question for all that can help

[faith]

bmom,

my son does have tics on a daily basis, especially now since late August. Alot of the time, they are probably just noticeable to me and of course his teacher since she is aware of the issue and spends alot of time (especially quiet time) with him. A casual observer would not be aware unless they were looking for it (he has a vocal throaty sound and eye twitching right now, however some days are better than others, like it is not off the wall non-stop). And I have to say I do notice some other things, like I think he is doing the abdominal tic that some have mentioned here. I think I would call all of this waxing, and when he is way more unnoticeable or much less frequent on those tics (mostly during summer) then I would call that waning.

 

The way I got the antibiotics was of course it was prescribed for that time last year that I spoke about, and that to me was a clear cut exacerbation as it was what I call "off the wall" eye ticcing, and he was also way hyper, like running around not listening to me and ramming this big wheel into everyone at a birthday party. So yes, I noted a vast improvement withing days of that. However, on testing for the titers about two months later, he was negative (low titers). Things were pretty good during the summer, but then he started with a vocal (which I'd seen in him before, so it wasn't the first time) and after consulting a DAN doc about it, he did have another titers test and that was negative as well. So really I had to leave that alone, although I always stay on top of the issue.

 

Now, a month or so ago is when he started his eye twitching again, so I brought him in regular pediatrition to ask if he would agree to give throat swab/culture for strep and he said he would. Even though he was negative, he was cool with prescribing a course of augmentin, in fact it was his idea, that if it worked, great. Really, I was just lucky, as he is at least aware there is a such thing and I guess he saw I was in a state. I think you asked if the antibiotic worked this time, (and I hemmed on giving it, but eventually did and well, I don't think it helped like last time, although I saved some and I'm just crazy enough to try it again on him if things get worse.)

 

bmom, you say your son started tics at 8? Is there anything at all you can remember that could have been a tic that you did not know of at the time? My son started at 3 1/2 with a facial grimace that sent my world plummeting. That got better after a couple of months, but I think there was always something going on every now and then. You mentioned a fist clenching, I saw that in his younger years. You also say your husband has minor tics, and I will put myself in that category too. I don't have tics all day, just little bouts of compulsions like tapping or a head tightening that no one really ever sees. I did have tics as a child, but it was never an issue, so like CP's husband, I never even knew i had anything.

 

I think you are doing all you can, and it seems we have a similar history with our child and the way we are handling/researching this. Only advice i can give is that if you ever feel he is really waxing, that would be the time to retest, and hopefully get a doctor to prescribe antibiotic, but if he doesn't show strep even on swab, it may not be easy. Do you live in major area where you could shop around ? Does your son show any other issues, OCD or behavioral?

 

Faith

[JudyLV]

bmom,

you asked Could I avoid going gluten free by adding enzymes?

 

This is addressed here http://www.enzymestuff.com/conditionceliac.htm Karen DeFelice also writes about this in her books. She reports that some people can get away with continuing to eat gluten by adding enzymes to their diet. However, if someone has Celiac Disease they can acutually get worse if they eat gluten and use enzymes. The enzymes break down the gluten and the result is exposure to a larger quantity. So I guess you could try and see or actually get tested for Celiac Disease or gluten sensitivity before trying enzymes. In any case if you are going to be tested you need to continue to eat gluten until the tests are completed.

 

--Judy

[michele]

Faith,

I don't know what is working if it is the antibiotics or the supplements but Andrew is a much easier kid to handle. He still gets mad and slams his door and whines but it is not constant. When we started this journey he was an unhappy kid who was always in hyper mode. Now he sometimes can be loud or demanding but it is not 24/7. I have noticed a few mood swings since we added Nystatin but this must be dye off of the yeast. The antibiotics even the stronger ones do not completely take the joint cracking away. I don't know if others here had 100 percent improvement in ocd and tics on the antibiotics. Maybe too much damage was done to the part of the brain from repeat exposure to strep or elevated strep titers. I did find out my husband's family had tics. Andrew's were brought out at a young age due to strep and fevers and immunizations. However he was probably had the genes to get a tic disorder. I want to believe that the diet, is helping along with the supplements. He has less OCD symptoms now too. However the urge to go potty still comes too often. I think yeast can play a role in that too. Maybe the cracking is a compulsion too. It is hard to tell the difference between a tic and a compulsion. He does scream out sometimes and repeat echo what he has heard. Has anyone stopped the antibiotics to see if they are making a difference?

Michele

 

I think it is possible that even though there is not the clear cut PANDAS connection or diagnosis, just the fact that there is strep or viral illness lurking, and I suppose there are antibodies involved in non-PANDAS as well, maybe that does contribute to a little waxing on tics or OCD or behavior, maybe just not as obvious or dramatic. ?? As I've mentioned a couple of times I thought this has happened (we are non-PANDAS as of now), so bmom, I guess I'm kind of in your category, trying to detect a connection, but titers are negative and I don't really see any dramatic changes in behavior or tics, except that one time last year that I have posted about and we did use antibiotics successfully (waxing does not necessarily mean dramatic--it may feel that way to us, but the criteria is usually alot more than that and maybe more than one tic). I have even asked the DAN doctor on our last visit if we could do the titers testing again as we did last year, but he said if it showed negative while he had tics, then it probably not an issue.

 

Michele, since you have started antibiotic, have you seen real improvement? I'm sometimes a little sketchy since you say he still does some finger cracking. But are most of the symptoms you noted under control? or do you wonder if this is all working for him?

 

Faith

[bmom]

Thank you so much for the replies. Would the ALCAT test show if he was Celiac or would I need to do a specific celiac test? I am also wondering if Dr. Murphy would be able to suggest antibiotics during times of flare ups but not daily. When I took my son in this week, they only did the swab. I wonder if I should have a culture done. He seems to be feeling better now and I am thinking that I am seeing less ticcing. Michelle, I read last night that people with arthritus should also take the digestive enzymes. You may already know that though. I go back and forth as to if I should just take him to a specialist as he has always had light sensitivity and since the tic explosion we have just limited tv time. I guess he is usually ok daily so I will wait and see if there is a pattern. Im rambling, but Faith, we did see a few minor things growing up, but they would only last a day or two and perhaps be once a year or every other for a total of 3 times. He has just turned 9. I am just hoping that I can figure it out. I suppose my next step will be IGG as he has typical allergies. Anything else to recommend? He does not have behavior problems and I do not see any OCD symptoms. He is doing great in school although his teacher says occasionally he is slow on doing work. Thanks all and Cheri can you think of anything else I should do now? When the outbreak happened I did change diet and nothing seemed to help. Although if it was strep, perhaps antibiotics would have helped. When he had strep recently, he went on Pen V and I saw no ticcing.

[LisaM]

Faith,

 

I was wondering about the time last year with the big exacerbation- was a throat culture and/or titers run then? I wonder because I have read that titers can go down fairly quickly in some kids. Also what was the antibiotic used at that time? Was it the same one (augmentin) that was used again later with no improvements? At 3 when it all started was there strep involved that you know of?

 

bmom, I think it is usually a good idea to get a culture as the rapid has like a 90 to 95% accuracy rate and if the person getting the swab didn't do a thorough job the rapid may not pick up enough of the bacteria to test positive. Also bmom, did you say it takes a week for your doctor's office to get results? That sounds like a really long time. But they didn't culture it this time right? You may want to consider getting your own at home rapid strep tests.

 

Lisa

[LisaM]

Also, bmom, I don't think the ALCAT will tell you if there is celiac disease, just a sensitivity to wheat. Your regular ped can test for celiac. We are actually going to have the ALCAT done next week for my daughter. We have been very reluctant to do it because every doctor we have talked to, conventional and natural has said that it is not reliable at all but some here have found it helpful so I think we are going to see what it has to say.

 

Lisa

[JudyLV]

bmom,

 

In order to get a "gold standard" diagnosis of Celiac Disease you need to have an intestinal biopsy that shows villi damage. Here is more information on the testing http://jccglutenfree.googlepages.com/diagnostictesting

Your pediatrician could order the initial blood tests and if they were positive you would need to follow up with a GI doctor.

 

--Judy

[Caryn]

Yes,

And don't do what we did--

go gluten free first, before seeking a celiac diagnosis.

Gluten must be eaten every day for a certain period of time (maybe Judy knows for sure) before a positive dx can be made. It is very hard to get a positive dx. We had so much luck with eating gf that we do not wish to go back to feeding our son gluten every day for a month to see if he is actually celiac. We don't definitively know. The Alcat did have a section for wheat allergy, gluten intolerance, and mentions celiac on their reports. In our case the test read severe (red) wheat allergy, medium gluten intolerance, and did not specifically say he was celiac. I do not know if the Alcat specifically tested for celiac. I assume they did not. Besides, those that are celiac on other forums say that there are only certain tests that are truly reliable. Go with what Judy suggested. For anyone in the same boat as us, I have read about a company that does a stool test. It supposedly shows a much higher rate of positives and is therefore not highly regarded by conventional docs. It is an option for people already practicing gf diets, as there need not be a month or more of eating wheat every day for dx. We have not done that. Right now we are happy going along as we are. I am terrified of giving my son a gluten filled diet again. I did read somewhere that a severe wheat allergy coupled with gluten intolerance that is corrected in a child before the onset of actual celiac's disease can mean a return to moderate gluten intake later as an adult. I hope it is true. I feel like we are getting chased by an elephant here.

Caryn

P.S. I also read that for families with gluten sensitivities it is imperative that we do NOT feed our babies and toddlers anything with gluten until they are over 2 years of age. If anyone suspects gluten sensitivities in their older children please read the labels on your baby jars. Gerber has a lot of products with gluten. We put our baby on a gluten free diet along with our Tigger and he is thriving. I have found that they actually eat more "real" food now. Baby eats a whole apple, skin and all (not core and seeds :>)) and this amazes people.

Oh, and one more thing--

I also read that severe gluten intolerance can cause multiple allergies--it is a whole gut related thing. Watch for candida, too. They claim that a long-term gf diet can actually eliminate other digestive allergies over time (like three years or more). Some celiacs say you should eliminate milk at first and then return to it after the gut has had significant time to heal.... Just food for thought. Sorry for the pun

Everyone in the States have a happy holiday.

[bmom]

Thanks all for the replies. Lots to ponder. There is one more quetion- Do you think that Dr. Murphy would recommend antibiotics for flare ups only?

[bmom]

Faith, Can I ask you how old your son is?

[faith]

bmom,

my son is now 8 1/2. Could I ask you more about what you said about your son being slow to complete work. That is exactly the reason that I have always had the teacher on me in first, second and now third grade. If not for that, I could say he does pretty well. All teachers agree he can do the work, but he is usually last one finishing classwork and much of the time does not complete what needs to be done on time. However, he seems to complete the tests in the time alloted. We are now going through the testing process at school in order to obtain a 504 plan for him as teacher this year expressed she would like him to succeed and was concerned about how his tics may be impacting the rate at which he goes. I wonder, do you ever think your son's tics have anything to do with the slow pokiness? I really don't see any other issues, it would get me if they try to label this as ADHD, I really don't think its that. I sometimes think the tics, like blinking, could slow him down, especially if he loses his place reading while he has to blink, or possibly supress a vocal.

 

Lisa,

at that time I brought him in because on the way home from the party where all ###### seemed to break lose, he said his throat hurt. It was Saturday late, so I brought him in Monday, and no, I don't believe he did a swab, just diagnosed him by looking, there was these red dots that he showed me, so he gave amoxycilin. Then by the time I figured all this might tie in, we saw an Infectious Disease doctor about two months later and that is when they did the titers. They also did the swab/culture then and it was all negative. (I have to slip in that in spite of all that, when my son started the vocal a few months after that at summer's end, I went in worried about him saying his throat hurt only for one day and I thought I saw those red dots--swab and culture was negative--but I got him to give me the amoxyciling at that time as well to see if it had any effect on the vocal. But it didn't seem to even after the full course. And so when I got him to give me the antibiotic this last time (I had to try it again) I asked for augmentin because of all the discussion here about amoxy not working on some, so I just figured I'd try something else if I could--didn't want to leave any stone unturned). But as I said, don't think it was helping anything to speak of after about five days, so I figured I'd save the rest for another desperate time . As far as strep at the time he was three, I don't believe he ever had it before that I know of. I did look at copies of his medical reports (different ped. at that time) and tried to see when he had antibiotics (I know he did for bronchitis) but don't think it correlated to that time. His tics at that time I would not call explosiive or dramatic, but alarming just the same.

 

Michele,

Just to note, I am really inclined to beleive the supplements and diet have something to do with at least the behavior, especially since you say you do see some behavior now and again. And since he is still pretty young, I wouldn't chalk it up to maturity just yet. I think since I have embarked upon the supplements and dietary for the tics, I think I have noticed a definite improvement (even tho that's not what I was looking for) in his emotional liability and tantrums when he didn't get his way. Now I could say maybe its maturity because he is in third grade now, but I really think its the junk that we limit.... I guess one day you will have to stop the antibiotics sometime to see if he still needs it, and you will get your answer re that.

 

Faith

[bmom]

My son usually gets his work done, only on occasion doesn't. At the beginning of the year his teacher was a little on him about it, but we just had his conference and the teacher said his progress has been remarkable. Maybe diet and supplements? I am wondering maybe so. I know he said that in class there are about 5 kids that always finish after him so it does not seem to be a problem right now. His explosion of tics was in grade 2 so his teacher does not know this year and the blinking has not been that noticable or interfered with work. One more question for Faith. As your son gets older, are the waxing cycles more noticable and longer or about the same each year?

[faith]

bmom

 

I think about the same, seems like this time of year is the most. And I worry about it being more noticeable as he gets older. Maybe not so much now because younger boys are silly and always moving around and goofing, so peers are not as aware.

 

Faith

[michele]

http://www.schoolbehavior.com/conditions_ts.htm

 

We are currently dealing with the school to try to get some OT based on fine motor trouble. This page is good as it discusses the school issues these kids deal with. ADHD does often go with this tic disorder. In fact it causes more trouble then the tics themselves. My son is having trouble forming his letters and numbers and has some trunk coordination delays. We are in the IAT process right now. Next they will test him. They were trying to put him off based on his age and the fact he may get this with time and maturity. They said an OT diagnosis can't stand alone and needs something like a LD to stand with it. I would think the diagnosis could stand with it. However I believe and Dr. Murphy believes it is a delay based on the PANDAS. She wrote us a script for OT. I plan on printing off and bringing the articles to the meeting. The teacher said his writing is the worst in the class. It is bothersome to me because he had all this at age 3, 4, 5, and he is not able to control the pencil. He is having trouble with bilateral crossing over his midlines. Thought this might help you because they talk about things to consider in the classroom.

 

http://www.tourettesyndrome.net/Files/scho...nal_therapy.pdf

Also I do think Dr. Murphy would write out a plan to use antibiotics only during flare-ups. Unless you live in FL. she will only write out a plan she will not give a script for meds. You hen have to take it back to your Dr's. However realize that with repeat exposure we have found his tics got worse multiple kinds and lasted longer. If we had been on daily prophylaxis earlier we may have got this monster before it got to this point.

Michele

 

My son usually gets his work done, only on occasion doesn't. At the beginning of the year his teacher was a little on him about it, but we just had his conference and the teacher said his progress has been remarkable. Maybe diet and supplements? I am wondering maybe so. I know he said that in class there are about 5 kids that always finish after him so it does not seem to be a problem right now. His explosion of tics was in grade 2 so his teacher does not know this year and the blinking has not been that noticable or interfered with work. One more question for Faith. As your son gets older, are the waxing cycles more noticable and longer or about the same each year?

[P_Mom]

http://www.schoolbehavior.com/conditions_ts.htm

 

We are currently dealing with the school to try to get some OT based on fine motor trouble. This page is good as it discusses the school issues these kids deal with. ADHD does often go with this tic disorder. In fact it causes more trouble then the tics themselves. My son is having trouble forming his letters and numbers and has some trunk coordination delays. We are in the IAT process right now. Next they will test him. They were trying to put him off based on his age and the fact he may get this with time and maturity. They said an OT diagnosis can't stand alone and needs something like a LD to stand with it. I would think the diagnosis could stand with it. However I believe and Dr. Murphy believes it is a delay based on the PANDAS. She wrote us a script for OT. I plan on printing off and bringing the articles to the meeting. The teacher said his writing is the worst in the class. It is bothersome to me because he had all this at age 3, 4, 5, and he is not able to control the pencil. He is having trouble with bilateral crossing over his midlines. Thought this might help you because they talk about things to consider in the classroom.

 

http://www.tourettesyndrome.net/Files/scho...nal_therapy.pdf

Also I do think Dr. Murphy would write out a plan to use antibiotics only during flare-ups. Unless you live in FL. she will only write out a plan she will not give a script for meds. You hen have to take it back to your Dr's. However realize that with repeat exposure we have found his tics got worse multiple kinds and lasted longer. If we had been on daily prophylaxis earlier we may have got this monster before it got to this point.

Michele

 

My son usually gets his work done, only on occasion doesn't. At the beginning of the year his teacher was a little on him about it, but we just had his conference and the teacher said his progress has been remarkable. Maybe diet and supplements? I am wondering maybe so. I know he said that in class there are about 5 kids that always finish after him so it does not seem to be a problem right now. His explosion of tics was in grade 2 so his teacher does not know this year and the blinking has not been that noticable or interfered with work. One more question for Faith. As your son gets older, are the waxing cycles more noticable and longer or about the same each year?

 

 

Hi,

Just for PANDAS moms info. I spoke with Susan Swedo's assistant at the NIMH yesterday. She told me that blood titers are not a means to diagnose PANDAS. So, just because your child's is low, or even high, does not define PANDAS. It is mostly the sudden, abrupt, onset of tics/ocd related to strep, and then the exacerbations associated with strep, illness, etc.

Take care!

Kelly