[Chemar]

Sorry I can't answer about the krill oil. But I'd sure like to know more about it too. What is it supposed to be good for?

 

Hope you don't mind me cutting in, I wanted to ask Chemar a question too.

 

Chemar, (or anyone else) have you ever heard of a Dr. Zimmer of Zimmer Chiropractry and Nutrition.? He has a site on-line and does phone consults about your health concerns. He sounds quite knowledgeable and sincere. Just curious if you know. and what you thought. He has answered some e-mail question about a product and answered himself and has offered alot of advice and interest in my questions (not through a consult, just answered to try and help--no charge, I mean).

 

Thanks,

Faith

[Faith]

Is there smiley face with a noose around its neck? Please forgive me all, I'm really out of it tonight, I may not make any sense. What you may sense is just sheer desperation. I think I would be able to walk this path a little easier if my little one wasn't showing his symptoms so much. He's been home last two days with a sore throat so I am probably more keen to them, being with him all day. Does anyone think he's doing some head shaking and grunting a little more obvious because of the throat? Its not a bad one, I've checked with a flashlite alot. He just said it hurt when he swallows but much better today. (He has had the test for ASO titres a while back and PANDAS did not seem to factor in, just to clarify). Oh God, I hate the way I feel right now, I don't even know what to write.

 

Thanks Kim for that thread with all the info. I think I have read some of that here and there but it is really full of interesting stuff. Is most of it just Walsh's opinions--can we take most of it for fact?

 

Carolyn, thanks for that instructions from Dr. Neubrander, I never saw that before. Do you have any idea why they use the METHYL B12 and FOLINIC. Is there a good reason? I'm still confused about that and why this other on-line doc I corresponded with seemed to think it not necessary for what we needed it for.

 

Cum Passus, may I take this opportunity to say I am sorrow for your recent loss, and hope things are settling down for you. I am wondering how your son is currently doing, I know you mentioned he did well since using the natural calm. How old is he? Did you say your husband just started a head shake at this age? Hmmm.

And may I ask what you meant by yur son exploding with tics after shots? What kind of shots and at what age? Curious.

 

Sydsmom, I'm glad yiu popped in to answer. May I ask what age she started the MB12 and who and why that was recommended? How long did it take to see any kind of tic reduction, and do you really feel it was due to that? When you stopped, did anything come back? Yes, its money and I wonder if that would be well spent elsewhere since I am getting conflicting info from another doctor who says high oral B12 and folic acid would work just fine for my son. I just don't know how to go about this one. When you say your daughter is doing so much better that only family would notice, I would take that so gladly. I think that's why I'm so on edge right now, my son's head shake and grunt is just showing too much and I just can't figure out why.(I have him soaking in an epsom bath right now) Also, what other things did you do or give that you think contributed to her improvement? Thanks.

 

I've been doing so much, and I guess I'm feeling so impatient about having to wait for our results of recent food sensitivity testing and metal testing. The next visit with the naturo is when I guess she will discuss our case with us and her findings and recommendations. I'm losing my head here, and feeling such a loss of confidence. I'm scared of this chelation thing. I don't know how I feel about all this. I pray its not an issue for him and we can help him another way.

 

Sorry for the downer, I feel bad for the new fella that wrote today. I can't be of any help like this. Hope someone else can. It seems like there are so many of us dealing with this issue, how come I don't know anyone around me though? When I look around, why is my little boy having this. I'm sorry, I'm just so heartbroken and scared that nothing is going to work. I pray tomorrow is a little better.

 

Chemar, if you read this post, may I ask why you didn't do any chelating with your son. And please help me understand how the natural detox methods you use work. Thanks.

 

Faith

[Faith]

hi and thanks girls for the input. This is so tough to understand, you need an mba in chemistry and I'm a college dropout (I filled out the application and never went!!! ,

 

Kim, the article you accessed, how'd you find that--the author Dr. Boris is our doctor!

One would think I'd get all that info from him, but, I don't know, he basically justeshowed my a diagram of the methylation process and what we could do to correct it. You know at the moment you're in the docs office, you're a little tongue tied and don't know what to ask without sounding stupid, so I did go home and look up alot of stuff (about the MTHFR and the B12 protocol by Dr. Neubrander. that Carolyn mentioned, (also saw the videos) but what I really want to know is, is this going to be beneficial for the tics. I'm still not sure what it is exactly going to do, because I havn't seen anything yet.

 

But thanks, Carolyn, I will have to ask alot more about that way of giving the shot. I did read the stuff by Dr. Neubrander, so I was surprized when our doctor said to give it anywhere. Our next visit is next week, I think, so I will have to address all this.

 

You are right Kim, what you said about the clues the gene mutation provides, that is what I'm trying to figue out, what is the issue there that is the clue to my son's problem. I think I'm harping on this because I think there is something there, I just can't get it yet. It's something about this and his own ability to detox on his own. Does anyone here think that our kids (with tics) have heavy metal issues, just not as severe as the autistic spectrum? I mean if there are similar issues, did we just escape autism narrowly? Kim, I know you are interested in the subject, I'd be interested to know your thoughts. Also, there is some other references to the MTHFR stuff in the book "Evidence of Harm". Was that you who said you were reading that a way back? Well, if you still have the book, its in there if you're interested.

 

Faith

[Faith]

Hi Kim,

I havn't figured out how to use those smiley faces yet, but if I did, I would choose the one that looks "confused" and then wacked out!!

 

I am really nutsy today, as I am neeeding to understand not really what the MTHFR is, but how and if it should be treated, and what the implications on tics could be. As I assume you read, we are using methyl b12 shots (along with FOLINIC acid) as this was recommended by our DAN doctor. (Just to clarify, my son is not autistic, we just went to this doctor for the tics, and he is also an allergist and immunologist. I am assuming he uses this protocol because this is what they use for the autistic kids who they have found to have a high percentage of them have this gen mutation, (not all). I believe he is one of the doctors who did the initial research on this.

 

My problem is that we have been doing this for about three weeks (shots --previously intranasally), and I really haven't seen any improvement in the tics. Actually, I feel it is the opposite. After the first 10 days is when I noticed the second tic start, and I got nervous and stopped the B12. I informed the doctor and he said it shouldn't cause more tics because it is natural, (whatever that means), but said I could stop if I felt better about it. So I did for next three weeks, I think, but I don't think anything happened one way or another. But then we started again with the shots, thinking it would be more potent (just my gut feeling).

 

On another note, I recently asked a question of a doctor on-line (let's just say he seemed to know exactly what I was talking about and sounded like he he knew alot about this since he has a degree in chemistry and did a paper on this subject. When I mentioned the part of my son getting the methyl -b12 shots, he thought this was unnessary and could be treated with oral b12 and folic acid. He believed the FOLINIC acid was not the way to treat. He even told me to take the e-mail info he gave me and bring it to the doctor who could contact him if he wanted to. So I am so wondering about all of this and am feeling quite helpless and overwhelmed about it. Sorry to tell you all, but I wonder why you had an interest in this. Do you know of anything that might help? As I write this, I don't feel my son has responded positively to this and am not really touting this yet. I wondered if anyone else has experience with this protocol?

 

So I have to go and question all the docs I deal with--I know you know what that's like!

 

Were you thinking of this for your child?

 

Also, Carolyn, if you read this, this info is in addition to my reply on the other thread of Pearldoves.

 

(leaving now to get a hard drink!)

[Travel]

Hi Patty,

I'm kind of new here and havn't spoke to you yet. You sound like you have some of the same as issues as me (with our sons). You mention your child has a head nod, as I am dealing with that too, would you mind telling me what you have done that you think has contributed to minimizing it. Has it left the building, or still around. I've ready many of your posts. Do you have a minute for a brief history? Thank you so much.

 

Don't think I have any tips about traveling, except pray alot!

 

Good Luck,

Faith

[Late Onset and Late Diagnosis]

Thanks Carolyn,

very interesting. You give me something to think about. But the doctor did mention that I might see that (the pink urine). I should ask about that to him. He is supposed to be very good, and I believe one of the pioneers of this DAN type of testing and treatment, but I do wish he would be more explanatory to me about all this. As I said, we are essentially allergy patient, but the symptom we are treating is the tics (the vocal sounds were the first, but since have escalated to blinking and head nod, with blinking being over for the most part, but the nod is the most prevalent). With all the natural treatments, supplements, diet, allergy precautions and the like, I am so frustrated why this is still going on, I would think I could at least keep it to a minimum. He has a sore throat since yesterday, and I feel the head nod was much more yesterday, even my mother commented on it. I have to watch that (the sore throat).

 

By the way, we give the shots in the arm. He basically said we could do it anywhere. But I did do all the research of Dr. Neubrander and his protocol. O gosh, I may have to look more into it and fine tune it. Thanks for the tips. I wondered about the methylation issue having to do with the detox pathways, (mind you the doctor never discussed this with me, the main issue about the B12 was to basically reduce his homocysteine levels which is a strong indicator of stroke and hear attacks later on. So do you think by correcting this pathway, his glutathione should start kicking in and maybe help him detox on his own abiilities, and maybe improve the tics? Any knowledge or opinions you have are appreciated.

 

If anyone else has done methyl b12, I'd also like to hear of their experience and knowledge.

 

Thanks all.

Faith

[Late Onset and Late Diagnosis]

Hi Carolyn,

Hope you don't mind my cutting in on this topic, but this is one of the questions I was going to ask of you too.

 

My son is also on methyl B12 shots for almost a month now. I understood that it was part of your regimen too, and was going to ask why you take that. He gets it also for methylation problems, apparently he does not methylate the B12 so he gets it in the methyl form. This was found on the bloodwork done by our DAN doctor. I guess they test for something called MTHFR , which is a gene mutation as I understand. This means the B12 gets stuck and does not convert to the different things in the body because having this mutation means you lack an enzyme that contributes to this. Is this what you were found to have? If so, that's interesting to me. Finding someone else who has tics and that gene mutation. This is something they usually test for on the autistic kids because the research showed that a certain percentage of the autistic kids have this, although it is also found in a percentage of neurotypical community as well. (don't have the percentage handy right now).

 

I'm curious to know why and how you were found to have this too. We do shots every other day (also gets a folinic acid pill) First we chose a intra-nasal form (spray into the nose), but I just wasn't feeling like it was doing anything and did some research and just my gut feeling was telling me to try it in the shots form. So we switched, and I think it must be more available to him as his urine is usually tinted pink soon after the shot. I didn't notice this with the nasal spray.

 

So I guess you answered about what it did for you tic-wise, no more or no less? I would love to see something positive from it. I like the increase in appetite thing, my guy could use it!

 

Look forward to your response and hope this helps Pearldoves as well. Thanks.

[Late Onset and Late Diagnosis]

Hi Pearldoves,

I'd also like to ask you if you took ADD medication as a youngster since you said you had ADD as a child.

Sometimes those meds (along with some antidepressants) could cause tics to come out in vulnerable people. I believe it is called diskinesia? You could research that. Because it is interesting that you were much older at onset.

 

You say you saw a nuero--have you considered a naturopath? This kind of doctor may have some good advice for you and your situation. Most are not covered by insurances, but if you could afford a consultation, it could provide some good direction. If not, try to follow the many suggestions in the past threads on this board. You will learn alot.

 

Good Luck.

 

Faith

[PANDAS treatment and worsening of tics]

Rachel,

I too am curious about what criteria they based your child positive for tourettes (or did you mean PANDAS)

PANDAS would suggest your child had a strep connection. Was he tested for high ASO titres? If he has been on antibiotics for a week, I think symptoms would have diminished, not escalated. Please clarify this for someone here may be able to help you with more info and direction.

 

Also, some ADHD meds can cause tics to come out in those vulnerable and I believe certain antidepressants can cause this too, and sometimes can be permanent. Please do your own research on this. Is the antibiotic your child taking supposed to be for long term or short term? Also, how old is he?

[Can a child tic ONLY while sleeping?]

I just wanted to add, if it is a clicking sound, I read in the Doris Rapp "Is this your child" book that one or two kids did that and found that milk (dairy) was the culprit. I always felt that milk causes mucous in the throat/esophogus, so maybe you could try that for a week or two.

[Calling all Angels]

Thanks Carolyn,

Yes, the naturopath started him on a liquid mineral kit by Body Bio. (We are not doing any chelation yet, just the test to see where we stand) I suppose that is in preparation should there be any metal issues. Also, I'm not even sure what method she will recommend as we did not get any results yet and I guess it depends on that and what other issues he has. As a side note, I consulted this naturopath because I just wanted to cover all bases. The DAN doctor is very good, however as I mentioned, the course of action he takes is one thing at a time, and we usually have an appointment once a month. I went in as an allergist patient because at the first visit my son just started with a low vocal and I wanted to see if allergies showed any connection. So far we tried Previcid, (he seemed to suggest it could be acid reflux) I didn't think that any effect. Then we did an evironmental allergy (Serial End Point Therapy) provocation. He came up moderate to mold and cat (Yikes, we have one!) But we were given a nasal spray with his neutralization dose, plus we take all the usual precautions and clean up at home. I'm not too sure if this has helped any either. So after that, the elimination diet, which I didn't see anything dramatic happening, since he had started an eye blink/wink (since gone) but I have kept some diary notes and am not sure if this is due to anything in particular. Mind you, I don't think any of this is wasted efforts, it can only be helpful and healthier anyway, so I will forge ahead. I have some theories as to the whys and woes but I'll save that for another time.

 

Also he is on Nu-thera (with P5P and mag.) and Nordic naturals pro-epx fish oil (given by DAN doctor) We also used a high potency multi powder from him that I think they made up for autistic patients called essential 19. I didn't think that was so great while he was on it, I wondered if some ingredient wasn't good for him (lithium?) I also give probiotics from Klaire Labs and a little extra magnesium (sometimes the Peter Gilliums) This has been the basic supplement plan for at least 9 months or so. And by way, thank you all for I did learn alot about what could be beneficial through this forum.

 

Now, as I said I forged ahead with the naturopath because we were getting so upset and depression was overflowing my home, so I just wanted a "second opinion" I guess. This naturopath knows we were working with a DAN doctor and even does know him as they are in the same area. And from what I understand this naturopath said she dealt with this issue with her own son (who is now 15). So she seems to know the drill on what to test for and do. The DAN doctor said we could talk about metals on next visit, and I will do that to compare notes, but as I said I went in there seeking allergy treatments (and I did this because I understand if you go in as an autistic spectrum patient, they charge like $750.00 up front and maybe that is why he is not going full speed ahead with us. (My guy is not autistic, just to clarify) Both the naturo and the DAN doctor's way of testing for metals is with the DMSA uring challenge test, by the way.

 

Oh gosh, I could go on but I'll try to slow down. And I want to give this info also for others who are seeking and curious too.

 

Faith

[Can a child tic ONLY while sleeping?]

Hello Dedee

I'm new around here but I wanted to respond to your post. My little guy always wants to sleep with us too. Either that or I have to lay down with him in his room till he falls asleep. Then he just shows up during the night or the wee hours anyway! (I confess, I kind of like it too--so cuddly!)

 

As to the noise you say you hear at night, my son did that for a time this past summer, (which is when his vocal ummm had cleared away. However, I did still hear a little squeak and low hum while he was going to sleep. That didn't bother me tho, I was so greatful he wasn't doing it during the day anymore. (although

we have recently had another flair with that, he doesn't really do that noise at night anymore.) Does your son suck his thumb? Mine does at night in bed, and also holds a blankie, so if that's the case, he may be the type that may make that little noise to sort of comfort himself as he falls asleep. The only other thing I can think of is if you say he has asthma, maybe your bedding is not friendly to him, and you may need to use some hypoallergenic dustmite covers or something. It cant't hurt. Also, do you have a pet that sleeps in the room or under the bed? You might have to clean under there more often.

 

Just brainstorming, I don't think tics are common while totally asleep, but just my thought. I wouldn't worry too much if he's not doing anything during the day. How old are your boys?

[Calling all Angels]

Thanks for the welcomes. (shy face)

 

Thanks Carolyn, for that info. Oh, it feels so funny to actually be talking to you. I read so much of your experiences, you sound so bright for a young girl. I think I am going to be asking alot of questions of you so I hope that's okay. I am taking in that info on Andy's thread. I have read much of his posts too, and hope he will be along to update me on how his son fared on the chelation. Has this process helped your tics in a positive way? Is it taking a longer time because you are older? Why don't you use DMSA as opposed to DMPS. I thought DMPS was not really studied on children, and DMSA is considered safer?

 

Jeff, I followed as much of clean diet as I could with my son (halloween is his favorite holiday!) But he has been pretty compliant over time. At first when I limited the obvious dairy (no milk, hardly any ice cream depending on how he was doing, and very limited sweets and cakes, artificial juices and let's just say limited the flavors and colors, (along with supplements) it really did seem to do wonders. That vocal lessened within a few days and by week two was gone. But when it came back a little right before school started, then I made an appointment with a DAN doctor in our area. I am in New York, so I think accessability to everything I suppose is much easier, being in a major city. One of the first things he did try with us was an elimination diet (GFCF, basically everything! and we were 100% compliant.0 However, by week 4, the tics were still present, and so we didn't feel that was any indicator of anything (if he showed improvement, we would have introduced things one at a time). I was really surprised. I didn't even think his demeanor/behavior changed that much. BUT, I still follow these diet rules for the most part. I probably have more to tell, but don't want to confuse all at once!

 

So now, under the guidance of a naturopath, we are going to do the ALCAT food sensitivity test. I figure if I didn't see any results on an elimination diet, maybe this will uncover something. I'm so tired of guessing and being afraid to give my son foods. I can really relate to the mom who recently said that the grandma said "soon all your mother is going to give you is birdseed", that made me laugh, I know my mother thinks that too. My son is very skinny, and my mother would give him rocks if he would eat them just to make him gain weight!

 

Will keep you posted.

[Calling all Angels]

Hello,

I am a newbie here, and just wanted to say hello and introduce myself. I feel like I already know many of you so well as I have been reading and learning here for a while now. I have a seven year old little boy that I am so very worried about. He has had some minor tics from age 3 1/2 that have come and gone, and last year a vocal that had me very upset, expecially after his teacher pointed out that it was becoming noticeable. I think you all know what that feels like. This put me to work looking for whatever information I could find to help my son. (after the usual ped. and ped. neurologist visits) I wouldn't and couldn't believe that there was nothing.

 

So long story short, I found Shiela's book at a library, and read here, there and everywhere. Thanks to you all and your efforts and willingness to share, I am farther along in my research and experimentation than most newcomers. It really is an invaluable service to educate and provide support to those seeking, especially when it is for our children. The more minds jumping in with ideas, the better.

 

I thought I was on the right track with supplements and diet control (removed milk and high fructose corn syrup and replaced with healthier alternatives). His symptoms really seemed to respond to that and he was doing great all summer. Then right before school, the vocal reared its ugly head (although a little softer and less obvious). But I couldn't ignore it and found a DAN doctor who is also an environmental allergist and immunologist. He has a course of action for my son, but he likes to implement things one at a time, and his symptoms started to escalate. He had some eye blinking and then a head jerk that brought me and my husband to our knees. (and yes, Chemar, I did pray and pray!) Faith is all I have, and I believe that God will help me onto the right path. I too, like so many of you, believe that this forum is a part of it. People helping people has to be.

 

I'm not sure why I never had enough confidence to post; I was always so emotional and scared and I guess I felt I didn't really have anything to contrubute. Even now, I feel a little nervous, but I am here now and hope I can come out of the shadows and perhaps be of some help too. I have a lot of questions, and would love to bounce some things off of you all. I am very impressed with the caliber of minds and the genuiness of those on this board.

 

As I said, we are not out of the woods yet, but have started with a new naturopath who has initiated some testing. (my old one recommended her, as she did not do the kind of testing we needed, i.e. food sensitivity, yeast, metals) Last couple of days have been somewhat better (less symptoms showing) I am always relieved when he tics much less. I'm still in the process of figuring out the rhyme and reason.

 

Of course, I welcome any ideas. Maybe the first question I will ask is has anyone here done the DMSA urine challenge test for metals? We have just completed that a few days ago, but do not know any results yet, I was really apprehensive as I was afraid he might react with more ticcing, but all seems to be well, and as I said, he actually seems a little better. Imagine if that had something to do ith it?!

 

Thank you and God bless.