Betty04

My son was exposed to C-diff during a visit from my mother in law last year. It does typically occur when in the hospital but since he was exposed in our home and it coincided with his poop issues we decided to test for it. My understanding is that one of the parasites my son has is in dirt (hookworm), so we are currently keeping him out of the sandbox and no visits to the beach. The DAN doc said that 70% of the kids she sees on the "spectrum" (which she is not restricting to autism, but includes tics) have had issues with parasites due to poor immune system functionning. All of us I believe are exposed to these parasites on a regular basis but are bodies defend them off. That being said, I am going to follow up on the 16th with a visit to a GI doc... he told my husband over the phone that he was shocked my son has hookworm as it is incredibly rare and he was questionning the reliability of the lab results. That being said I can tell you that since being treated for the hookworm, my son has normal looking poops, has finally gone poop in the toilet for the last 3 days and is now insisting on wearing underwear. The DAN doc thinks the loose stools may be the reason he has not yet toilet trained, though he is a boy and 3 1/2 years old. We also started him back on probiotics and today I gave him a second dose of Singular for allergies. I can't decide yet if his tics are improved, they unfortunately are still present. I will update as time passes... on Sunday we give another dose of med for the hookworm and begin treating the second parasite. I pray I see something improve to justify these meds! Let me know if you want any further info.

Don't mind sharing the details. He is 3 1/2 yrs and still not potty trained so we talk about poop all the time Basically for the last year he has had loose stools. This began before we started multiple courses of antibotics. Then we noticed and other caretakers commented on the quantity of undigested food in his stool. Then there was the extremely offensive smell... my husband is a physician and he said it smelled like C-diff wards in the hospital. The smell took over our home every time he pooped... I would be upstairs and him downstairs and the minute I started coming down I would know he pooped!

Just wanted to update after our visit to the DAN doctor last week in case this is helpful for anyone. I am surprised at how many factors can actually play a role in tics. My son has continual "poop" issues and we were testing him through Metametrix with DNA testing to see if he had C-Diff. This test was more accurate than prior stool tests that were negative. To our surprise he tested positive for hookwork and cryptosporidium. He will take 2 meds over the next couple of weeks and hopefully we will not only see an improvement GI wise but also with his tics. The DAN doc says that all of us are exposed to these parasites but his poor immune functionning has made it impossible for him to ward off... now if I only knew why he has a poor immune systems!? Hope this is helpful or interesting to others... the stool test by Metametrix was very comprehensive. Betty

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

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!

My 3 year old had the flu shot in October. He had a rapid, severe onset of eye blinking the next day. The neurologist was alarmed enough by his presentation that they put him under anaesthesia for an MRI. He has never been the same since this shot. I was told it was mercury free and hypothesize that the flu shot overloaded his fragile immune system? My DAN doctor recommends avoid flu shots in the future.

Caryn, I am horrified... my Rice Dream says gluten free... is that not true? Thanks for sharing your experiences... i will check if we tested for pyroluria. Betty quote name='Caryn' date='Apr 22 2008, 08:09 AM' post='22735'] Betty, Was he tested for pyroluria? Our ds, also GF as per IgG test, was dx'd with pyroluria. I don't know how severe the IgG results were for gluten on your son's test, but long term gluten diet in the gluten intolerant will cause gut dysbiosis and lead to imbalances that take some time to be corrected. I would be surprised if the GF diet would work in a matter of days indefinitely. Gluten takes a long time to get out of the body. Also, stress is a major factor as well (especially with pyroluria). You could get an at home pyroluria test and will get results in about a week. In our case the gf (and corn free as per IgG) diet works great to stop tics, but took about five months before we were tic free. Any ingestion of gluten or corn will cause a flair up that lasts about three days. I have also cut out any foods with neurotoxins in them. (We do a feingold diet as well but do eat some salicylates). One last note, It is quite possible you have reintroduced a food that actually contains gluten (like Rice Dream Rice Milk) or a vitamin that uses gluten to bind the nutrients. This will cause flare ups. For example, I was seeing constant teeth grinding last year after the diet change and could not for the life of me figure out the cause. It finally dawned on me that I had to cut out the citric acid in my son's diet as it is a corn derivative. Hope this helps. Caryn Pyroluria Info

Hi, I could use some advice. Based upon the IGG testing at the end of March, I started a Gluten free diet. Within a couple of days, my son's tics disappeared! The next week I had my feedback with the DAN doc and we continued the GF diet and also added casein free, soy free and nut free. He began Vit B 12 shots on 3/26. His probiotics were changed from 3 down to 2 (we keep the prebiotic and added a different probiotic). He was also given supplements of Cal (500mg) and Magnesium (250mg) and Vit B6 25 mg. He is 3 years old so giving the Cal/Mg and B6 were a daily struggle, but last week I started the transdermal B6 cream and a compounded liquid of the Cal/Mg that are going much easier. My question is this.... 2 weeks into the GF diet (1 week with the CF, soy and nut free) and one B 12 shots, we had a setback. Things were great, no tics and then in preschool he was at an event on stage and all the parents taking pictures with the camera flashes triggered his tics immediately and 4 weeks later things are no better! He wakes up in the morning and begins to tic as soon as he see daylight! Does anyone have any experience with supplements that might help that we don't currently take? Or do I need to give things more time? I have a follow-up with the DAN doc next week. I plan to ask about folic acid as that seem to be missing with the other B vits? Any suggestions would be great as I would like to ask the doctor about supplements that others found success with. I guess what I am looking for is something that addresses light sensitivity as it seems he is so vulnerable to light and with summer coming the sunlight is obviously a concern! Thanks so much!

This may be old news here but since I have been helped by so many post I thought I would pass along this information. My DAN doctor has my 3 year old taking probiotics and supplements of Magnesium, Calcium, B 6 and B12 shots. Since he is currently GFCF, soy and nut free it is difficult to find foods to get my son to be compliant. The DAN doctor gave me the website for a compounding pharmacy and they are compounding a Vit B6 cream and compounding the 1000 mg of Calcium and 500 mg of Magnesium in 2 teaspoons! I am so excited that this may end our daily "fights" that I thought I would pass along the website www.leesilsby.com You need a prescription to order many products but I am hopeful that will mean insurance will cover some and they even process the order through insurance. Again may be old news, but I did not know they could compound vitamins into creams to rub into the skin and they are supposed to be even more effective than swallowing! Hope this helps.

Calicat, Thanks for the tip about the bananas, the smoothie I made this morning my son hated. I think it was because the banana was not ripe enough so I thought overripe would be perfect, but now I know better Tami, thanks also for the cookie recipe, i know lots of baking is in my future, I told my husband I need to quit my job to grocery shop and cook full-time Betty

Thanks, we just had a Jamba Juice open and now I have a great reason to go! Glad to hear I will now have use for all my over-ripe bananas I am glad to hear you already noticed a difference with the gluten free diet, I know it takes time but I am glad to hear that it may not be 6 months! Thanks again Tami!

Thanks for the smoothie suggestions, that may be a great breakfast idea? Do you just use ice and fruit/veggies? I have not made a smoothie in many years but I recall using yogurt and milk. Since dairy and soy are out I was just wondering if they still taste good with ice only? And thanks for saying I am "wise" to start with gluten, its so hard knowing what is best! If you don't mind me asking, have you seen any improvements since going gluten free, and if so, how long did it take to see a difference? Thanks again, Betty

Thank you all so much for your responses. I was so upset over the weekend that I never went back to these boards. I wish I did because you all certainly made me feel so much better! Caryn you especially made it seem like I could do it as it was very helpful to organize the allergies into groups. I think I am feeling more of the stress as we are preparing to once again make a long distance move as my husband needs to find another job and the uncertainty and selling a house in this market is additional stress. But its Monday morning and I have my DAN doctor appt next week. Based on everyone's advice, I think I am going to cut out gluten starting today as I can't imagine that is not going to be part of the plan and then hopefully get more structured guidance next week. Thanks so much again! And if anyone knows good websites or cookbooks for gluten free diets that would be great. Thankfully we have a Whole Foods nearby -my only crtiterion in the next town we move to Betty

Hi, It was all blood work except for a urine sample that I am still waiting on the results (not for allergiers though).

I just received the results mailed from Alletess of the IGg testing and here are the foods my 3 year old tested positive for: +3 for: Barley Cashews Coconut Corn Egg White Egg Yolk Garlic Gluten Malt Oat Pea Peanut Rye Sesame Soybean Walnuts Wheat +2 for: Milk Rice Lima Beans Safflower Watermelon Can he really be allergic to all these foods? How can I cut out all these things and he still get good nutrition? I have a follow-up appt in 2 weeks with the DAN doctor to review these results and a call into my regular ped b/c other blood work that was taken that day is abnormal ( High BUN/Creatinine ratio; Low Globulin; Low Cholesterol; Low IgG Serum, and intedeterminate Lyme IGg Western Blot)? Any thoughts would be greatly appreciated! Thanks, Betty

Thanks for your feedback. I had him off dairy for 2 months (now I let him have a cup of Kefir daily and cheese once a week) and did not see any changes... amybe it was not enough time? I am still waiting for testing results.

Hi, I am still waiting on the tests results for allergies but just wanted to get a sense of people's experiences with dark circles under the eyes. My three year old will frequently have these dark circles (and no other allergy sxs?), but at other times look great. If a food allergy is the cause, what is the typical timing of eating the food to developing the dark circles. I have been keep a food diary so I am hoping to see some pattern? Though I guess it could be environmental, but we live in CT so I don't think this time of year has too much flucuations in environmental allergies? I also don't see a pattern to the dark circles and the tics, he can look good but have tics? Thanks for listening and any shared experiences will be greatly appreciated!

Thanks Tami for your suggestion. I am so desperate to not have him tic (he is currently in a period of increasing frequency and severity, without any trigger I can identify) that I am willing to do the "mouth story." I typically read at nap and bedtime so exhaustion I am sure plays some role, but I have noticed it when reading at other times. Thanks again for your thoughts!

My 3 year old has a eye blinking tic that is triggered in the car and watching TV. Last week reading books began to trigger the tics. Any suggestions? I know to avoid triggers and we have cut out TV, wear sunglasses in the car, but I hate the idea of not reading books? Any helpful experiences would be greatly appreciated. Thanks!

Thanks so much for sharing your experiences. I hope that the allergy testing we did on Monday will provide some answers! I will post any helpful insights that hopefully will be revealed!

Rest of article can be found at: http://www.celiac.com/articles/759/1/Early...e-MD/Page1.html Absence of gut symptoms does not mean the absence of allergy or intolerance. Gluten proteins have an insideous way of coming out in all manner of places-- gut, intestines, brain, skin.... and it takes a long time to get rid of them if you are gluten intolerant. Could be an allergy to something else, too. IgG will probably tell you that. For me, every time I eat gluten now I get itchy elbows. Used to have dermatitis herpetiformis on them but that went away when I went gluten free. This is how I know I've had gluten somewhere in the diet. Helps me sleuth. Just my two cents. Hope this helps. Caryn http://healthy-family.org

Hi, I am new to the board but have been reading posts for the last couple of weeks. I have a 3 year old with tics- eye blinking, snort, and possibly a head tilt? The head tilt is why I am asking the question to others about "itchy ears." Trying to be brief with his history: The eye blinking first appeared at 20 months and was in the car only. It then happened every couple of months for about a week to 2 at a time outside the car and was worsened by TV. Looking back I realized how he had a light sensitivity as he complained out of proportion to the sunlight when riding in the car. In Oct 2007 he had a terrifying, acute onset of eye blinking the day after his flu shot. The pediatrician and neurologist were very concerned and order an MRI. He had an EEG for the previous eye blinking and both the MRI and EEG were normal. The blinking continued at a seemingly constant rate and him even complaining that he could not see. He was giving antibotics by the pediatrician 3 days after the flu shot as I suggested this may be PANDAS. All strep tests/titers were negative. I was sent to a psychiatrist next who told me to take him off the antibotics. When I did the blinking worsened. I contacted my ENT b/c he had tubes placed and his adenoids removed in Aug 07. He had been off and on antibotics for ear and sinus infections and his allergy testing (standard tests from allergists) came back negative (except for dogs, we do have a poodle). I took him to the ENT because he was complaining that his ears were itchy. I could not understand how he got an ear infection as he had tubes and was home for the past 2 weeks since all the blinking started. The ENT told me his ears were fine and that kids sometimes complain of itchy ears because their tonsils are bothering them. He prescrbied clindamycin and after a 10 day course the blinking was gone. He was open to removing his tonsils as we had pulled some research with case reports of this helping tics. He had his tonsils out in Dec 07 and everything was fine until Feb. I first noticed a vocal tic... a snort, not that frequent, but now has occured on and off with blinking on a daily basis for the past 3 weeks. The severity of the tics is no where near what happen after the flu shot. I have seen a nutritionist at a DAN doctor's office and have put him on probotics. He has stool testing for yeast which came back normal and tomorrow we are having blood drawn for IGg allergy testing and some other viral levels in the blood. I took him to the doctor on Friday because he had been home with a stomach bug for the past week but since last Thursday (over a week ago) he has been complaining of ear pain and itchy ears. The teachers at school even told me they noticed him pulling his ears and complaining of ear pain. But the pediatrician says his ears look fine, the tubes are in place and he had a negative strep test? So why do his ears bother him... I did not even ask the pediatrician as they don't have any answers. The other strange thing that happen is on Thursday after I took him to the pediatrician, I went to work and my sitter put him down for a nap. He slept almost 3 hours, woke up crying and congested and his eyes all puffy. When I saw him when I came home from work I was convinced he caught a cold and put him to bed early, next day woke up absolutely fine? He did sleep alot the next afternoon, basically never got up from his nap and then slept through the night? He does not act sick in the least and is not congested anymore. I did start Nasonex as I am finally thinking the allergist I saw last year before all the surgeries may have been right, plus I have read here that some of you have found it to be helpful. Anyway, sorry for the long post, I would just appreciate any comments or insights any of you have as you are all so knowledgable and I know understand my distress! Thanks!

Thanks so much sharing your experience and I will take your suggestion to search the topic on these boards. Thanks again!