What to do next?

[Genevieve81]

Hi everyone,

So I've written a couple times about my daughter who will be 5. She woke up one day with severe head jerking and a weird stomach tic. She did have a really bad fall down our steps about a week prior. We have no family history of tics or Tourette's. its been 10 months now.Two neuros have looked at her and said we have to wait it out. I did get one to do some blood work to rule out pandas, mono and lymes. All negative. And neither said the tics could be from the fall. So the tics started with head jerking and the stomach tic, then replace it with arm jerking then down the leg with a leg lift every couple steps, all on the right side, and almost always happens in threes, two months in February and March with pretty much nothing, she was sick a lot which when she's sick she seems to have no tics at all. Then all of a sudden back up to the neck with a jerking movement to the right every couple of seconds, now to be replace with a severe eye roll to the right every couple of seconds now the past two days with the eye roll a head tilt with it to the right.

I feel like the tics are traveling up and down the right side of her body, but only seems to be one at a time.

 

So my question is where do we go from here??? We currently had food sensitivity testing done with a osteopath and she's having cranial work done and have eliminated all food for two weeks, which she was already dairy and gluten free since the beginning. we are also looking into seasonal allergies, we do supplements, salts baths, all organic, change our environment completely, all natural and green. And nothing seems to be working. I can't seem to find any triggers at all. Besides stress and she's seeing a phsyocoligst for that. I'm torn as I am spending so much money for everything. Should I seek homeopath, neuropath, environmental physicians ect...... I really feel like there's a underlying issue she has gut issues as well, bad stomach pain everyday with cycle vomiting every four weeks at the same time at night, which has gotten a lot better. Should which direction should I go. Which kind of doctor can help me the best. We live in delaware and have easy access to Philly and Baltimore. All suggestions would be greatly appreciated. I'm so sad and scared to where this is going to turn into. Please help

Thanks for listening

[911RN]

Has she had strep titers that were normal also?

[Chemar]

Has she had strep titers that were normal also?

 

I see that genevieve81 did state

 

Two neuros have looked at her and said we have to wait it out. I did get one to do some blood work to rule out pandas, mono and lymes. All negative.

Genevieve, the gut connection to neurological problems is very real and more information keeps coming out about that! So yes, always worth investigating that further.

 

I am assuming the neurologists did scans etc to be certain that the fall has not triggered something?

With the tics appearing to be occurring only on one side of the body, and starting after the fall, I would really investigate that further.

[Genevieve81]

Yup all strep came back negative, and strangely enough I had her at the doctors the week before cause she was complaining of her throat that's why I had the testing done. And also no both neuros and ped told me that what happened from her fall wouldn't cause the tics. And also because she passed the testing in the neuro office that they wouldn't need to look further into that. Which I don't believe and have asked them repeatedly to do a MRI or something and they said there's no need to put her through that. Very frustrating!!!!!

[Chemar]

Do you know what specific tests were run for PANDAS/PANS to be considered "negative"?

[Genevieve81]

Chemar, I'm not sure if I'm saying it right aso strep titers. She said it looked like my daughter was never even exposed to strep before cause the numbers were so low.

[TeamTyrion]

Hi Genevieve,

I noticed you mentioned her being on supplements and salt baths. Just wondering if there's something even in there that she may not tolerate well. My son cannot tolerate salt baths at all. And many people on these forums have mentioned tic reactions to supplements. Common tic triggers are probiotics and fish oils (which are great if you can tolerate them, but for some reason can be "too much" for our little ones). It may be worth experimenting the removal of all of them, then very slowly re-introducing one at a time. See if there's any improvement after the removal of these.

 

In general, supplements should be introduced one-at-a-time, very slowly and at low dosages "the low and slow" idea. If no adverse reactions after a couple of weeks, then add another one, etc., etc.

 

Hang in there!

Edited June 4, 2014 by teamtyrion

[Genevieve81]

Yes have introduced supplements very slowly starting with magnesium, then flax seed oil, vitamin c, then b complex. I took her off raw probiotic two weeks ago when she her food sensitivity test came back with strawberry and bananas sensitivity. I'm just now trying to find a good one. And I did take her off salt baths For about two weeks a little while ago. But restarted again. I'm also working with phscolgist because her anxiety is through the roof and they say that could be one of the reasons why she has tics. Not really sure what to believe. Or where to turn.