Utterly Frustrated

Katie - posted on 05/11/2010 ( 4 moms have responded )

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My son goes to the neurologist this Thursday. I have been a little anxious about what to expect, but also excited to get some answers. Now, I am just utterly frustrated. Right now his main tics are popping his jaw, knocking his knees together, humming, and throat clearing.

A little background: I split up with my children's father when my son was only an infant. He has had on again/off again once a week visits (about 4 hours) with Dad his entire life (lately its been on for the last 6 months or so at least.) Dad was diagnosed with a psychiatric disorder as a child and dragged through countless medications with numerous unpleasant side effects. He now has a strong anti-diagnosis and anti-medication attitude.

Dad is very against admitting there is something different about Tony. He intends to exert his legal right to be involved in medical decisions, so he can come to the appointment to convinve the doctor there is nothing wrong, that Tony can stop whenever he wants, and to sabotage any progress which could be made.

I have never said he couldn't be at the appointment. I have involved him in the entire process, getting the referral and filling out the intake paper work and family history together. But he has slowly crushed my hopes by repeatedly saying he wants to go only to hear and tell the doctor Tony is fine. I have tried to coach him that we are the parents and the doctor is the doc and that our job is to provide him what we know about Tony and ask him questions about his opinion, to no avail. I have assured him, even if it is TS that it's not a bad thing just a different thing and with the mildness of Tony's tics that medication would not be part of the plan.

If his lack of cooperation wasn't bad enough, as part of this whole dilemma, he is bound and determined to stop the tics before the appointment. He has been telling Tony if he doesn't stop popping his jaw that he will dislocate it and will never talk or eat again, followed by a what did I say about that with every subsequent tic which led to a major tic outburst. Also told him, if he kept knocking his knees they would become so bruised that he wouldn't be able to walk.

My poor kid who had been in a 2 to 3 small bursts of tics per minute lull, was nonstop ticcing after his visit with his father and extremely stressed out. My frustration level is through the roof!!!

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Katie - posted on 05/13/2010

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Thanks everyone. We got through the appointment today. I got a lot of questions answered. The doctor said he fits all the criteria for TS, but wasn't quite ready to make the diagnosis just yet. Sent us home with a few parent and teacher pamphlets about "What is TS" and "What can you do to help out your kid/student with TS" .



Dad didn't make any scenes in the doc's office thankfully. I tactfully brought up the topic of asking Tony to stop the tics (doc cringed and dad def saw that) so the doctor would talk about the fact we should ignore them. Dad, in turn, added I will tell him to stop if he's hurting himself, to which the doc replied "Well that's different." But the doc also said the jaw popping and knee clacking were pretty harmless.



I felt great about getting some of my questions answered and felt like Dad heard some things that might help him out. But then when we got to the car Dad's selective listening skills reared their ugly head, "I'm actually glad we came today. I found out there's nothing wrong with Tony and I can try to get him to stop before he hurts himself." My heart sank, I wondered if we had really just came from the same doctor's office.



I'm hoping it was an emotionally charged comment and as he processes the doctor's comments and the reading material the doc gave us that he'll lighten up a bit. Thankfully Tony's sister really sticks up for him and isn't afraid to report back on what happens at Dads.I guess we'll be working through this visit by visit.



Go back to visit the neurologist again Sep 1st. I'm thinking of just not mentioning it once between now and then. Hoping maybe if I don't bring it up, then Dad will not remember or feel the need to go.

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I would suggest you call your son's neurologist today. He needs to know what you are dealing with here. You need to tell him the exact comments your ex said to your son. I don't want to scare you, but we have two kids in our TS support group who have dad's just like this. Complete denial and they have been told they aren't "allowed" to tic around them. Both boys have been suicidal due to their horrific stress that this has put on them. A few months ago the 10 year old attempted suicide. Please make your doctor aware of what is going on.

You sound like an awesome mom! Remember, you are your child's advocate. Don't ever give up fighting for his rights. If it gets really bad, you can bring the neurologists diagnosis and your ex's comments before a judge. I can't imagine he would allow him to have medical rights over your son's care after hearing this. I also can't imagine what it is like for your son at your ex's house right now. Remember it is your son's well being that is most important here.

I'm sorry you are having to deal with this. It is tough enough having a child with TS. Hang in there!

Dana - posted on 05/12/2010

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Katie, My mother's reaction was similar to your ex's. I knew what my son had a year before I had taken him to the neurologist, but the whole time my mother kept saying there's nothing wrong with him and he'll grow out of it. Only when I did take him to the doctor and the diagnosis was confirmed did she accept it as being true. It sounds like your ex's experience has left him with a negative outlook on doctors and medicines, maybe because he had a doctor that wasn't the greatest. I know from experience you don't always get a great doctor from the very start. We went through 3 neurologists before we found one that we clicked with. Maybe after he hears the doctor explain what it is and all the details, he'll accept it. I'm hoping for your son's sake that he does come to his senses. He needs to understand that all his negative talk to his son will only make things worse, that what he really needs is to feel love and acceptance from his father. I wish you luck and my heart really goes out to you and your son.

Leslie - posted on 05/12/2010

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If your child has TS, no amount of arguing by your ex will convince your neurologist otherwise. Once the doc is on your side, your ex will have to accept the diagnosis and stop doing things to antagonize its symptoms. When I first read your post, I felt so upset for your child that it almost made me cry...I think most of us have been through similar situations either with a parent, sibling, classmate or teacher...Someone has admonished our kids for tic-ing.

I took some time to think about your situation before responding...I think your ex is reacting the way many parents do when they are told they there is something different about their child...They try to fix it, ignore it and hope it goes away. Anything to make it not true. And it is especially understandable, considering his background. I would include him as much as possible in the process of diagnosis and treatment and give him the opportunity to understand. If in time he doesn't accept the situation as it is and become more supportive, you will have no choice except to stubbornly defend your child. Unfortunately, mothers of kids with TS have to become advocates for our kids in all situations. We have to protect them by educating others and when those people refuse to respond the way they should, we have to do whatever we have to do to make the situation better, even if it means taking the child out of that situation.

I hope that the support of the neurologist will be enough to make your ex understand...and I hope that whatever treatments you choose, that you will be open-minded and do what is best for your child. I am a huge fan of occupational and behavioral therapy...but unlike many outspoken anti-drug Moms, finding the right meds has been life-changing for us. My daughter's tics are mostly complex tics that appear like controlled movements...resulting in frequent admonishments from others, and horrible teasing...which only increased the frequency and duration of the tics. When her tics started causing her physical harm, I had to consider medication. It is horrifying to put you 8 year old on blood pressure medication! But it helped. And when they developed Intuniv ( which is the time-released form of the same medication ) it has literally changed her life. Middle school is hard for everyone...but it has been especially hard for her, and I thank God for the right doctors, therapies and meds.

I'm sorry that I have rambled on... Best of luck with your appointment.

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