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Calling all Angels


faith
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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.

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Dear Faith

 

what a very special post to introduce yourself. ;) a very big welcome to you!

we are so glad to have you here.

 

I will be back on later (still working) and so just wanted to greet you and lift thanks along with you that your prayers for guidance and direction are being answered, and that you are on the path to finding solutions to help your son.

 

Cheri

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Hi Faith & Welcome. Glad to have you here. ;)

 

I haven't done DMSA challenge tests, but I have done some DMPS challenge tests. I've been chelating for almost 1 1/2 years. I've have posted my results along the way at the two topics:

Chelation Update

Chelation Update-Cadmium

 

 

Also Andy has done challenge tests on his son. I can't recall if any of them were DMSA instead of DMPS. So hopefully he'll be along soon to say more about that. Until then, you can check out some of his posts about them here:

Chelatin Detoxing

Second Urine Toxic Metal Test

Stage 1 of detox is over

Change in our detoxing program

Have an appointment

 

 

Hope some of this helps. Please let me know if you have any questions about my experience with chelation therapy. As to your son's results, you may not see any mercury on the first challenge test. I've only done 3 challenge tests, and my last one in November was the first time we saw anything off the charts. Cadmium was off the charts in my stool test.

 

Carolyn

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Hi Faith, You mentioned that you had tried some dietary changes - removing corn syrup and milk. Did you try removing all artificial colors and flavors? Those can also have an affect on tics, behavior, and overall health for many individuals.

Removing them from our diet has made all the difference in our family.

Best of luck.

Jeff

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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.

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Ask away Faith. It's fine to ask me a lot of questions. I would have to say I've seen no results on the chelation helping my tics. I have seen times where I feel my tics get worse when redistribution of metals occurs. However, I don't see that as a bad sign because it obviously means that those metals are affecting my tics. I haven't seen that happen for quite a while though.

 

They say it takes longer when your older to get all the metals out. However, I've been sharing my results with another individual locally that has a child with Autism. I'm using DMPS, but they're using DMSA. We started pretty much at the same time, and I've seen more metals come out than they have. Two years is the estimate time frame my doctor gave me. I've also been told that transdermal DMPS doesn't work well for adults, but it works great for me.

 

I choose DMPS because it's supposed to cause less yeast issues and no stomach problems. I've heard many children get really bad yeast with oral DMSA & they can have an upset stomach from the DMSA also. I chose the transdermal form of DMPS because I felt it was a slower method of chelating & I had control over the dosage. I had a doctor when I began that wanted me on a really high dosage of oral DMPS, but I didn't feel comfortable doing that. DMSA probably has been studied more, and you can get it over the counter. DMPS takes prescription and must be compounded to get it.

 

Is your son on supplements? When a chelator is given, it pulls good minerals too.

 

Carolyn

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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

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I am not realy qualified to welcome you to this board, since I am fairly new, but your story struck some vital cords in me. My son will be 8 in couple weeks and seems to be in a remission for the last 5 weeks. I hope and pray every day he is over the tics, but I must be prepared if they come back. It depresses me as well, and this is not good for the rest of my family. TV has helped out a lot, as in eliminating it for a week and bringing it back slowly. We have put him on Magnesium, (natural calm) as well as b-complex. He wants to take them, which sounds strange to us, but I think he thinks they are helping him. He is also very slim, and has a very robust and healthy twin sister.

I am rambling, but you should try the Natural Calm and see how it works. Today is another day that we hope he will be tic free, I just wish I could help him more, I know as a parent we would trade places with our kids without hesitation. I just keep thanking the Lord every day he doesn't have ticks and in that same prayer asking that I be able to handle it if they come back.

Lenny

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Faith,

 

Welcome, sorry I didn't welcome you earlier. I received devastating news involving a family member this week (not kids or husband) thankfully.

 

The soul of this forum is so keen to observe the anxious...

to share it with them...

and never pass by unconcerned.

 

This charity can drown out the untold depths of sorrow. You will find so many bright lamps here, with some being the shining jewels.

 

God Bless you, and if I don't post often it's not because I'm not concerned, just dealing with my newest interruption.

 

C.P.

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