How do you know for sure what the trigger is?

[Motherof3]

Hello, 

I am not really sure what I or my family are doing. Exhausted is a feeling that seems normal to us now and we just started researching about tics in December. We are in the process of doctors and diagnosis’ and I am reading the book “Natural Treatments for Tics and Tourette’s “ My son is 9 and started with tics in September of 2017, long story short he went from vocal to excessive eye blinking to stomach spasms to now he has days where he can’t sit up straight or walk without it happening. We are getting a referral to an infectious disease specialist to see if he might have PANDAS. While doing all this we have eliminated his artificial color and flavor, sugars, dairy, gluten. We aren’t perfect still learning the terminology to these items, but we are trying to find triggers.  Are we removing too many things at once? What is a reasonable time frame Between taking things away and then reintroducing them? How long do you wait for a reaction? Will a reaction happen immediately or within a few hours? Do you have to test it out more than once to know for sure it’s a definite trigger?

I have ordered the Failsafe cookbook because we have no clue what to make that doesn’t have any of the afore items I just mentioned above. Please any advice is welcome or organization of what to take away or add, ideas for snacks...etc.

As to environmental, we have always used skin sensitive soap, Johnson’s baby shampoo, I did try a sensitive detergent but he broke out weird I know, but we went back to what we always used. We are going to borrow a friends steam cleaner for the furniture. Any other ideas?

I am only at chapter 8 of the book so if there is a chapter that has the answers to these questions please let me know.

Thank you so much for any help.

 

[Sheila]

Hi motherof3, we are glad you wrote and welcome to the Forums. What is the date for your PANDAS evaluation?

It sounds like you have already started some key dietary efforts. Even when PANDAS is involved, it can be helpful to avoid potential triggers as you figure things out. It takes time to get accustomed to different terms, like additives. Just do the best you can at this point and look for foods with simple ingredients.  The Failsafe cookbook will avoid salicylates, which may or may not be an issue for you. 

I raised 3 kids, one with Tourette's, and know you have your hands full. Trying to figure out triggers adds to your stress, I know.

Have you been able to keep a detailed log with what is being eaten and how symptoms are--as well as other exposures? That can be the key, because you can be closing in on some triggers when other issues come in and confuse things on a day to day basis.

You mention sensitivities to a detergent -- it seems an allergic issue could be part of the picture. Is your family allergic -- and has anything changed in the last several months? Like a new location, renovations in the home, different school, new pet, etc?  Steam cleaning furniture that needed it is a good idea (without scented products, as they often use!) 

When looking for triggers, it can be helpful to see a naturopath or doctor who understands this type of approach and is familiar with nutritional approaches that can support the nervous system. It can be difficult to go it alone. Is that a possibility?

Sometimes there is a significant underlying problem, whether an infection or allergic reaction, or nutritional imbalance that is tipping the scale. Could you let us know a little more?

 I apologize for the late response to your note!  I look forward to hearing back from you, Sheila 

[Motherof3]

Hello thank you for responding. Our appointment with the infectious disease specialist is today. To answer some of your questions we are keeping the log and have kept a log since the end of December beginning of January. As to Allergy Testing he did have an allergy test back in 2015due to breaking out in rashes a lot which ended up being major eczema however when I went to look at his records they have not put his allergy test results in his record so I'm in the process of signing release forms and getting those results. We are scheduled for a second opinion at a different hospital just because we want to make sure we're doing everything we can. We have steam cleaned the furniture carpets even our hardwood floors the only thing we haven't done yet mattresses which we are working on getting those steam cleaned.

Nature path I'm not sure if I can find a doctor like that we are waiting to see what these results are and then possibly see if we can get referred to a nutritionalist and maybe an environmentalist physician. We at one point thought he might have a magnesium deficiency and requested that our doctor please test him for this she did and it came back that he was actually over the suggested amount that he should have but extremely minimal the doctor didn't feel that it was a problem. We do know that stress is a definite trigger while testing at school which his school is very aware of everything we're going through right now the teacher noticed that he couldn't seem to control his leg while testing and seemed very frustrated or nervous anxious about the test so they have a secret hand signal in which he can leave the room and doesn't have to ask and he went to the nurse's office and was there for about 20 minutes until he was finally able to calm down and de-stress so we do know stress is a trigger. We are video recording his tic movements and vocals and I have all those on my phone that I keep with me readily for doctor visits. 

I feel I should clarify that I am a mother of 3 however two of my children are in their early twentys and my youngest is 9. I don't want to confuse anyone with my user name or create a misunderstanding. My oldest two never did this. Thank you again for any help and your time.

[Sheila]

It's great that your son's teacher has developed a secret hand signal for him to leave the room to calm down. And I see your note about two of your kids being in their 20s.

What did the infectious disease specialist say last week?

A national organization had some trigger suggestions for eczema, which you said you were dealing with. It's a good reminder to go natural throughout the the home, not just with personal products.

For the mattress, after you have it cleaned, Amazon carries hypoallergenic covers that can be a help (other stores have them as well). Most comfortable ones have cloth material on the outer layer.

Looking forward to hearing back, Sheila

[Motherof3]

Hi Sheila. Well the infectious disease specialist said that they didn't feel he needed to be tested that within the last five years there have been conclusive studies that tic disorders are not associated with pandas. She felt that he was a healthy boy other than the tic disorder and that she didn't understand why the Peds neurologist would send us there with the studies that have been done. She did notice that we were disappointed in her answer she did encourage us to keep our second opinion appointment with the Peds neurologist in May that we have.

I really don't know what else to say about that visit other than we were frustrated and disappointed.

I will definitely have to look into hypoallergenic sheets I hadn't thought about that before that is a good idea.

Thank you for getting back to me I know you are very busy and appreciate that you took the time.

[Chemar]

Hi

I am sure Sheila will respond as soon as she gets a chance but did just want to say that the infectious disease specialist didn't give you accurate information. I am by no means clued up on it,  and don't know what studies they were referring to, but I do know that kids with PANDAS/PANS can and do frequently have tic disorders as part of their symptoms, or as an additional co-morbid condition.

That said, not every kid who exhibits tics has PANDAS/PANS. There are many varied things that can be underlying tic disorders, and they are not all mutually exclusive.

That's why keeping a journal/log is so valuable in trying to find what sets the tics off, and what calms them.

It may really be best, if you feel there might be a chance of PANDAS, or PANS, or at least want to rule it out, to see a specialist who actually knows about this and will run the kinds of tests that are documented. The parents on the PANDAS/PANS forum here might be able to give more info?

I hope that helps a bit till you hear back from Sheila.

 

[Sheila]

Thank you for your response, Chemar. I agree with everything you said. It is unfortunate that there is so much misunderstanding and misinformation about this topic. Confusion might be a better term in many cases, and there is not an answer that fits everyone. But most on this forum would agree that the doctor should have pursued it, if nothing more than to rule out a possible connection.  Yes, it could be good to post your situation  on the PANDAS/PANS site on this forum if you have not already done so. Please let us know how everything turns out or if you find new answers. 

Glad you can get mattress dust covers -- they make them for the mattress and for pillows.