Tourette's Diagnosis & frustrated with doctors

[acat]

Sorry, I am looking for an opportunity to vent anonymously. We took my 9 year old daughter to a pscyhiatrist yesterday to treat her Tourette's Syndrome. The doctor at first ignored her Tourette's and focused in on her anxiety issues (which we were not there for . . .she recieves therapy for this from a social worker). He insisted we put her in school because that was the "only" thing to do with anxiety "according to the literature." This is a totally insane idea due to the severity of her Tourette's. Nevertheless, he succeeded in undermining my confidence. She has very mild autism and he attacked us for not having her in a special autism program. (Again, we were not there to address her autism which is mainly sensory issues at this point). We had talked to several professionals about an autism program for her and they felt it was overkill. Why is it not OK for a child to be silent and nervous around strangers? When I was a child it was called shyness. Today it is considered a deviation that requires medication and drastic intervention. Is there no appreciation for individual temperment and personality anymore? Yes, we are going to search for a new doctor as soon as we get on a new insurance plan. Thank you so much for letting me unload. I am also open to any suggestions you may have for dealing with doctors and Tourette's.

 

Andrea

[mommaduck]

:grouphug:

[amo_mea_filiis.]

I personally have to be firm with many drs, and if they can't think outside their little box, we drop them.

 

I don't know much about tourette's, but I'm sure the first course of treatment is tons and tons of research on your part.

[amo_mea_filiis.]

When my son was 8 months old, an early intervention evaluation told me that he was severely delayed in his motor skills and even language delayed. I accepted that he wasn't "delayed enough" and never fought for therapies. I didn't know that his medicaid would have paid for physical, occupational, and speech therapies. I didn't know that I was supposed to be pushing Drs to pay more attention to all issues.

 

Before he had any expressive language, he'd cried when I changed his diaper. He had always had GI problems and was rashy, so I assumed it was the rash. An urgent care Dr (unrelated to rash) gave me a great treatment for his tush rash and it worked wonders. Rash was gone in 2 days. But he was still crying with diapers. It turns out it wasn't his butt! His ped tried lifting his legs like she was changing him and he screamed. When asked where it hurt, he pointed to his head. She shipped him off to a peds ortho who looked at him, agreed there's a problem, and ran some bloodwork. He said things like celiac disease can cause pain and inflammation. When the bloodwork came back normal, ortho had no other ideas.

 

A few years later, he was complaining of left knee pain. The poor kid was 3 years old, very fit, yet always complained of his knee. New ortho passed him off by saying his brain was too active for his body!

 

Over the years he received diagnoses of autism, sensory problems, ADHD, obsessive compulsive, oppositional defiant, badly parented, etc. No one ever addressed his motor problems more than saying it was sensory related.

 

He was recently seen by a children's hospital. His new ped (we moved a year ago) wasn't interested in looking at everything and kept saying he was fine. I demanded enough and got the go ahead for children's.

 

Not only is he not perfectly typical, everything *I* suspected with him was right. It's possible that he doesn't even have ADHD, and his sleep really is that bad.

 

Part of my son's journey just to tell you to be confidant in everything you do, and stay firm. She's YOUR kid. You spend all day with her, not Drs that dismiss you. If one doesn't work, find another, and another, and another!

 

And because I've been accused of it (munchausen by proxy), keep detailed records from ALL specialists. If someone ever attempts to accuse you, you'll have all records and will never deny that she's seen multiple Drs.

[mchel210]

My children personally do not have this issue...BUT...a friend of mine has been dealing with this for a while with her 10 yo. I can tell you what she claims works for her child.

 

She has him on a very strict diet. I believe it is the feingold diet or something very similar. She was following that since it was the easiest to find information on according to her. She limits all diary, red meats, yogurts, sugars and tons more.

 

She also had started a high Omega 3 daily. Her son eat the frozen one that is like a gel.

 

She claims he is another child. He is calm and doesnt have any problems with his tourettes. Now...she does allow him to go off the diet at times when she is on vacation or whatever. BUT>..she said everytime he is off...he goes right back to having tons of issues with the tourettes and adhd. She claims he does not need any medical intervention when he is on the diet and omegas and it works wonders for them. I think that was her first path since the drs. wanted to immediately put him on meds and she said the research showed they had been extremely harsh drugs.

 

I hope you find something soon that works for your family.

[Stacy in NJ]

I'm not surprised that a psychologist would focus on the anxiety. They typically DON'T treat TS. TS is a neurological disorder and is treated by a neurologist. Why did you choose or get referred to a psychologist in the first place?

 

ETA: Sorry, I see that you went to a psychiatrist rather than a psychologist. Psychiatrist have basically nothing to add to or do with a TS diagnosis.

[Dobela]

I'm not surprised that a psychologist would focus on the anxiety. They typically DON'T treat TS. TS is a neurological disorder and is treated by a neurologist. Why did you choose or get referred to a psychologist in the first place?

And this is why people end up with crazy mixes of diagnoses and medications. They see a wide variety of doctors for the same issue. Few if any of the doctors across the specialty lines will communicate or take into consideration the input of someone outside of their specialty area. It is like the blind men describing an elephant when they are all touching different parts of the same elephant.

[acat]

The psychiatrist was the earliest appointment we could get. I was told psychiatrists are qualified to treat Tourette's. We were looking at September for a neurology appointment. We plan on seeing a neurologist of our choice as soon as we change insurance plans. We followed up with a pediatric development specialist this morning. He was not in favor of medicating her at all (unless she is bothered by them and amazingly she is not). He offered us several medication options and did not have a problem with homeschooling. Thank God there are some doctors who don't think they actually ARE God!

 

I'm not surprised that a psychologist would focus on the anxiety. They typically DON'T treat TS. TS is a neurological disorder and is treated by a neurologist. Why did you choose or get referred to a psychologist in the first place?

 

ETA: Sorry, I see that you went to a psychiatrist rather than a psychologist. Psychiatrist have basically nothing to add to or do with a TS diagnosis.

[Misty]

My oldest daughter was diagnosed with Tourette's and OCD when she was 8 years old. She is now free of both after going gluten free and dairy free. These foods cause neurological and behavioral issues in children who are sensitive to them.

[Julie of KY]

Hang in there. It can be hard to find the right doctors for your situation.

 

I have a son with Tourette's and a daughter that tics worse but hasn't yet ticced long enough for a Tourette's diagnosis. We've been going to the Tourette's clinic through Cincinatti Children's and have been very happy. We've been working on CBIT through the neurologist office and we're set up to see a psychiatrist that works with all their hardest Tourette's patients.

 

Feel free to private message me if you want any specific info from me or just keep venting and working on finding the right medical care for your child.

[acat]

Interesting. Almost our entire family is gluten intolerant/celiac. Wonder if we should remove dairy too? Our acupuncturist said most kids can tolerate dairy, but it could make her particular pattern worse.

 

My oldest daughter was diagnosed with Tourette's and OCD when she was 8 years old. She is now free of both after going gluten free and dairy free. These foods cause neurological and behavioral issues in children who are sensitive to them.

[Misty]

Interesting. Almost our entire family is gluten intolerant/celiac. Wonder if we should remove dairy too? Our acupuncturist said most kids can tolerate dairy, but it could make her particular pattern worse.

 

Wouldn't hurt to try.. We've tried to reintroduce dairy a few times, but she always starts having tics again. We don't dare experiment with gluten though as it is extremely destructive to our family.

[KatDilan]

:grouphug: