Am I missing anything?

[Betty04]

We are scheduled to meet with next week with the DAN doctor. I just sent her the following email as an update and would love to hear if anyone has additional suggestions/thought prior to our appointment.

 

My 3 year old son's tics have been more frequent and severe. His vocal tic re-emerged after swimming for the first time this year. I believe the chlorine may be a trigger as he immediately started snorting while in the pool and it is still present 2 weeks later (though less often). The other possible trigger is that we unfortunately have a bug problem in our home and have had to spray indoors two times. The bug problem has not been helped and we need to spray again but I am holding off, especially since it will now be necessary to spray his room.

 

This morning was the most upsetting tic I have seen. He was sitting with me at the kitchen table eating breakfast. This is frequently a trigger as the table is next to the windows and the morning light will trigger eye blinking and brow raising. However this morning he displayed a eye rolling tic for several seconds and was visibly upset by it.

 

He has also been frequently tilting his head to the right and left sides and rubbing his ears. This is not new behavior just the frequency has increased. A newer behavior in the last couple of weeks is that he has been simulataneously slapping both ears. Last week he seemed to be tilting his head with greater frequency on the left side. I took him to the pediatrician. I was told his right ear look fine and that he no longer has a tube in that ear. I was told that his left ear "is retracted, something was going on and it is now resolving, can't see if there is a tube because of the retraction..." He has not been sick so I am not sure what could have been going on. He did become very upset when we were in the pool and some water splashed in his ear and my sitter said he was very upset the next day at a small amount of water trickling into his ear during a bath (now he won"t dump pitchers of water over his head as he used to, very upset by water entering his ears in the shower). Neither of these incidents would be causative but it is a change from his typical behavior.

 

He continues to have nasal congestion and dark circles under his eyes that appear rapidly, seem like he is coming down with a cold and then the next day he is better or completely fine. This does seem to worsen right before or during rainy, humid weather and upon awakening in the morning or significanly worse after getting up from an afternoon nap.

 

He has been off any probiotics since our last meeting on 5/20. (Being tested for C-diff due to possible exposure last summer) The timing of stopping the probiotics coincides with his tics worsening. He has been taking Flagyl for almost 2 weeks. We think it may have resulted in more formed poops but it is hard sometimes to evaluate when he poops in his diaper. It seems just as malodorous, maybe less undigested food?. The stool test should be in by our appointment as the 26th will be 21 days since the lab received the test.

 

I have not restarted any probiotics for 2 reasons. One is that I am not sure which to restart... he seemed to be better on the Ther-biotic Complete, Biotagen and Saccharomyces Boulardi (compared to the Detox support and Biotagen) and I have read that S Boulardi is good to take if you have C diff, so part of me is holding out for the lab results. But the second reason is that with the addition of taking the Flagyl I feel I am just trying to minimize the battles I have with him to take supplements. He currently is arguing about even taking the delicious calcium gummy bears. I think it is just because he is 3 and I don't blame him for asserting his indepenece as his diet is so controlled. I also only have been successful at giving him probiotics with maple syrup (his diet is GFCF, nut free, soy free) and I am not convinced I am not negating any of the benefits using such a high dose of sugar.

 

Based upon what has been occuring some questions that we have are:

 

1) With the recent eye rolling, would you suggest an EEG? He had an EEG as part of a developmental work up. The results showed a discrepancy in signal strength between hemispheres that was ultimately deemed an artifact of the test. After the severe episode of tics in Oct 07 after the flu shot, he had a normal MRI. A repeat EEG was suggested by the neurologist if we were still concerned, but not formally recommended as it was felt he had tics and not atypical seizure activity. We decided not to do the EEG as we were considering PANDAS and ultimately had his tonsils removed.

 

2) With his light sensitivity, is there any reason to think he has pyroluria?

 

3) Salicylates- is there any reason to think these are a trigger?

 

4) Recommendation regarding which probiotics to re-start?

 

5) Recommendation regarding any additional testing?

 

6) What about fructose intolerance? He has no interest in sweets we offer him, even those we feel taste good.

 

 

Any feedback would be greatly appreciated!

[P_Mom]

Symptoms such as you described (stuffiness, dark circles, etc.) that worsen with humid, rainy weather, could indicate a possible mold sensitivity/allergy. Also, salycilates can be a problem, you just have to do the elimination diet...eliminating the highly salicylate foods for a while, see if there is an improvement, and then reintroduce one at a time to find the culprits. My younger son is salycilate intolerante, but only to a handful of them.

[bmom]

I just thought of a few things while reading your post. If you suspect PANDAS and it seems that the antibiotic has helped in the past- you said after a 10 day course tics had stopped, would your doctor be willing to do this long term, as a preventative dose? Also, I had read that itchy ears are a sign of allergy. It sounds like you have eliminated many foods, but maybe it is an allergic reaction. My son has photosensitivity as well. Causes that Claire listed as her son had this were Pyloria, high Mercury, yeast, and a deficiency in one of the B vitamins (I believe it was B2). Just things to run by your DAN doc. Anyway, I understand what you are going through. My son recently started the eye roll and something about it really alarms me.

[Betty04]

Thanks for your feedback. It helps to have support and company. I will post again after our appt on Thursday evening in case our feedback is helpful to someone. Betty