overwhelmed

[Guest daniel]

My wife and I do not agree on how to treat our child. His tics are not so bad, which is one reason she feels that way. I am reading so much information.

 

It seems like some of your kids still have some tics, also. What should I do?

(edited)

[Chemar]

Dear Daniel

I am just checking in here briefly as I have guests today.

 

I really feel for you.

 

One thing that Claire and I ALWAYS try to stress here is the need to work WITH a qualified physician in these things, obviously, because of our preference for natural treatments, we suggest doctors who are specialised in these areas, and that is also why Sheila has that excellent thread at the top of the forum for finding medical help.

It really is very frustrating for you and your child when you are trying things randomly and dont have a clear plan of action, and trying to guess your way thru the maze.

 

so, my advice to you is to stop and regroup.

 

First, if your child does have Tourette Syndrome, as hard as it may be to accept it, your child will tic. The only thing that treatment, whether with prescription meds or supplements or whatever does is to help to reduce the intensity and frequency of the tics. Sometimes TS tics go into remission, either with time or treatment, but people with TS tic and that is a reality that a parent simply has to face.

 

For my son, his tics and OCD were so intense that we simply had to do something, because his quality of life was severely impaired and he was suffering physical injury and psycological trauma from it all. Thanks to our physicians and my research combined, we were also able to find out about the mercury and yeast in his system which, whether or not he ticced, it was necessary to eliminate. The dietary changes were also a general health thing, eating natural food as opposed to all the artifical garbage just makes sense, and the fact that it also helped with the tics and OCD was a bonus.

 

I always saw my son's treatment as a holisitc thing....overall improvement of his health and wellbeing...not just to help his tics and OCD and I always kept the realistic approach that, with the clear genetic link for his TS, I was not trying to "cure" his tics....only to decrease their intensity so that they did not cause him injury and also to help him cope socially.

 

If your child's tics are mild, and not bothering him or your wife, then honestly, perhaps you do just need to relax about it and adopt a wait & see approach. Hopefully it wont get worse, and no further action will be needed.

By stressing yourself and them out, you may well be making things worse.

 

I fully understand your desire to make everything "perfect" Daniel....you are a loving father and as parents we hate it if something is "wrong" with our children. But we also have to be realistic and especially when whatever is "wrong" is not life threatening or debilitating or seriously affecting the quality of the child's life....well then we sometimes just have to accept what we cant change and just focus our energy on loving our kids with everything we have in us and doing what we can to improve their lives, without driving them and ourselves nuts!

 

So, honestly Daniel, just try to relax and decide, hopefully with your wife's agreement to find a good integrative doctor who can work with you to improve things for your son's overall health, while accepting that he may have TS and that you will just have to adopt the best attitude that a TS parent can....and that is that it IS OK TO TIC.

If the doctor finds that your son's tics are NOT TS but being caused by an underlying problem that is treatable, then the doctor will have the best knowledge on which tests to run, and based on results, which treatments to follow.

 

 

If you want to private message me so we can talk further and so you can vent, just click the little PM box at the bottom left of my post.

 

I am praying for you and your son and your wife daniel, that you will have clear guidance on how to proceed.

God Bless you

[Claire]

Daniel,

 

Please tell your wife that my son has not had a single tic in 18 months--I believe 100% they are gone forever with the treatments that we did. I am not sure why she still thinks he tics? Like Chemar I continue to post here to simply help others. Plus I also am working to eliminate the food restrictions and sharing my journey there.

 

Heather's son no longer tics (he did yeast)

 

Jennifer's son stopped ticcing completely when he had treatments.

 

Alison's son's tics are either gone, or so minor that only she knows they are there--meaning no social impact for her son.

 

Other's here are still early in their journey--seeing great improvement.

 

As for occasional outings with icecream, I strongly recommend that you get Houston Nutriceuticals AFP Peptizade and Zyne Prime. Some children who react to casein (milk) and wheat/gluten find they can have them occasionally (some even regularly with them). Then just WATCH--maybe he will be just fine.

 

But Chemar is right--I found with my own husband that he trusted a doctor to guide this, not me. The right doctor can educate her. This is clearly hurting you and your family, no easy solution.

 

edited after reading Chemar's post: Yes, some children will always tic. No guarantees, but if you can minimize it, it will can their life easier. You won't know without trying. Over time, you have to find the balance in their lives of ticcing vs restrictions.

 

Claire

[Ronnas]

Daniel,

 

I really feel for you...I can remember clearly my own desperation 3-4 years ago. All of the treatments, supplements etc that we did for my son was done under the guidance of our open-minded pediatrician and a naturopath doctor. What works for one child may not work for another...having gudiance of a professional is important.

 

My son had severe tics 3-4 years ago...he was hospitalized many times and was even being investigated for neurodegenerative and metabolic disorders due to the seveirty of his symptoms. Although at times he does have some tics still they are very mild and for the most part I am the only one who notices. Although believe me there were times that my son's tics were VERY upsetting it was more than tics which led me to check out alternative therapies. My son is a PANDAS kid and needed alot of work on building his immune system and because he regressed alot at the age 5 we were very concerned.

 

Changing my son's diet (eliminating dairy being the most important) initially made a huge difference. My family was not initially on board with the dietary changes until we had a bowling night one time and pizza was served...my son changed before our eyes and everyone was a believer. Trying to do a complete food elimination diet does not sound too feasible for you right now...maybe a single food elimination diet would be more helpful. For example just eliminate one thing at a time for a week or two and then re-introduce and see what the reaction is.

 

It is essential to remember that MANY children do tic...it does not mean they have TS. Spring is a particularly bad time for many kids due to environmental allergies. Putting too much attention towards the tics may also make it worse as your son may be aware of the stress in the home. Are the tics bothersome to your son, is he adjusting well in school...it may be time to take a break, find a doctor who can guide you and find a compromise with your wife.

 

Really I never thought I would ever say this but in a way my son's tics are just another part of him...easy to say when they are mild now but with time we have all accepted them and him which has been an important part of our journey.

[Chemar]

Hi Daniel

 

just checking in to see how you are doing? I hope things seem less overwhelming

 

remember we are here to support you Daniel. We have all been at that point of despair and frustration and so we really do understand

 

[Andy]

Daniel my wife was not ready to do the treatments at first either but in time she saw the medicine that was behind the treatments and accept them. I suggest that you just go to a DAN doctor and let him map everything out for you. You will not have to do a thing but follow the procedure. All of the DAN doctor research is out in the open now and is easy to access. I wish this was the case for us when we started for it would have saved alot of time and money. The tics are not the only issue with metal posioning. Research around the world have found traces of mercury in cancer cells, etc...........I could go on and on but time does not permit. Just ask your wife to let your child be tested with what we have discussed here and the results will help both of you to make a decision.

[mmazz]

Daniel;

 

I read your un-edited post yesterday and it broke my heart. As a newbie I share your pain and I too experienced the parental differences. I never thought that my husband and I would ever be able to even speak to each other again. We both had different ideas and of course mainstream medicine did not offer us any options. It was my husband who found this site and from there this forum gave me the opportunity to question, vent, cry, have hope and try. My first try was TV and that was tough. Claire, I'm sure she remembers, was my shoulder to cry on when the teacher, upon my direction, told my son he could not watch the movie in school and gave him a book within the same room to read while the other children watched TV. She told him that his mother did not allow him to view. My son hated me that day, and his tics were even severe because of this. I felt horrible. My older son gave me some profound advise and said to let him be him. Albeit hard, but I had to let go of the worrisome of tics and embrace his every move. Once I learned to let go of the that the stress level lessened and the home started to become a happier place. Remember that mind, body and spirit is connected and that family harmony is the best medicine. Discovering the root cause of tics is not a race. THere is much information here and each child is like a fingerprint...all different. You will come to notice what cuases his tics in time..don't drive yourself crazy. We all need a hug and to hear that it will be alright, my husband could not do that for me, not I for him because we were living in fear. Once we realized that tics are not life threatenting and our fear was screwing up our lives, we were able to come to grips and live.

Now if you choose to test or not that is your decision, but a healthy diet is a must. But remember middle of the road it. Explain to your son that "treats" are just that. Look through your helath food store and chose healthier snacks. Keep fresh berries washed and out for his little fingers. Chose whole grain breads over wonder bread. Get rid of soda or colored juices and offer fresh juices and water. Make sure your son eliminates his waste daily through eating fiber not OTC meds so that toxins do not build in his body. If you can achieve this, perhaps the treats will be just that ....treats. And you will feel more comfortable giving him healthier treats like soy ice cream or berries in a blender with ice for a yummy slurpie. Your imagination is the limit. Oh and bring him into the kitchen and let him participate. This will bring the two of you closer and give the wife some time to herself..wives need that you know

Good luck in whatever you chose to do and remember we are all here for you.

 

GOd Bless,

 

Marie

[kim]

Just to add to Maries post-oldest son is really into making smoothies. He uses the Stoneyfield Organic Plain yougart, kiwi, strawberry, and bananas. They are totally delicious. At first he was using too much ice, after about the 3rd time, he has these things down to an art. He makes them for himself and 2 of the neighbborhood kids a couple of nights a week. I am looking for the tupperware containers that you put your own stuff in to make popsickles, hoping I can get my non eater to try one. Both my husband and I love these too. I was telling him, with something that tastes this good there is just no reason to eat the garbage ice cream I used to buy.

 

I am still on the anti soy thing. The articles I read about the content of maganese in the soy formula, creamed peach and turkey meat baby food, along with the fact that florinated water intensifies the absorbtion of maganese and the possible neurological effect, and with possible over load of metals from vaccines, is quite compelling in my situation. When I first posted links regarding this, mostly taken from Dr. Mercola's web site, it didn't make sense, since it appeared my children would have a maganese overload, yet due to Oldest sons "second ankle bone" it suggested a maganese deficiency. I went back and reread "My view is that it is the higher valence MN (biounavailabe) the causes the body to shunt the normal use of bioavailabe MN thus causing a toxic buildup for which we have no solution (yet).

Big problem".

The research on this subject is thin, but something I am paying alot of attention to. If anyone can post the the amount of maganese in regular infant formula, I would really appreciate it. I feel right now, like if there is a family history of issues our kids deal with ie. possible problem with eliminating metals, Soy infant formula and high maganese baby foods should be avoided, in future generations. I hope testing will give me some clues if there is anything to this theory in my kids. I wonder if my boys are able to utilize maganese now, due to what may have happened to their systems in the first 6 mos. of life due to soy formula having 200 times the amount of MN of breast milk, and being mixed with florinated water. Soy infant formula sales have also doubled in the past 10 years. Didn't mean to go off on that tangent since it does'nt seem to apply to most here, as there was not a response to earlier post. I know Andy has done some reading about soy, as his remark about being cautious with soy is what tipped me off. Other things mentioned; link between lead and asthma, black and green tea(high in flouride and aluminum) found to increase MN and copper absorption, while decreasing zinc, calcium, and iron absorbtion(my oldest stopped drinking green tea as he said it made tics worse, this was long before I read any of this. One of the reference links is titled "Fluorides, of course, cause zinc deficiency". Tons of things to consider in those articles.

 

Kim

[kim]

I had to let you all know what I learned about a wonderful father . Daniel and I had a marathon discussion last night. He was hoping I could shed some light on some things for him. I was hoping I could offer him support and share some of the things I have learned from the wonderful people on this forum. Was I in for a surprise. Daniel is running circles around me. He has removed carpet-gone to hard wood, air cleaners in every room, matress/pillow covers, has had allery testing, Great Plains Oat Test, yeast testing, feingold diet, food retrictions etc.etc. I had underestimated the depths of Daniels knowledge regarding his son's tics. He is articulate, focused and and truly driven to do the best for his son regarding treatments and the emotional impact versus potential improvement. Daniel has a young family, works, and is doing tons of searching on the internet which we all know takes it's toll. I just don't think he has time to give a lot of background, so I thought he was new to all of this. My apologies Daniel. I think our conversation was way more beneficial to me, than the other way around. If he has time to share his future experiences; he has some treatment plans in the works, I think he will be a real asset to the newer people here who are trying to find their way through this maze also. I just wanted to thank him for sharing so much with me! When he says analytical, he's not kidding and I"m sure his son is going to recognise great benefit from having the wonderful balance of the parents he has.

 

Kim

[Guest crabbywun]

Daniel,

 

Please tell your wife that my son has not had a single tic in 18 months--I believe 100% they are gone forever with the treatments that we did. I am not sure why she still thinks he tics? Like Chemar I continue to post here to simply help others. Plus I also am working to eliminate the food restrictions and sharing my journey there.

 

Heather's son no longer tics (he did yeast)

 

Jennifer's son stopped ticcing completely when he had treatments.

 

Alison's son's tics are either gone, or so minor that only she knows they are there--meaning no social impact for her son.

 

Other's here are still early in their journey--seeing great improvement.

 

As for occasional outings with icecream, I strongly recommend that you get Houston Nutriceuticals AFP Peptizade and Zyne Prime. Some children who react to casein (milk) and wheat/gluten find they can have them occasionally (some even regularly with them). Then just WATCH--maybe he will be just fine.

 

But Chemar is right--I found with my own husband that he trusted a doctor to guide this, not me. The right doctor can educate her. This is clearly hurting you and your family, no easy solution.

 

edited after reading Chemar's post: Yes, some children will always tic. No guarantees, but if you can minimize it, it will can their life easier. You won't know without trying. Over time, you have to find the balance in their lives of ticcing vs restrictions.

 

 

 

vvv

 

Claire

8255[/snapback]

[/quote

[Guest crabbywun]

My son (Age 6..will be 7 in July) has been having TICS for about 6 months..It originally started out with both eyes and then decreased to just his left eye. Recently it has gotten progressively worse to where now he is occasionally taking heavy breaths and blinking more rapidly.

 

Let me say that I am simply amazed at the submissions in this website. It is really a source of comfort becasue we have been overwhelmed with the thought of what he will got through if these continue. Can anyone tell me a good book on how to go about following such things as the Feingold Diet? We are also considering a holistic doctor to assist us and RAST testing for allergies. We'll do whatever it takes. We live in Pennsylvania so if anyone locally has recommendations we appreciate it.

 

 

Thanks so much.

 

Daniel,

 

Please tell your wife that my son has not had a single tic in 18 months--I believe 100% they are gone forever with the treatments that we did. I am not sure why she still thinks he tics? Like Chemar I continue to post here to simply help others. Plus I also am working to eliminate the food restrictions and sharing my journey there.

 

Heather's son no longer tics (he did yeast)

 

Jennifer's son stopped ticcing completely when he had treatments.

 

Alison's son's tics are either gone, or so minor that only she knows they are there--meaning no social impact for her son.

 

Other's here are still early in their journey--seeing great improvement.

 

As for occasional outings with icecream, I strongly recommend that you get Houston Nutriceuticals AFP Peptizade and Zyne Prime. Some children who react to casein (milk) and wheat/gluten find they can have them occasionally (some even regularly with them). Then just WATCH--maybe he will be just fine.

 

But Chemar is right--I found with my own husband that he trusted a doctor to guide this, not me. The right doctor can educate her. This is clearly hurting you and your family, no easy solution.

 

edited after reading Chemar's post: Yes, some children will always tic. No guarantees, but if you can minimize it, it will can their life easier. You won't know without trying. Over time, you have to find the balance in their lives of ticcing vs restrictions.

 

 

 

vvv

 

Claire

8255[/snapback]

[/quote

8464[/snapback]

[Guest crabbywun]

My son (Age 6..will be 7 in July) has been having TICS for about 6 months..It originally started out with both eyes and then decreased to just his left eye. Recently it has gotten progressively worse to where now he is occasionally taking heavy breaths and blinking more rapidly.

 

Let me say that I am simply amazed at the submissions in this website. It is really a source of comfort becasue we have been overwhelmed with the thought of what he will got through if these continue. Can anyone tell me a good book on how to go about following such things as the Feingold Diet? We are also considering a holistic doctor to assist us and RAST testing for allergies. We'll do whatever it takes. We live in Pennsylvania so if anyone locally has recommendations we appreciate it.

 

 

Thanks so much.

 

Daniel,

 

Please tell your wife that my son has not had a single tic in 18 months--I believe 100% they are gone forever with the treatments that we did. I am not sure why she still thinks he tics? Like Chemar I continue to post here to simply help others. Plus I also am working to eliminate the food restrictions and sharing my journey there.

 

Heather's son no longer tics (he did yeast)

 

Jennifer's son stopped ticcing completely when he had treatments.

 

Alison's son's tics are either gone, or so minor that only she knows they are there--meaning no social impact for her son.

 

Other's here are still early in their journey--seeing great improvement.

 

As for occasional outings with icecream, I strongly recommend that you get Houston Nutriceuticals AFP Peptizade and Zyne Prime. Some children who react to casein (milk) and wheat/gluten find they can have them occasionally (some even regularly with them). Then just WATCH--maybe he will be just fine.

 

But Chemar is right--I found with my own husband that he trusted a doctor to guide this, not me. The right doctor can educate her. This is clearly hurting you and your family, no easy solution.

 

edited after reading Chemar's post: Yes, some children will always tic. No guarantees, but if you can minimize it, it will can their life easier. You won't know without trying. Over time, you have to find the balance in their lives of ticcing vs restrictions.

 

 

 

vvv

 

Claire

8255[/snapback]

[/quote

8464[/snapback]

8465[/snapback]

 

My son (Age 6..will be 7 in July) has been having TICS for about 6 months..It originally started out with both eyes and then decreased to just his left eye. Recently it has gotten progressively worse to where now he is occasionally taking heavy breaths and blinking more rapidly.

 

Let me say that I am simply amazed at the submissions in this website. It is really a source of comfort becasue we have been overwhelmed with the thought of what he will got through if these continue. Can anyone tell me a good book on how to go about following such things as the Feingold Diet? We are also considering a holistic doctor to assist us and RAST testing for allergies. We'll do whatever it takes. We live in Pennsylvania so if anyone locally has recommendations we appreciate it.

 

 

Thanks so much.

 

[Spring]

Hi crabbywun,

 

Welcome to the board! The following books helped me a lot (might as well for some members here):

 

1). Children with starving brain - by Dr. McCandless

Per our DAN doctor, TIC falls into autism spectrum disorder although the book doesn't mention tic. You may get the book from Amazon :

http://www.amazon.com/exec/obidos/tg/detai...072659?v=glance

 

2). Is this your child - by Dr. Rapp

Amazon link:

http://www.amazon.com/exec/obidos/ASIN/068...0830247-6072659

 

 

Also, you may want to use "Add Reply" button to post your message. This way, only your message will be posted.

 

Hope this helps!

 

Jean

[susanna]

crabbywun

Where in PA do you live? I too live in PA nad have found an alternative doctor who has been helping me, with success.

[KJS]

Crabbywun,

The website I went to before beginning the Feingold diet is www.feingold.org. There is a lot of information there. If you join the organization ($80) you get the food list shopping guide plus a spiral-bound book that leads you through the program.

 

Good luck.

Karen