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Thread: No Diagnosis

  1. #1

    Default No Diagnosis

    Well, it has been a very difficult and stressful few months. The appointment came up today for the pediatrician and we were pretty nervous. We told her all about the tics and the attention problem but she did not give us a diagnosis. She said that he needs to have more tests done. She told us that our son is a highly intelligent child and that it is not uncommon for highly intelligent children to have ADD. But she did not say anything about his movements so I asked her about them and she just said more tests need to be done.

    I feel that I need to talk about this because I feel upset that his tics were ignored. The tics is what bothers my son and I feel that for him emotionally it would be better for him to have a name for all of his movements.

    Sometimes I feel that we are back to square one. I already knew he was really smart and we still don't know for sure if he has tourette syndrome. Steph

  2. #2
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default No Diagnosis

    Hi Steph

    Don't get discouraged. The doctors as a rule don't jump to a diagnosis especially when it something like TS. She will need to be sure she has ruled out everything possible and has a good understanding of your child, history, etc. These things take time.

    I was diagnosed with TS through my oldest son's diagnosis. When things started to "present" with me second son, our pediatrician (TS is her area of focus) started following him, at years of age. Even when he jumped repeatedly and ran impulsively into the traffic when storming and even though she knew he was storming almost everyday at school in Grade 1... she did not attach the diagnosis.. it was late into grade 1 ie he was yrs before she said she believed he was on the TS spectrum :?

    Please don't be frustrated by her caution... If you believe it is TS, then put things in place as if you have the diagnosis. I know your son is bothered by the tics. Have you told him you suspect TS? does he know what TS is? does he know there is a family history?

    Try to find comfort in knowing you have a doctor who wants to be sure and run all the tests she can to ensure she is correct in her call.

    Please stay connected and let us know how things progress.
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  3. #3
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,906

    Default No Diagnosis

    Steph,

    I agree with Janet, as it sounds like your physician is taking a responsible approach. A diagnosis is made by ruling out several conditions based on medical history and additional diagnostic testing.

    Your Ped may request another consultation from another specialist and/or may wish to consult with one of her colleagues...a frequent and responsible strategy employed by physicians.

    When you asked the doctor about her evaluation of your son's tics, what was her reply?

    It should be kept in mind that the practice of medicine is art combined with science. Not all physicians practice in the same style, but they do base their conclusions on the same science.

    A competent physician won't be telling you what you want to hear, but rather report on the findings of their testing. The sum total of their testing should form the basis of a diagnosis.

    You have made good progress, and this is the first step. If there was an arrangement discussed for the next step, then focus on that second step.

    Follow up in the diagnostic tests your Ped wants to do, ask the doctor lots of questions and become an active partner in your son's care.

    By all means stay connected with us so together we can work our way through to a successful conclusion.

    Regards,

  4. #4

    Default No Diagnosis

    Hi, I did not tell my son that it might be tourettes because I could be wrong. Even though he has all the symptoms and has had tics for years, I wanted to be cautious.

    When I asked the doctor about the tics she said that she is not prepared to make a diagnosis. She asked him several questions and was fascinated by how smart he is. The diagnosis test that she wants to run is an IQ test that is given by a psychologist at the school. I am stunned at this because this does not help him in any way and we already know that he is smart. The waitlist for this test is approx 6-9 months and then he has to have the test, then have it graded, then meet back with the ped, therefore we probably won't see the ped again for about a year to a year and a half.

    I feel that it was all for nothing. We don't have a diagnosis and I don't know when we could possible get one.

    What did I do wrong. How could I have helped him more? Does he have to have this test? I don't want him to have an IQ test because if they find out how smart he is then they would put pressure on him to do more.

    How can I help him now? Steph

  5. #5
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default No Diagnosis

    Steph

    It sounds like there is more to it then just an IQ test. You see I went through this with my son.

    Testing for the IQ level is only part of the test. They look at motor skills, maturity levels, response times, vocal skills.
    My son had tics and twitches the entire time and they were recorded. He showed ADHD concerns, they recorded that.

    Granted my son does have a high IQ and does not take his grade courses in some subjects, but he is more successful now being able to be around others his own age and staying stimulated with his school work. Before when he was younger he was bored and wanted to play while others worked, he got into a lot of trouble in class. At one point he just refused to do most of the work.

    It took nine years for my son to receive a confirmation on his TS diagnosis. He was even expelled from a school for his behavior in 1st grade and no one clued in.

    It sounds like your Ped is trying to plan this out to benefit your son.
    Keep journaling, keep the school informed that you are still trying to confirm diagnosis and you need their support.

    Children understand the difference between "might" & "do"
    My son experienced less stress, less extreme motor tics once he understood that we were trying to get a diagnosis and it could be TS.
    All the little things that bothered him were like TS.

    The main thing was that he no longer felt out of place or odd once he understood there could be an answer and that I was not giving up until we had one.

    He obtained two years experience in managing those tics before diagnosis and his problems resolution skills have developed rapidly to help him manage in school settings.

    As mentioned before, the road is long and hard for most of us to confirm diagnosis and most of the time as a mother we feel we did something wrong or did not get our point across in those precious moments while sitting in the Dr. office.

    It just does not fall into place like you would want. The process is long and your patience will be taxed. But it sounds like you are in good hands.

    If your Ped works with TS or multiple disorders in children they will take very good care of you in the long run. Just because you have to wait does not mean you can not keep her office informed of any concerns or problems at home or school.

    Hang in there..
    PJK

  6. #6

    Default No Diagnosis

    Hi, PJK could you please tell me everything that you can about the test that includes the IQ test.

    Can the forum have a poll asking people how long it took them to go from the point when they think something is wrong with their children (or them) to the point where they have a diagnosis. Steph

  7. #7
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default No Diagnosis

    Steph:

    What I described is what happened to us in connection to the test. The process can be done over one day or several.

    A lot of people with younger children do not have a diagnosis for at least a year after monitoring the tics. Others much longer.

    The problem is there is no specific test to determine TS. There are others out there to rule out other concerns so it is a trial and error process for most of us.

    Has your Doctor considered any other tests such as lab work or scans?

    She maybe focused on TS or TS+ by going for the IQ test first. Hard to say and my opinion is one of a Mom that has gone through the experience.

    Sometimes the ADD portion can be misunderstood by pure boredom in class because the child is so far advanced compared to others in class. My own brother and even I went through this years ago.

    Instead of moving a child up in grade levels they center programs directly to the skill level of the child and keep them in their own grade so that they can be around other kids they can relate too.

    You will find in time there are others out there like you son that need the same programs and attention. The kids relate better to each other and develop their maturity level at the same time.

    I can see were your Doctor is going with this for this reason and from our experiences. My son is so happy now that he is being taught at his own level and it does not represent more work or pushing him to excel, it just equals where he really is academically. Although he has ADHD he stays focused on his work now and the TS symptoms are not as noticeable since the stresses are not there as much anymore. The classes are smaller and the attention is focused on them not their conditions.

    The request for a poll is a good idea and one we can consider. I am not sure if the results you are looking for will surface though since every case is a bit different and age factors have to be considered in a poll like that.
    PJK

  8. #8

    Default No Diagnosis

    Hi, The ped ordered no other tests. I am glad that you can see where the doctor is going with this because I am at a loss. It will just be so long before we even have that test done and this is just for his ADD and nothing for his TS. Steph

  9. #9
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,906

    Default No Diagnosis

    The ped ordered no other tests
    Armed with what you now know, can you call the doctor to ask what is the plan to arrive at a diagnosis. If the doctor has no plan, it could be he/she does not have the clinical expertise in this area.

    You could ask for a referral to a specialist such as a pediatric psychiatrist or neurologist interested in movement disorders.

    Have you been in contact with a local Tourette support organization who may be able to point you to a known specialist?

  10. #10

    Default No Diagnosis

    My son has never had an IQ test but I have wondered about it. Who does this, the school or the doctors?
    As for the poll info, we noticed problems in the fall of 2004. He had developed habits. In Dec /04 our doctor mentioned TS. From there till now, we had 4 neurologists and 4 psychiatrists,all who agreed it may be TS, but for his voices, they wanted to rule out a mental disorder such as sz. We did MRI, EEG, Sleep EEG, blood tests. Then we started drugs. Risperdal helps with his habits or tics, we just had to work on the voices. Finally in Dec/05, after months being on the waiting list, we went to the Tourettes Clinic at Toronto Western and my son was diagnosed with TS and OCD for the voices. In Jan /06 we did one last hospital stay at Sick Kids for 2 days EEG to rule out epilepsy and seizures.On Thurs. Feb 0/06 we started my son on Prozac, which the clinic feels is the best drug for him along with the Risperdal. All this started in my son's end of his 14th year. He turned 16, 2 months ago. Since then it is trial and error to find the right med. So in all, this took almost 16 months of doctors, psychiatrists, tests, hospitcal stays and medications, some that worked and some that didn't. I actually feel hopeful now that I have a diagnosis. I am over my stigmas, such as Prozac. And my son says he feels great knowing that it is almost over. I hope this is the right med.
    Hope this helps
    Rose

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