doesn't do the yelling out stuff or cursing. Here's a link that may answer some questions about TS http://www.tsanj.org/tsanj/about/about-ts.shtml

 

To have diagnosable TS, your ds must have both verbal and motor tics for at least 1 year. Verbal tics are things like small coughs, throat clearing, who'ing sounds. Motor tics are like shoulder shrugging, facial grimcing. Tics can be simple (fast immediate sounds or actions) or complex (complete phrases or multiple muscle group movements).

 

One of my frustration with doctors is that frequently they seem to take their "cue" from me regarding diagnosis. They seem to provide the diagnosis they think I want. I think with neurological stuff there's a great deal of grey area and doctors can provide differing diagnosis'. Rather than focusing on the diagnosis itself, I would instead focus on the behaviors that are causing you/ds the most challenges, and try to get specific suggestion in how to deal (ie treat) them. So, ask specifically: how to alleviate the nigh terrors, how to treat the anxiety, how to deal with OCD behavior. Make of list of behaviors that are the most troublesome, and try to pin the doctor down on treatment.

 

Just a FYI, usually neurologist won't suggest medication for TS unless it's sever. Some ADHD meds and others will increase the intensity of TS tics. So be really carefull to ask about this with your doc.

[Hillary in KS]

Stacy in NJ is right on. I thought my ds (then 8) had a form of Tourette's, until I read up on how exactly a diagnosis was made. I then realized that wasn't it.

 

Ds had many tics, some verbal, was showing signs of OCD and axniety issues. DH and I were VERY concerned.

 

In the end, do you know what it was?

 

Allergies.

 

We suspected that ds might have some seasonal allergies (he was sniffling a lot for a LONG time), so we had him tested. BOY! Did he have allergies! It turned out the poor boy was allergic to everything they tested him for: dust, cats, dogs, molds, weeds, ragweeds, grasses, trees, pollens, everything. The allergist proclaimed him "Allergic to the world."

 

At the time, we lived in an old house (dust) in which the previous owners had housed both cats and dogs. We lived in the middle of the woods (grassess, weeds, trees, ragweeds, pollens) on the banks of the Mississippi River (molds). We loved living there, but it was hurting our child.

 

The allergist put him on a dose of allegra, twice a day. I took steps to combat the dust and pet issues in ds' bedroom. Within 2 weeks he was dramatically improved. Within a month I felt like we had our child back.

 

We moved out of our old house into another old house. But this one had no carpet (hard floors do WONDERS for the dust allergies), and no previous cats or dogs. We really worked hard to keep ds' bedroom a haven from the allergens.

 

Ds is 13 now, and both verbal and physical tics are gone. The anxiety and OCD issues are gone, and only reappear to a low degree during ragweed season (by far his worst trigger). But they are so mild that I think dh and I are the only ones who notice them.

 

I would urge you to have your child see an allergist (esp. a board-certified pediatric allergist), because your description sounds *so much* like what we had been seeing in our son. Allergies can do such *odd* things to kids, way beyond simple itchy eyes and sneezing.

 

Keep us posted!

[jensway]

I would write a report on what you are seeing or have seen in your son. My son has AS and he is extrememly sensitive, has a lot of empathy for others, and a great sense of humor--he's the comedian of the family. He also likes to express his love for people and likes to be close. He does also have trouble with eye contact. Guess what I am trying to say is that the autism spectrum is so varying don't rule anything out yet. That being said I also think that it is important to go with your gut. Have the report in hand when seeing the doctor.

[Misty]

Are you kidding me??? Your doctor actually thinks that all TS people yell out curse words???? My oldest daughter has mild TS and she has never said a curse word in her entire life!

 

To diagnose TS you have to have both vocal and motor tics for at least one year. Vocal tics can be anything from grunting, barking, clearing throat, coughing, or even spitting. If he meets this criteria, then I would say it's TS.

 

My 5yo has Asperger's so I've done a lot of reading about AS as well. Some AS kids can make eye contact and are affectionate and social and seem very normal. My oldest daughter is like this (the one with TS). She has many Asperger's traits, but could not be diagnosed because she is too social. I feel that if she had seen a doctor who specializes in AS then she might would have received the diagnosis. TS & OCD are co-morbids of AS so I wouldn't rule it out completely without a thorough evaluation by a psychologist or a neuropsychologist. Try to get one who specializes in AS. The fact that he couldn't make good eye contact in the past is a definite red flag! AS could be there even if it's not effecting him much right now. Sit down and type up his symptoms and take it with you to your next appt. Ask for a referral to the kind of specialist you want (psych, etc.). When I went in, I took 2 pages of symptoms for my daughter. I elaborated on each symptom and that's why it was 2 pages. But this also allows you to communicate with the doctor without discussing his issues right in front of him and also ensures that you won't foget to mention anything. I usually give it to the nurse who puts us in our room to give to the doc to read before he comes in to see us.