Jump to content
ACN Latitudes Forums

New Member Needs Suggestions


Dara

Recommended Posts

Hi Helen, There are ways to keep her diet clean without taking away her desserts! It sounds like you saw some results when you kept her diet clean, so you should stick with it. There are many foods out there that don't have the artificial colors / flavors / preservatives. I wouldn't worry too much about sugar. In most cases, sugar is not the problem - only the artificial additives. If she likes ice cream, get her some Breyer's Vanilla, or any of the Breyer's flavors in the Black and White boxes. Make her some chocoloate chip cookies, using Ghirardelli choc chips and all-natural Vanilla (not Imitation Vanilla flavor stuff). You'll pay more for it, but she'll be able to eat dessert. There are other ice creams, organic cake mixes, etc. that you can use. She doesn't have to suffer. I strongly suggest that you check out Feingold.org, and perhaps become a member. With membership, you have access to the Food Guide, published annually, that lists thousands of specific products that have been researched by the organization and found to be free of artificial colors, flavors, and the preservatives BHA, BHT, and TBHQ.

As for Halloween, what we do is allow them to keep 15-20 pieces, but none of the really colorful stuff, like Twizzlers, Skittles, etc. You can also buy her some all-natural candies, including candy canes. Check out Squirrel's-nest.com

My wife just told me last night of two more families that have been helped by eliminating artificials. A conversation while in the waiting room of the dance studio has changed their lives. One daughter has gone from being a terror with lack of focus, to one whose teacher is asking "What have you done for her? Her focus and behavior have done a complete turn-around" The other has gone from a problem bed-wetter, even gone to "therapy" for it... to only one accident in the last month. In both cases, it was due to eliminating the colors and flavors from their diet.

Helen, we can go "off-diet" once in a while, as long as we keep clean most of the time. It will depend on the individual's sensitivity.

Also, if you do try a children's multi-vitamin, don't buy a brand that has the colors and flavors. Shop for an all-natural. Try Freeda brand on-line.

Good luck. Jeff

Link to comment
Share on other sites

Hi Helen,

 

Welcome to this forum. As you can see from my previous notes, I'm new here too. I found this website November 1st and have been trying to learn and correspond with all the other users since then. It's been a lifesaver for me. Our son Karl started with the eye blinking last november. In April of this year it went to a full force facial tic - eye rolling, grimacing, pulling down the mouth, etc. In addition, he also was coughing, clearing his throat and making this horrible throaty sound. We also thought Karl's tics in April corresponded with the allergy season.

 

Since that time we've seen numerous doctors - all different types. After much research and determination, I think we finally found the right one - Dr. Majid Ali, in Denville, New Jersey. He's an environmental physician who treats tic disorders through nutrition, supplements and allergy identification. I'd be happy to give you all the information on him and tell you in detail what he ordered and what he prescribed for my son in the areas of diet and supplements. You said that you're in NY. Is that NYC or NY state. I'm from Poughkeepsie, New York originally but now live in New Jersey with my husband Karl and my two sons Karl Henry (4 1/2) and Graham (3).

 

All I can say is that it's been some roller coaster ride since April. We've had good days and really bad days. I'm hopeful that we're doing the right thing for our son and that it's only a matter of time before we start to see improvements.

 

I know the agony and emotions you're going through. I've been going through it everyday and I feel for you. One minute I'm staring at my son crying, because I feel so sorry for him and the other moment I'm laughing, playing with him thinking that everything will be fine. We all have to stick together and try to figure out the best way to help our children through knowledge and corresponding with others in the same situation.

 

Let me know if you'd like to chat further in detail and we can exchange email addresses.

 

Take Care.

 

Dara.

Link to comment
Share on other sites

Hi Dara and Helen,

 

Helen, your daughter's history of tics are almost identical to my son's. The vitamins that I give my son are all in a shake so they don't appear to be that many to him.

 

The tests I did were:

- IgG blood test - revealed over 30 sensitivites (not even including the salicylates)

- Gliaden/Gluten Antibody Assay (IgG ELISA test, IgA ELISA test) - showed that he was very gluten sensitive

- tTG-IGA Tissue Transglutaminase Assay - to check if my son had celiac. Thank God - did not.

- Fatty Acids - Erythrocytes blood test - to see exactly what the fatty acids situation was.

- a urine test (don't remember the name) checked for vitamin C, stress hormone, malabsorption, zinc, glucose, etc).

 

All this was done with 1 blood taking and they filled 2 little bottles. Plus a urine sample. It wasn't too traumatic for my son, since I gave him a reward for being a good patient.

 

Dara, how did your tests go?

 

Dara, you also asked what exactly I put in my "vitamin shake". Here are the details (note that my son will be 6 years old at the end of December.)

 

I give him a shake in the morning and in the afternoon around 4:00 PM.

 

Multivitamins/Minerals

-------------------------

To help deal with the food sensitivities:

Ultracare for kids (Metagenics - multivitamin/minerals/protein/DHA- powder) - 1/2 scoop in AM and PM

(smells like cherry/banana - I haven't tasted it ;-)

 

To help rebuild the lining of the intestines:

Ultraclear G.I. (multi-vitamin/Mineral - powder) - 1/2 scoop in AM and PM

(smells like vanilla )

 

Essential fatty acids

-----------------------

(these 2 items are the only ones that don't go in the shake)

 

- Children's DHA - Nordic Naturals - 1 gel capsule in AM and PM

(tastes like strawberry) My son just gagged when I had earlier tried cod liver oil - this is the only thing that he will accept. He chews the capsule and swallows it.

 

- META EPO (Metagentics) - Pure Evening Primrose Oil - 1 gel capsule in the AM

(my son squeezed the oil in his mouth and then spits out the gel capsule.

 

Extra vitamin C

------------------

Rose Hips (Scientific Botanicals Co., Inc) - liquid - 1/4 tsp in AM and PM

(looks like molasses)

 

Friendly Bacteria

---------------------

- Saccharomyces Boulardii (Jarrow Formulas) - 1 capsule opened in shake in AM

- Ultra Bifidus DF / Bifidobacterium lactis (Metagenics) - 1/4 tsp in AM and PM

- Ultra Flora Plus DF (Metagenics) (contains Bifidobacteria & NCFM Acidophilus with Probio-Saccharide factor) 1/4 tsp in AM and PM

(all powdered form - stored in the refrigerator) disolved in the shake.

 

Extra Magnesium

--------------------

Magnesium Plus (Ecotrend)

I disolve 1 envelope in 2 litres of water and store in the fridge. I use 1/4 of litre in his shake. AM and PM.

 

Extra Zinc

-----------

Zinc Tally (Metagenics) -liquid - 1 tsp in AM and PM

(It is easy to figure out if your child is deficient in zinc by having them taste a teaspoon in the morning of liquid zinc. If it tastes like metal, then they have enough zinc, if it tastes like water, then they are defficient.

I don't give zinc to my son anymore because it now tastes like metal to him - it tasted like water before.

 

 

My son has been taking the shake for a couple of months now. He likes the taste... I have to admit that he is getting tired of it though. It won't be forever I am told, the goal is to eliminate the foods so that the body can stop reacting and also provide the proper vitamins/minerals/friendly bacteria/etc to restore the intestines and the body to good health again. Once the leaky gut is healed, it should function well enough to absorb the nutrients from the food he eats....with less supplements.

 

Like Jeff mentioned, I make almost all his snacks,cookies,muffins. But I did buy icecream that had no additives. I also bought sheberts. I joined Feingold. There is not shortage of treats. I also allow him to have regular birthday cake at a party (95%/5% rule)

 

I try to prepare fish (mostly salmon, sardines, mackerel) about 2 to 3 times a week. Along with 1 lentil soup per week - it is good for restoring the intestines.

 

I would say the biggest benefits were seen when I eliminated the salicylates, and when we introduced the zinc and magnesium. Otherwise the improvements have been gradual and now I would say he is about 90 % better. Calmer, friendlier and less tics.

 

Read Claire's thread for newcomers. That is an excellent summary that really helped me get a handle on this.

http://www.latitudes.org/forums/index.php?...p?showtopic=689

 

Hope this helps. It is hard for us parents to see our children tic - we love our children so much. I still feel sad inside and hope and pray that, in time, it will not be an issue for us. You are both on the right track, keep chugging along, there are difficult times and then there are very rewarding times when you see things improving. Don't get discouraged during the valleys. In the valleys, you just have to think that you are discovering something important that is triggering the tics and needs to be figured out. Give them lots of hugs and love, and stay focused on the mystery to solve at hand. You will find your answers.

 

Take care and give them an extra kiss and hug from me.

Evangelia

ps. I am curious as to what other vitamin combos other parents are giving their children.

Link to comment
Share on other sites

Hi Evangelia,

 

I just signed on quickly. It's almost 11am Thursday night and I'm so tired. I wish I had the time/strengh to sign on and chat every night. We did get some test results back from our doctor and I would like to tell you what vitamins and supplements our son is on, unfortunately I need to go to bed, so I'll write you over the weekend. Thanks for keeping in touch with me. Are you in NJ????

 

Dara

Link to comment
Share on other sites

Hi Jeff, Dara & Evangelia,

 

I'm still not too familiar with this web site, that's why I have just noticed of your reply! Thanks to all of your support.

 

I have just posted a question as to where to take IgG test for my daughter. I can't really tell if she's allergic to any particular type of food. I know she's very sensitive to metals so I have told her to forget about getting her ears pierced for now. Ha! I've just scheduled for an EEG test on her today on next Monday. She has complained about headaches a couple of times & we just want to make sure there's nothing major going on.

 

I know TV is a major trigger for her tics, so the last two weeks I have cut down her TV time a lot and her tics have decreased a lot. Her tics came back immediately today when she came home today from school. Well, I let her watch the tape that her little brother was watching. She watched for about 15 minutes and I could see that she started nodding her head and clacking her teeth frequently. When the tape is finished and she started playing with her brother, her tics decreased. What should I do? No more TV from now on? It will be impossible to do that since both my 4 yr-old son loves tv also. And, will that cause a more uncontrollable outburst of tics later on when she's exposed to TV again?

 

Do any of your kids ever complain about their tics? or ask any questions relating to why they can't watch tv? Why do they have to take all those vitamins? or go to see the specialist? I wonder how that's affecting their feelings? Sharon has always been a very sensitive child. The fact that she always pays attention to the grown- ups' conversations worries about me sometime. Just like today, I called for her EEG appt while she was watching the tape. I did not realize that she could hear me talking on the phone. After she finished with the tape, she came to me & ask me who I was talking to on the phone and why? "Why do you mention my name?" Do your kids realize that they are ill? Sharon is only 6 now & is probably still not being questioned by her friends at school as to why she has all these movements. We told her teacher so she's aware of her condition. I'm worried she gets older, she'll be embarrassed of her condition. I've read something before that says as the child grows older, most of the tics should be greatly reduced. Does anyone know if that's true for most cases? I sure hope so.

 

Btw, Dara, I live in NYC. I'll be happy to chat with you further. Here's my e-mail address: helen_ma_lee@yahoo.com

Link to comment
Share on other sites

Hi Helen,

 

Glad to hear that you are already finding triggers to your daughter's tics. Here is some feedback to your questions, based on my experience.

 

Re: TV and tics

Don't worry, eliminating the TV is not forever. As my son's health is improving, ie. eliminating food sensitivities and building up his immune system, he is able to watch more TV without ticcing. I have heard the same from other parents.

Substitute other activities in place of the TV; games, music from children's tapes, painting, puzzles, etc. When I turned off the TV, no one in the whole family watched TV (I also have a 3 1/2 year old boy). It is easier for them when the rule applies to everyone so it doesn't appear as a punishment. It looks more like a new way of being together. My husband and I only watched when they fell asleep at night.

 

re: Children's feelings

My son has also been a VERY sensitive child since birth.

You did good to advise the teachers about her tics, so the teachers are aware and know how to handle her ticcing. I told my son's teachers that if he was ticcing too much, the teacher can perhaps recommed that he "helps" her run an errand so that he can leave the classroom to get it out of his system. But I can tell you that his tics (although were very severe at the beginning) improved very quickly with the change in diet, no TV and supplements - where the teachers have not really noticed any big distraction.

At the beginning of kindergarten, my son had a hard time because he was jumping and some boys told him that they would stop playing with him unless he stopped jumping! He explained to them that he could not control the jumps, just like when you hiccup, and if they didn't want to play with him, he would play with someone else. Although my heart broke, I was very proud of him.

 

I told my son that his tics are just a way the his body is trying to cummunicate with us that it is not happy with something that we are doing, or feeding it. We are now the "Scooby-Doo" mystery gang that will solve this new mystery. We had to gather clues and figure out what it was that his body didn't like. You can tell her that she will be like "Dora the explorer". This analogy really helped him get into a solution oriented mode as opposed to a victim role right from the beginning.

As his tics got better, I made sure he knew that he was a great detective because we are solving the mystery and doing what his body wanted/needed. This analogy also made it alot easier for him to accept the vitamins, TV changes, and diet changes.

 

re:Headaches

My son also had headaches when his tics were at their worse. I think that it is related to the diet. Also note that when you start the supplements, she will get headaches at the beginning. The way my naturopath explained it was that there are 2 stages in the detox. First, the vitamins will help release the toxins from the fat cells - headaches occur because they are released back into circulation. The 2nd phase is when the toxins are then eliminated through urine and stools - headaches will subside. My son doesn't get any headaches anymore - they lasted for about 2 weeks I would say.

 

 

re: Tics reducing with age

When I went to see a neurologist (who wanted me to use drugs), he said that tics in general climax at 10-13 years old.

 

re: IgG testing

Claire wrote: "Please keep in mind re the allergy testing, it is the IgG (delayed reaction) that seems to impact tics most, not the IgE (immediate reaction). Both are blood tests. www.elisaact.com does the IgG test. Easier to me than trial and error elimination--IF you have the insurance/finances to do it. $300, covered by insurance, max $90-$150 out of pocket, and they test for 150 foods. However, I would make sure it included gluten (wheat) and casein (milk), those are very common. "

 

 

---------

Be encouraged that her condition WILL improve before that. It is a matter of figuring out the triggers, sensitivities/allergies and making changes. When her immune system is built up you can re-introduce everything intermittently.

 

Take care and feel free to ask about anything else that you may be concerned about.

Evangelia

Link to comment
Share on other sites

Hi Evangelia,

 

Thanks for spending your time in answering my questions. I really appreciate that. I especially like your "Scooby-Doo" and "Dora the Explorer" approaches to explain to your son about his tics. I can use that to tell my daughter when she begins to question me with all her "why?"

 

What kind of doctor is your son seeing and how long have you been supplementing him with all those things you listed? That looks like a very long list! Are all these recommended by your doctor? Did he say how long your son has to take these for? I'm asking these because it'll be hard to make my daughter take all these stuffs everyday. The only thing she likes is the Flintstone's children multi-vitamin. But even with that, my husband thinks that it could be I'm giving her too much vitamin that her body doesn't need. I'm only giving the vitamin to her every other night right now.

 

By the way, my daughter had a hernia surgery done when she was 7 weeks old. Sometimes I wonder if they might have used too much anesthesia on her that might have contributed to her tics. I had asked her neurologist on this but of course he doesn't think so.

 

I'm taking her for an EEG test next week. Hopefully, she'll be okay.

 

Helen

Link to comment
Share on other sites

Hi Dara

Sorry I've taken so long to get back to you, but I am just catching up after Matt's operation.

 

The closest thing to an Osteopath would be a Chiropractor. Last night while searching through the forum I came across the following link about a Chiropractor that another member has found fantastic results with. I put it into favorites, but unfortunatley can not remember who the link came from. (sorry)

www.dcdoctor.com/dc/tx/atmachropractic_com/p/fs_healthconditions.html

 

Both the osteopath and anaesthectic (see Aussie thread) gave sustained relief.

My conclusion was that both totally relaxed his muscles and subsequently nerve irritation.

I plan to followup with further osteopath treatments this week. The relief was instant, and I would encourage you to try at least a few sessions to see if it helps.

 

Take care

Marna

Link to comment
Share on other sites

Hi Helen,

 

You are very welcome. I am, myself, learning so much from this newsgroup, it is my pleasure to help in any way I can.

 

My son started the supplements in late September this year. I first saw a neurologist who was no help to us at all - he said that I would be back within the year asking for the drugs. I then had to argue with his pediatrician (for over an hour) to try to convince her to sign for even the smallest blood test - so I knew I wasn't going to get anywhere with her either, and besides, both didn't believe in naturally curing/reducing my sons tics.

 

I decided to see a naturopath and I have been with him since. He costs money and the blood tests are expensive and not covered by my insurance. We are a middle class family but it is worth every penny to help my son.

 

I totally didn't feel comfortable giving my son any supplements without testing first. I had no idea how much to give him and what he uniquely needed. The naturopath has helped me with this, and has also been there to answer alot of my questions along with analysing the test results. I would also recommend you get guidance by these professionals but try to get the tests paid by your insurance. Being with the naturopath has given me ease of mind. I am sure your husband will have ease of mind also because you will both know exactly what each supplement is for and why you are giving it.

 

Yes, to answer your question, the supplements were all recommended by my naturopath especially after the IgG test. My son had ALOT of sensitivities and the naturopath said that we are probably dealing with a leaky gut situation. Most of the supplements are given in one drink in the morning and one in the afternoon - and it is kind of sweet in taste. My naturopath said that we would have to eliminate certain foods for about 3-4 months before re-introducing, and other foods that showed up even more sensitive (like eggs) would be at least 6 months before re-introducing them. All the supplements would be given for a few months also and then be reduced. I already stopped the zinc because he has enough of it in his system. The goal is to rebuild/heal his system (at the beginning) and then it is a matter of maintaining his system with less supplements and more with food.

 

Your daughter may need less supplements, she may have less sensitivities. In Claire's case, she only had to eliminate the TV and the tics were gone. In other cases, only by removing the artificial additives has worked, in other cases, it was the salicylates.

 

Regarding the flinstone's vitamins. I believe they have added artificial colouring and flavouring. I would recommend you don't give them to her. You really should try to avoid artificial colouring and flavourings and preservatives. That in itself can make a big difference. You already saw a big change with TV and that is encouraging!

 

Good luck with your journey.

Evangelia

ps. Dara, I live in Quebec, Canada.

Link to comment
Share on other sites

Hi Marina,

 

Wow, I haven't talked to you in awhile. Is Matt your son? I didn't realize he was having an operation or maybe I've forgotten over time. I hope everything went well. Now I know what an osteopath is. I figured it was like a chiropractor but wasn't sure. It's funny how there are different names for different things. I'll take a look at that link and see if I can possibly locate someone in my area (NJ). Keep in touch.

 

Dara

Link to comment
Share on other sites

Hi Evangelia & Helen,

 

Evangelia, I've been meaning to write to you and update you on what's been going on with our son Karl.

 

As I mentioned in previous notes, we had our original meeting with an enironmental doctor four weeks ago. Since then we've been back to see him once to dicuss test results and to review the supplement program and diet. Our doctor preformed the IgE blood test which showed sensitivities to eggs, milk, cane sugar and oranges. Also, molds, yeast and fungus and sycamore & oak trees. The inhalent are beging treated with sublingual drops. As far as the diet is concerned, we've taken all the sensitive items away from him (boy was this hard - he loves eggs and was sometimes eating them twice a day). We've taken all dairy and sugar out also.

 

As for the supplements, the original group of supplements that were ordered were mostly in pill format which I was supposed to grind up and stick in his food/drink. Well this did not work. He refused to eat anything with the supplements. When we went back last Monday to get the test results and do a supplement/diet check, our doctor changed some of the supplements to chewable forms. I've finally been able to get ALL the supplements in him for one week. Yeah. I still have to grind a couple of them up in a coffee grinder and put them in a sip of juice. Karl takes these ground up ones in juice just like someone is doing a shot from a shot glass. He doesn't like it but does it for me.

 

So, after four weeks, we're finally on the diet (95%) and doing all of the supplements. Boy this is some process. My husband and I did agree that we thought Karl's tics were slightly less, just slightly. I'll take anything at this point. I'm so anxious to see some results. We're totally sticking to this program of diet and supplements. I really like our doctor and think he's on the right path when it comes to healing the body through nutrition and supplements. I guess it's just a matter of time. I've also cut down on the amount of TV our sons watch.

 

Helen,

 

In reference to your question about if my son asks/talks about his tics and why he has to diet and take all the supplements - the answer is NO. Keep in mind that he's only 4 1/2. His tics started with eye blinking one year ago (NOv. 2003) and in April of this year when to full facial tics. From that point he's had and/or still has in varying degrees everything from eye blinking, eye rolling, grimacing, sniffing, coughing, head cocking left to right, head cocking in a downward motion and abdominal tics. Even when his tics were at there worst (September he had a terrible abdominal tic which affected his walking) he NEVER complained or mentioned it once. It got so bad during this time, I had to carry him sometimes. We were so heartbroken. To see your children suffering is probably one of the worst things that I've had to endure. I truly believe Karl just thinks this is the way he is. He doesn't mention his tic to us and we don't mention it to him. I try to keep our lives as normal as possible while at the same time implementing the diet and supplements.

 

Well girls, it's 6am and it's time for me to get moving. I wake my boys at 7am for nursery school. I always get up early (usually 6am) to have a little time for myself before I have to wake them up. My husband works in New York City and leaves the house at 5:50am to catch the ferry to work, so I'm pretty much up anyway.

 

I'll write soon.

 

Dara

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...