Breathing Tic or Breathing Problem

[SharingSheryl]

HI There,

I am struggling to determine what exactly is happening with my 6 year old daughter. 6 months ago we began allowing her to watch netflix show in our cell phones with headphones and I noticed she would regularly stop and bend her head up towards the ceiling. It seems like she was stretching her neck so I figured it was related to the headphones and funny angle. Then 2 months ago all broke loose at home when our family business was put through the ringer. Her father and I completely checked out while we worked around the clock and she began spending all day on the computer keeping herself busy while we tried not to loose our company. It was highly stressful for all. During this time she developed a breathing thing, where she would breathe out forcefully. It has grown over time into this full blown breathing habit/issue? It happens all day, most  every day. She forcefully pushes breath out 1-6 times in a row at approximately every 10 seconds-10 minutes depending on the moment. She also stretches her hand and foot out over and over until they hurt. Work had settled down and we have gone back to being very involved and the computer is down to one day a week. We pulled phone time in case it is photo sensitivity. We have started magnesium/vitamin b/fish oil/ allergen free diet over the last couple of days. Initially, we took her to the emergency room thinking she was haing breathing troubles. They did an xray and exam and found nothing wrong. She wasn't doing it as frequently as she is now at the time and she acts totally fine in between bouts. She says she breathes just fine and just feels the urge to do it. We took her to another doctor and they tested her pee for an infection and id another exam. Again she wasn't doing it as bad then. We also took her to our chiropractor who said it is likely an allergic reaction to gluten, etc. Our concern is how do you know if it really is a breathing tic or a sign of something else? it is very hard to find a video example of this kind of tics in order to confirm in some way. We do not have insurance and do not believe in prescriptions for long term use so it is hard to know how to diagnose.

 

Background: As an infant she complained of stomachaches continually and then her teeth began to break off easily and she broke out in an all body rash for a couple of days. This is when we were alerted is was likely food allergies, specifically Celiac Disease (the teeth are either genetic or a result known as celiac's teeth). We cleaned her entire diet up and she stopped complaining about her stomach and she did not have a rash again. Over the last year we have been relaxed with her diet because of extenuating life circumstances and we weren't sure if she actually was allergic because we never had an official test done. She didn't complain and nothing happened immediately as a result so... then this.

 

Has anyone else seen this kind of breathing tic? How do you know if it is a tic versus a throat problem? Should we start with an Environmental Doctor or go to a pediatrician and then neurologist to confirm? How costly is an Environmental Dr? Can an Environmental Dr diagnose tics versus other ailments? I really appreciate any help any one is able to offer! I am totally freaked out by it and my husband is totally not!

[Chemar]

Hi and welcome to the forums.

I am hoping others who know more related to Celiac issues will be along soon.

I do know we have many posts related to screens and tics, albeit not specifically breathing tics.

As I need to head out to work, I will check back later and try to give some links to other relevant discussions and articles that you may find helpful

[Sheila]

Hi SharingSheryl--I loved that: I am totally freaked out by it and my husband is totally not!   Hah. That's not unusual, though sometimes the roles are reversed. It must have been a serious bout if you took her to the ER. 

I sympathize with all the family stress over work and am glad it sounds like you were able to stabilize things. Meanwhile, so many parents are frustrated with the reliance on screens these days. Great that you have reduced computer and phone time.

Please let us know if you have seen any change with the allergy-free diet you started a few days ago.

When you say  you relaxed the diet this last year, was that specifically for gluten  --  or for gluten and other foods and maybe additives that you had been avoiding?

We have definitely heard from people who had a child with tics that included breathing issues, and the ones who contacted us were able to resolve the issue. There's not a single approach that worked for everyone. But you seem to already have some food-related clues from when she was an infant--and your daughter says she does not have trouble actually breathing.

You've been to the ER and had her checked out, and the chiropractor suggested a gluten reaction. Unless things worsen, it seems it would make sense to focus on foods (keep a log and you probably know that something like gluten can take time to clear the system). Can you go back to what you were doing a year ago? 

Also reduce the allergic load in the home. Has anything changed in the home environment in the last year?

And please make sure that you do not have scented products in the house, from cleansers to deodorizers and personal products. Go natural. Does she have exposure to pesticides or chlorine in swimming pools these days?

To answer your question, all doctors can be expensive if you don't have good insurance, and that includes environmental physicians. Why not do what you can on your own as soon as possible, and watch to see if there is improvement. Then take the next step if needed. We will look forward to hearing back.  Good luck with your efforts! 

 

 

 

 

 

 

 

 

[SharingSheryl]

Hi!

Thank you for your responses! We will continue with clean living and go from there. We did got back to our Chiropractor to have him take another look and to price an allergy test. He did not want to do the allergy test just yet, because he feels we need to give the inflammation time to go down before we test. We had him look at her tonsils to see if he could see any throat related issues. He said something interesting, he said her uvula (the thing that hangs down in the back of your throat) goes towards one side. He said he commonly sees this in patients with some sort of neurological issue. Have you ever heard this? He also mentioned it is somehow connected with Vagus Nerve in some way. I did not pick up on all that he was saying exactly. He did mention I could try doing things to stimulate her right side (massage, one side jumping jacks, etc) to help so that her brain didn't feel it needed to do something extra to stimulate itself. I may be misunderstanding everything he said because as I type it, it sounds a bit odd??!! Either way, we are going to keep trying what we are doing and go back in two weeks for a follow up and maybe an allergy test. Thanks for everything!

[Sheila]

Hi -- How did your follow up session go? I had never heard that a deviation in uvula is connected to neurological issues. This could be a clinical finding that your chiropractor has noticed or something more widespread. I saw a bit online about a possible connection to the vagus nerve. It would be interesting to learn more. Maybe you could ask him for more details on this, if there are any case reports he could share.

Did you do the allergy test? Please give us an update and let us know how things are going if you get a chance.

[SharingSheryl]

Hi Sheila,

We decided to not go to the follow up appointment and instead booked an appointment at the Environmental Health Institute of Dallas to get more thorough testing and evaluation done. It has been a little over a month since we went. The first day they did all kinds of bloodwork to test the strength of her immune system and the overall health of her body. Everything came back normal, aside from slightly high platelets (which is subjective without having had them tested before to know her baseline). The following day we began skin testing for the top suspected culprits based on the previous day's doctor evaluation. Based on the information provided the doctor, she suspected the following allergies mold, mycotoxins, cat dander, nickel and food (to be determined by testing). On a scale of 1-10 she ranked the following on what was tested:

Mycotoxins- 9
Mold- 8
Cat Dander- 4
Wheat- 2
Dairy- 2
Egg- 2

This, plus the rescue antigens serotonin, histamine and capsaicin, was all that we were able to test that day. That day we began rescue antigen injections daily for 14 days and then every 4 days thereafter. Approximately 2 weeks ago we began the mycotoxin, mold, and cat dander antigens, which are administered every 4 days as well. While on the rescue antigens in the beginning her breathing tic transitioned into a coughing like tic and then it was almost completely gone. Once we began the mycotoxin, etc antigens, her symptoms came back heavy for that night and tapered off by the next day. It made it clear that they must somehow be associated with mycotoxins and mold because of the symptoms reappearance. This is good to know because we uprooted our whole life overnight and moved out of our house in order to provide a mold free environment for our daughter. She now has a light breathing tic that is mostly unnoticeable and I still believe it is due to the antigens and it is a part of the process. I pray that this will cure her tics and lessen her allergies so that she does not have to fight this forever. I am still kind of in shock that mold could do something like this. It is hard to wrap my mind around. 

Another aspect of her treatment is a vaccine created out of a swab taken from her throat. They grew a culture and then turned it into a vaccine that is to be tested on her skin and then injected to prevent a reaction to any of the bacteria in the future. We are also suppose to go back and test for more items, however we have not yet retuned for that. The doctor wants her to be on a rotation diet as well. Which, we have not been successful at. We have instead just pulled out the allergens, rather then rotate them because we are living in a family member's house that is being remodeled and does not have a kitchen. This makes it difficult to manage a difficult diet. We are hopeful she will fully recover from her tics and not be plagued by them for life or at least mange them to a level that they do not disturb her. I will continue to update as her treatment progresses. Thanks for reaching out!

[Sheila]

Hi -- we really appreciate this detailed report and it's heartening to know that you've found some answers for your daughter. I especially appreciated knowing what Environmental Health Center of Dallas. I wasn't sure how things were proceeding after their founder. Dr. Rea (who was on our advisory board) passed away. They were always excellent for mold issues plus so many other environmental issues. I applaud you on moving out of your home to get here way from mold, and you've seen an improvement. I can imagine a rotation diet would be too much to try in someone else's home without a functioning kitchen! 

I imagine your doctor would have warned you about renovations where you are staying  -- hopefully they will be nontoxic, with non-VOC finishes etc.   

Please do keep in touch. We can all learn from your experience, in addition to being able to celebrate any successes.