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I'm at a crossroad and don't know which way to turn.

About a year ago, we stopped seeing the child psych. as rx was causing problems and we wanted him completely off meds.

So,9 months ago my son went to a DAN dr. for the first time. She started him on IP6 and magnesium as well as another supplement that has been discontinued. We saw her a few times for testing and to review vitamins/supplements. She wanted another test to be drawn. But, because of anxiety and fear the first 2 times we drew blood, I decided not to do this. It is very traumatic for him and stressful for me for him to have blood drawn. The blood draw is needed for her to know what to try next.

Then 6 months ago, he also saw a chiropractor who does muscle testing and NAET. We only saw her a couple of times. She of course also wanted a test to be completed, but not a blood draw. The test she was requesting was for problems with the gut and bacteria and all. Anyhow, I didn't do that test at the time because of the cost was $379 and I didn't have the $. And I wasn't real sure NAET was really the answer.

So, in the meantime, he saw an allergist and had an allergy test. This was again huge anxiety and fear. But we made it through the test. The allergist said he had a few true allergies of dust mites, cats, sycamore, and one other (I still need to get copy of that report as I don't recall). Anyhow, from looking at his back, I could really only see 1 that was very large and it was the only one that itched him. Allergist wanted to put him on medication year round and for him to come back for a check-up. I didn't fill the rx as I am not medicating my son when he isn't showing any big signs of allergies. We were hopeful an allergy would just pop out at us but it didn't. Nor did it correspond with the allergies/sensitivities the chiropractor said he had or with the IGg and IGe the DAN dr. did.

So, I continued to give him his IP6 and magnesium and played the wait and see game. Well, now I am ready to do something else as we are still having issues with ticcing and anger has been out of control. But, I'm not sure what to do. So, I need some advice. Would it be more benenficial to go back to the DAN dr. or the chiropractor or do you reccommend something else? If I go back to the DAN dr. we may choose a different one as I'm not real happy with the first one. The one is about an hour away and the other is about 1 1/2 hours away. So, not a huge difference.

It isn't that I think I am smarter than any of these doctors. It is really I am trying to do what is best for my son and use bits and pieces from each and move on when there is nothing else. Plus, money is a big issue as insurance doesn't cover anything. Unfortunately, we have to take things slowly. And to make matters worse, I have been dealing with my own medical issues for the past 4 months that are still unresolved.

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Hi

 

remember you can also see an Integrative MD, environmental physician or even a D.O. and they would likely be covered by insurance!

 

sorry if you have already posted this and I missed it, but do you have an actual diagnosis for your son?

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Yes, my son is dx Aspergers, tourette's, and ADHD (just because it had previously been dx). We live in a very small rural area and don't even think we have those doctors. Plus, husbands insurance doesn't cover any childhood disorder or Autism. Nor have we been successful in getting any help as we make too much money they say.

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hi,

not sure what exactly your question is, but I'm wondering about the blood test and NAET. we've had NAET treatments last year, and it did not require blood testing. she just muscle tested a panel of allergies and we went from there. I, myself would like to continue on, but we treated a number of things to no avail, (at least not on his tics at the time), but I always wonder if there is something I have not yet hit upon. I would go on forever, except that it is of course money each visit. Could you find one that doesn't require a blood test?

 

Faith

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Hi Mom2ck,

 

I just thought I would give you my experience with NAET as we tried it for my daughter for almost a year. My daughter was diagnosed originally with Tourettes 1 1/2 years ago and most recently with PANDAS (1 month ago). When we first got the Tourettes diagnosis we started her off right away on NAET. I have a neighbor who has a daughter whom is mildly autistic. She has been taking her daughter for NAET since she was 4 months old and her daughter is now showing no signs of autism. Anyway, she highly recommended it. We went to Devi Nambudripad's office in Buena Park, CA (Devi is the woman who started NAET). We were told right off the bat that they don't have a good track record for people with tics or tourettes. However, we decided to see what would happen as I had heard so many good things about it. We went through all the basic treatments (I think these are the fist 12) and many others. My daughter had a negative reaction to each and every one (her tics would increase and stay like that for the next 3 days). I got tired of waiting for things to get better because they never did. The people in Devi's office did not know why my daughter was reacting the way she was. NAET did not help us at all unfortunately. Also, some of the things she was "cleared" for in NAET showed up as allergies on a recent allergy test.

 

We also saw a very reputable chiropractic neurologist for 6 months who did muscle testing. Things did not work out with him either. He muscle tested my daughter for many things including egg which he said was fine for her to eat. Well her latest allergy test shows that she has a strong allergy to egg (both yolk and egg whites). He also tested her for dairy and casein which he said she should not eat and her allergy report said she had no allergies to dairy. Very confusing.

 

I hope I'm not upsetting you with this posting. Keep in mind that we were ultimately diagnosed with PANDAS (although I'm not 100% convinced of it). So that might be why nothing worked for us. I know there are other people on these boards who have had good success using NAET and chiropractors. I just wanted to give you our experience since we tried both of these avenues. Good luck - I hope you find something that helps your child!

 

Caring Mom

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Thanks caringmom for your response. I actually want to hear all sides as it is confusing and knowing what to do with your child.

Faith, the test the chiropractor wants us to do is a Sensitivity Stool and Gene Panel by EnteroLab. It is $369. The DAN dr. wants a NutrEval test by Genova Diagnostics. It is an Amino Acids blood test. I realize testing is essential in knowing what steps to take, but it is expensive and blood tests cause so much anxiety for my son. The DAN dr. gave him some calming medicine last time which helped. But he refuses to go back to her as he says they are going to hurt him. I can hide the fact of which dr. we are going to, but as soon as we get there, it will be dramatic. We have done blood testing 3 different times for different reasons and each one was aweful! I tried bribing, calming, holding, etc. Nothing seemed to work. It was very taxing on him and me.

 

Thanks to everyone for responses.

Christy

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Hi Christy,

 

I don't know if you are familiar with EMLA cream. I asked my DAN doctor for a prescription for it when my daughter was going to have a blood draw. You put it on 1/2 hour before you get the blood drawn and it COMPLETELY numbs the area where they stick the needle. I didn't know which arm they were going to use so I put it on both my daughter's arms. She felt absolutely nothing!! It was a breeze and she watched the whole time. I asked her if it hurt and she said she didn't feel anything. It was the best $10.00 I ever spent! Ask for it, it's well worth it!

 

Caring Mom

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Caring mom, thanks for the recommendation for that cream! We have a compounding pharmacy down the road and I think I'll ask him for some of that(or do you need a prescription?).

 

I have to say that we did NEAT(a bit different from NAET, but still a type of muscle testing) with an alternative med doctor, too. I didn't see any improvement in tics or in his allergy response. Ds' allergies have been getting worse this year and I know most of his allergies are environmental so I'm thinking of doing an actual allergists testing and see what comes up. I'm assuming dust mites, pet dander, and tree/pollen allergies. I've tried to change his diet so many times that I never see a change in his tics. I've been letting him eat all kinds of crud all summer long and I still don't see a true increase in tics, they just change. So, instead of him sniffing his tennis racquet while on court, he pulls on his shirt now with his right hand. Or, instead of blinking his eyes while watching TV, he now does a mild eyebrow raise.

 

Anyway, I would like to find an integrative medical doctor but I have yet to find one here in AZ that is reputable or recommended. With my luck, I'll finally find one and they won't take my insurance, LOL!

 

Bonnie

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Hi Bonnie,

 

You will need a prescription for the EMLA cream (the box actually says lidocaine and prilocaine cream 2.5%). I got my prescription from my daughter's DAN dr.

 

I have had my daughter on a very strict diet for 1 1/2 years now and I'm just about losing my mind on it. She is gluten-free, yeast-free, corn-free, and dairy-free. She basically eats vegetables, some fruit (no apples, grapes, or oranges), meat (which she hates), and rice based pastas. It is very hard to get her to eat. I have always fed my kids healthy foods but this is getting ridiculous. We can't go out to eat and have to bring food everywhere we go. This has really impacted our social lives as everything in our society revolves around food. My daughter has been phenomenal about accepting her diet but she's almost 7 now and food is becomming a huge issue at school. She feels left out as the other kids get to enjoy "normal" food for lunch and share it with each other. Not to mention the monthly birthday celebrations going on in the classroom. I do have alternatives for her but they can't compete with Krispy Kreme doughnuts or cupcakes. I started this diet because I thought it would help her tics. She has not improved at all and as a matter of fact has even gotten worse. We recently discovered she has PANDAS and she is finally starting to respond to the medicines. However, I don't know what to do about the diet. I'm scared to change anything because I don't want to make things worse. And if I do change her diet and she becomes worse I won't know if it's because of the diet changes or the PANDAS (things are really unpredictable right now). I would love to just do gluten free but again I'm scared to rock the boat. Despite keeping her on this yeast free diet (and we do not cheat at all) she recently had her yeast levels checked and they were very high. She's on Diflucan now and I am furious. Why are we killing ourselves if this is not even working? She was also recently allergy tested and came back very allergic to egg. That is the only thing she can have that she really loves. My mom has come up with a blueberry muffin that she loves (made with rice flour and egg). She also eats a waffle every morning (made with rice flour and egg). I cannot take this away from her without replacing it with something else. We can't use egg substitutes and the other things I read you can use to substitute for egg she can't have. I just don't know what to do. This is sooo hard!!!

 

Caring Mom

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Hi Faith,

 

My dd is taking Custom Probiotics (D-Lactate free powder). It has 250 billion CFU per 0.8 grams. I give her 1/4 teaspoon in the morning and one again at night. So she's getting about 500 billion a day (maybe a little less). She isn't on any other supplements or vitamins because she wasn't able to tolerate anything. No matter what I tried, she would react to it. Hope this helps!

 

By the way, since I started the Flagyl again things are looking very promising :)

 

Caring Mom

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Thanks for the cream recommendation. I will have to ask about it.

From the posts on here it seems no one has had any luck with NAET. What about DAN dr.'s? Do they really work? Because I really don't see much if any improvement in the last 9 months. He isn't on a probiotic. Have thought about it but haven't done it yet. What are the recommendations on probiotics?

I dislike the ticcing but can deal with it. However, the anger and tantrums have to be controlled with something. Would also like him to be able to focus better. Currently use Natural Calm too, but really don't see much difference with it.

I really wish I could find something that interests him other than Star Wars and fighting. Have heard so many others find that special interest and whole attitude and behavior improves.

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Sorry for the late reply as i have been away for vacation.

 

In re: NAET. I believe it has helped my son's tics along w/craniosacral, chiropractic, diet modification and lifestyle change. NAET did not reduce his tics initially (BTW my son has been doing NAET for 4 yrs off & on), it was a gradual process. I believe it helped becuz my son has food & environmental allergies, so by treating his triggers it indirectly helped w/his tics. Now, if your child's tics are not caused by allergens, then i don't think it would be as effective.

 

Pat

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Hi Faith,

 

My dd is taking Custom Probiotics (D-Lactate free powder). It has 250 billion CFU per 0.8 grams. I give her 1/4 teaspoon in the morning and one again at night. So she's getting about 500 billion a day (maybe a little less). She isn't on any other supplements or vitamins because she wasn't able to tolerate anything. No matter what I tried, she would react to it. Hope this helps!

 

By the way, since I started the Flagyl again things are looking very promising :)

 

Caring Mom

 

 

thanks, the reason I was asking is because I think I have come to conclusion that high dose probiotics are not for us. from my observation, it seems that since I really upped the dose (30-50 bil per day), that's when the vocals seemed to go haywire. when I didn't give it for a couple of days, he calmed somewhat. so I havn't given it since, BUT, he is still going back and forth with having bouts of vocals. I really don't know.

 

do you notice any correlation with tics and probiotics? I don't think it is just the probiotics, but I do feel it is HIGH dose that may be a problem here. I have some ideas why, and I'm not sure its all die off, because it should end at some point. I'm going to put more on this on another thread here that I notice about acidophilus, but my feeling is that probiotics are immune boosters and I am feeling like boosting my son's immune system is not exactly a good thing "for him"....dang if I can figure out why. but I have long noted and mentioned here that high dose supps (and aminos) just don't seem to cut it for us, we always seem to experience increase in tics. the only thing I can deduce is that immune boosting revs up his nervous system? my guy is one who does not get sick alot, hardly ever. and when he is sick with fever, he ceases ticcing during that time.

 

Kim, if yu'r reading, got any ideas here?

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Hi Faith,

 

My dd is taking Custom Probiotics (D-Lactate free powder). It has 250 billion CFU per 0.8 grams. I give her 1/4 teaspoon in the morning and one again at night. So she's getting about 500 billion a day (maybe a little less). She isn't on any other supplements or vitamins because she wasn't able to tolerate anything. No matter what I tried, she would react to it. Hope this helps!

 

By the way, since I started the Flagyl again things are looking very promising :)

 

Caring Mom

 

 

thanks, the reason I was asking is because I think I have come to conclusion that high dose probiotics are not for us. from my observation, it seems that since I really upped the dose (30-50 bil per day), that's when the vocals seemed to go haywire. when I didn't give it for a couple of days, he calmed somewhat. so I havn't given it since, BUT, he is still going back and forth with having bouts of vocals. I really don't know.

 

do you notice any correlation with tics and probiotics? I don't think it is just the probiotics, but I do feel it is HIGH dose that may be a problem here. I have some ideas why, and I'm not sure its all die off, because it should end at some point. I'm going to put more on this on another thread here that I notice about acidophilus, but my feeling is that probiotics are immune boosters and I am feeling like boosting my son's immune system is not exactly a good thing "for him"....dang if I can figure out why. but I have long noted and mentioned here that high dose supps (and aminos) just don't seem to cut it for us, we always seem to experience increase in tics. the only thing I can deduce is that immune boosting revs up his nervous system? my guy is one who does not get sick alot, hardly ever. and when he is sick with fever, he ceases ticcing during that time.

 

Kim, if yu'r reading, got any ideas here?

 

Hey faith,

 

This is the first time my daughter is on probiotics for an extended period of time since she got diagnosed with Tourettes 1 1/2 years ago. In the beginning we were seeing a naturopathic doctor who put her on probiotics, fish oil capsules and a bunch of vitamins. She went nuts on all that stuff so I stopped everything and we didn't go back to see the doctor again. We started following a yeast free, dairy free, gluten free, corn free diet and she got all her viatmins and minerals from the food. Every time I tried to add a supplement or vitamin her tics revved up again. I couldn't understand why. When she got diagnosed with PANDAS last month the DAN dr had us put her on probiotics, anitbiotics, anti-fungals and Flagyl. We started all of this pretty much on the same day. I was terrified!! She did have a little die-off but it was very minor. So, no the high dose probiotics have not affected her at all which is a huge surprise to me. I don't understand what is different this time around and why she has tolerance where before she didn't. The only thing I can think of is that one of the meds is targeting what is really wrong with her so her body is able to better tolerate what it couldn't before.

 

Like your son, my daughter NEVER gets sick and if she does it's a 12-24 hr virus. She had 2 12 hour viruses this past year. Never a cold or the flu. Her tics also slow WAY DOWN (almost non-existent) during any sickness and then when she's better they pick up again. Really weird.

 

I spoke to my daughter's DAN today and he upped her Flagyl because we aren't seeing the phenomenal results we saw the first time around. He said her body adjusted to the Flagyl somewhat and so it takes more to kill a smaller amount the second time around. She's going to stay on it for a while at the higher amount. I'll update after a while. I just hope to get her stabilized somewhat so we don't have these huge ups and downs.

 

I'm very curious to read your post. Take care!

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