Questions for Paediatrician

[heidispidi]

Our 2nd paediatrician appt is this Thursday and I would like to be as prepared as possible. From the 1st appt, he told us to ignore the tics, he ordered a blood test to check her thyroid (which was fine), and he wrote a note to her teacher asking for some input.

 

Here are the things I would like to discuss with him, but can you think of what I may have missed, which would be good to ask regarding my daughter's tic disorder?

 

* Blood test results - nothing showed up in the initial testing, so what else should we be testing for?

* If this is genetic, as her father and cousin have had what I would deem minor tics during their lives, why are her tics so much worse than theirs?

* Will it go away???

* Does she require medication?

* Should she be seeing a child psychologist? (in my opinion, yes)

* Should she have the 2nd half of the swine flu vaccination? (in my opinion, no)

* Are her terrible temper and extreme mood swings related to the tic disorder?

* Should I be removing certain foods from her diet now, or waiting until testing is done for sensitivities? Is the doctor PLANNING to test for sensitivities?

* Would it have been the swine flu vaccine OR the stress she was under from her father that triggered this increase in severity in the tics?

 

TIA for your input. This wait to get back to the paed has been so hard on me. I found myself in tears on and off all day at work on Thursday, so took Friday off to help me relax. Which was fine for the weekend but here I am, Monday morning, at work, feeling exactly the same as Thursday. If I'm feeling this bad, I wonder what my girl is going through?

[Chemar]

hello

 

before anything I do want to also mention that any suggestions we make may be brushed off by the pediatrician as many (most?) conventional doctors do not know or accept that there are other causes for tics than they were textbook taught years ago in med school. Usually it is the Integrative physicians (conventional MDs who have specialized in alternative/complementary/naturopathic medicine that are clued up on these things, including many DAN (defeat autism now) docs

 

we have a pinned thread at the top of the board where you will find links to some helpful info re testing etc

http://www.latitudes.org/forums/index.php?showtopic=2459

 

re your specific questions

* Blood test results - nothing showed up in the initial testing, so what else should we be testing for?

 

blood tests that are a good idea are

for antibodies to strep or other infectious agents, including candida albicans and mycoplasma p

baseline results for vitamin and mineral levels so you will know if deficiencies exist

more are in this thread

http://www.latitudes.org/forums/index.php?showtopic=755

 

 

 

* If this is genetic, as her father and cousin have had what I would deem minor tics during their lives, why are her tics so much worse than theirs?

 

the theory is that some "trigger" is responsible for the way the tics manifest. could be the vaccines, infections, allergies (food or environmental) etc etc

 

* Will it go away???

million $ question.

no one knows

for some people, resolving the triggers causes the tics to go into remission. sometimes tics are "transient" and resolve on their own. In TS usually the tics never go away completely, but can get much better with effective treatment and increased age--the hormonal years of puberty are known to be associated with most tics

 

 

* Does she require medication?

not unless she is severely infected and needs antibiotics, or possibly if the tics are so bad that she cannot function

Our personal experience with meds was that it brought side effects that were worse than the tics

* Should she be seeing a child psychologist? (in my opinion, yes)

a good psych can be helpful, especially for Cognitive Behavioral Therapy, but also be careful on this until you know WHY she has her symptoms...

* Should she have the 2nd half of the swine flu vaccination? (in my opinion, no)

in my opinion NO also! http://www.latitudes.org/forums/index.php?showtopic=1564

* Are her terrible temper and extreme mood swings related to the tic disorder?

more than likely. If she has PANDAS or PITAND then the inflammation caused by the microbes results in these extremes of mood/behavior

If genetic Tourette Syndrome then yes, there can be mental health issues that manifest along with tics as part of the TS spectrum

 

* Should I be removing certain foods from her diet now, or waiting until testing is done for sensitivities? Is the doctor PLANNING to test for sensitivities?

as mentioned above, most conventional docs do not recognize the connection between tics/mood issues and allergies or sensitivities. but doing your own food elimination tests to determine what she may be reactive to is a good idea http://www.latitudes.org/forums/index.php?showtopic=794

 

* Would it have been the swine flu vaccine OR the stress she was under from her father that triggered this increase in severity in the tics?

absolutely could have been either or both

 

hope that helps a bit

once you go thru the threads I have linked, dont hesitate to ask questions if needed

 

hope you get clear answers so you can begin effective treatment

[heidispidi]

Well, got no answers from the paed. His 3 options were to either:

 

(1) medicate

(2) child psychologist

(3) do nothing

 

I've gone for option (2), as there is no way I want to medicate my otherwise well-functioning daughter.

 

Hopefully the psychologist can help Jaymi work through her anxiety issues. Before her appt yesterday, I broke the news to her that I would be taking her to Disneyland in January (a big thing seeing as we live in Sydney!). She started off all excited, then started to worry, within a few hours. What if we don't actually go? What if Disneyland isn't as much fun as we expect? What if the (17 hour) flight is too long and boring? Not the 'normal' reaction for a 7 year old, I don't think.

 

Let's hope the psychologist doesn't have TOO long a waiting list.

Edited March 18, 2010 by heidispidi

[Chemar]

Hello Heidi

 

well, welcome to the club of those of us who have gotten those kinda responses from many "conventional" MDs

 

it wasnt till I started only seeing physicians who are Integrative ( ie Conventionally trained MDs & DOs but specialized in Complementary medicine too)

 

My experience with my own son and psychologists was try to find someone who is trained in Cognitive Behavioral Therapy (CBT) and maybe go for the first appt alone to "interview" the psych yourself first! JMHO but last thing you want is one we encountered who wanted to mold my son into what they thought someone with TS should be (they had TS themself) and were the ones who convinced him that Haldol would be the only thing to help him

 

once you are satisfied with them after that first visit, where you will also be able to give some background in private, so as not to upset your child who might misunderstand some things said about them...kids are so sensitive and often "blame" themselves when they feel their parents are worried about some aspect of them, and can then sometimes internalize more. My hubby with TS did that as a child......

 

you are wise to wait on the meds I think, as there is always the risk of side effects, sometimes worse than the tics etc. as we discovered the hard way ourselves with my son.

 

lots more you can try along the natural way, while you try to get a good psychologist helping too.

 

maybe see if you can find an Integrative Doctor too. Sometimes those with DO are more open minded to alternative treatments than MDs. and often they are "in network" so covered by Insurance too, which some alternative practitioners are not

Edited March 18, 2010 by Chemar

[heidispidi]

Just a quick update on how my daughter is going.

 

There was a 7 MONTH wait to get into the child psych recommended by our paed. October was the earliest we could get in. I've since been provided with the names of 2 other 'good' child psychs in our area, who I will chase up this week. Her tics aren't bothering me so much (unsure whether they have lessened due to the magnesium supplement she's taking, or whether I'm just noticing them less b/c it's so common?). I seem to notice it mostly when she's excited right now. It's still that one hand that is her biggest/most common tic.

 

Early next month, her father will *possibly* be able to fly down from Brisbane to Sydney to visit her for A DAY. If you remember, this is instead of her flying up on her own to visit him, missing my b'day and Mothers Day - pretty much, IMO, the cause for her tic explosion 2 months ago (unless it was the swine flu vaccine which she got the same day, we have NOT gone back for the 2nd jab). Will this 1 day visit do more harm than good??? Hey, 1 day out of 365 is better than her not seeing him at all, right??? (He and I get along just fine, except for the lack of visit time they have).

 

Her temper/mood swings are the main reason I'm taking her to the child psych. I really feel that I most need to work on her anxiety/worrying/stress etc, if we are to have any hope of getting her tics under control. She is absolutely fine at school, behaviour-wise, but the minute I pick her up most days after work, she usually explodes. Her teacher suggested that maybe she is just on ultra-good behaviour while at school b/c she knows she has to be, then the second she doesn't 'have' to hold it in, she lets rip - at me, b/c I'm there. Sucks for me, but my getting angry with her won't (and doesn't) help.

 

I'll fill you all in on how we progress, maybe a monthly update, if I have nothing to say sooner. Take care, all.