Dr appt tomorrow, Major Stress, and ordering Bonnie's Vitamins

[mom2three]

Hi. My daughter is 11 and was diagnosed with PANDAS at the age of five. The way they "discovered" PANDAS was studying Syndenham's Chorea, which is very similiar to PANDAS, but instead of just tics, there are more exagerated movements, possibly what you are describing with your daughter. The thing with Syndenhanm's Chorea is that is can show up months after a strep exposure and the blood titers for strep would be negative at that time. The behavioral issues are the same as PANDAS also. Just thought I would mention this in case you have not explored that possibility. Godd luck with everything. I know how stressful it is. Here is one link with more info.

http://www.wemove.org/syd/

 

Colleen

 

 

From what I read she doesn't have all those symptoms?

but who really knows what it is.

I wish someone could tell me.

 

I know there is a fix somewhere

[mom2three]

So totally ironically..

the doctors office called me a few minutes ago to tell me the results of my daughters bloodwork.

 

Everything showed in normal ranges.

 

So back to square one.

 

However, all the vitamin levels they tested also showed within the normal ranges, not high even though she takes so many vitamins.. So does that mean I am on the right track with her lacking these vitamins? If she wasn't lacking them wouldn't it all show up as high?

 

The only thing that was slightly elevated was potassium but it was still within normal range.

 

Ahhh

[michele]

Sorry you know nothing more now then before. We have been there and done that many times with different Dr's. Ijust got the same news Mon. from a new immunologist. The only Dr. who ran and knew how to interpret the tests and had a plan of action was the DAN Dr. Some people here have had luck with traditional Dr's helping their children but I haven't yet. We keep searching for one locally who knows and has dealt with PANDAS but only have found Dr. Murphy and she is states away. I may just email her directly like others here have done. She can't write prescriptions in a different state though.

 

Michele

 

 

So totally ironically..

the doctors office called me a few minutes ago to tell me the results of my daughters bloodwork.

 

Everything showed in normal ranges.

 

So back to square one.

 

However, all the vitamin levels they tested also showed within the normal ranges, not high even though she takes so many vitamins.. So does that mean I am on the right track with her lacking these vitamins? If she wasn't lacking them wouldn't it all show up as high?

 

The only thing that was slightly elevated was potassium but it was still within normal range.

 

Ahhh

[CarolynN]

Mom2three,

 

Can I just recommend one thing that could be a real possibility for your daughter and that is MSG reaction. MSG causes MAJOR reactions in many people. Some people get horrible migraines, some people get diarrhea, some people have severe pain in other parts of their bodies, and some people like my son get very strong tics from eating it. His tics last for over a week once he ingests just a little bit (I really mean just a few bites).

 

Unfortantely, most doctors have no clue about this being such a problem for people. I have read, on MSG websites, about some people with SEVERE fibromyalgia and they are in horrible pain. They give up eating MSG and guess what all the symptoms go away. I have read more then one place that fibromyalgia is probably directly linked in with MSG/Aspartame as to being the root of the issue.

 

I literally read every label like my son's life depends on it. I have to research which restaurants we can go to. We are going to Disneyland, in a few weeks, and I had to call up the head chef and ask all kinds of questions. You know what is amazing, in my conversation with him, he did not realize all the different names MSG is hidden under. It is Disneyland's policy not to add MSG to food but he did not know it came under different names. Another example, I was at "Sweet Tomatoes Restaurant" and I asked if they used MSG in their soups. I was told absolutely not. Well I asked to read the ingredients and there it is under "autolyzed yeast extract". I would say when you go to restaurants you have to read every label because the people working at these places just plain don't realize it is hidden under various names.

 

Mom2three, I cannot even begin to stress the impact MSG has on my son. It very well could be your daughter is getting MSG in sources you have no idea. For example, I gave my son a whipped topping one time and he reacted. It had something called Sodium Caseinate (spelled correctly?) and it is MSG. Parmesan cheese and soy sauce are both very naturally high in MSG. What occurs is as this products age in manufacturing process something called "free glutamate" in the food occurs. These "free glutamates" get absorbed VERY quickly into our bodies and extremely quick into the nervous system. I have seen it referenced on the internet as "Free Glutamate Intolerance".

 

Both MSG and aspartame have "free glutamates" Russell L. Blaylock wrote a book called "Excitotoxins the taste that kills". MSG and aspartame is very scary stuff one way or another!

 

Also I was reading in another book by Dr. William Walsh "The Food Allergy Book", that he would work with his patients to get them all sorted out regarding allergies and they would still have severe reactions to certain foods. He could not figure out what was going on with them, because he was trained that MSG was safe to take in, and then one man who had a very severe reaction to a sausage changed his whole perspective. Dr. Walsh read the ingredients and realized the only possibility was indeed the MSG. That man gave up eating MSG and his severe cluster migraines went away. He then told his other patients to avoid it and guess what the headaches and other aliments started disappearing.

 

As big of a problem that MSG is, to so many, I think you would be doing your daughter a great service by learning all the different names of MSG. I created a post a while back where I discuss a lot of the different names http://www.latitudes.org/forums/index.php?...aded&start= . Also keeping a food log may help you see a bigger picture.

 

I remember when I first read that MSG was one of the main tic triggers it did not really come to my mind as a possibility for Daniel. It was then from one of Chemar's posts and by me doing a food log that all of a sudden, it was like fireworks going off, I knew it was my answer. All the days he had BIG increases in tics he had had MSG!

 

Like I said it takes my son a good week to get MSG out of his system and to calm back down. So lets assume your daughter is eating MSG and/or aspartame every day or even every other, because it is in so many products and most people in America do, then your daughter's body is never getting a chance to recover.

 

I would say Daniel's next biggest problem is Yellow Dye #5 and #6, caramel colors and red dye 40. So avoid these too.

 

Just try for say three weeks to get every bit of MSG /aspartame out of her diet, including school lunches, and just see where she is at. You may be surprised to find out she is doing much better. I don't mean to overstate something but I have done enough reading about MSG and aspartame to know it really can be a massive problem for someone who has a sensitive nervous system. It just is about the worst thing you could consume.

 

I hope MSG/Aspartame is your answer. It has taken A LOT of work to get this out of his diet but I had not choice and it has been such a massive payoff for our family.

 

You should spend just even an hour on the internet looking up reactions that people have to MSG/Aspartame and I think you will be shocked at what you will find.

 

I am also trying to understand ways to help Daniel to help him tolerate some MSG, since it is in so many of our foods, and this is one of my goals is to find an answer to help him. I really do believe, as I have posted on another link, that the sulfation system of the body is my answer in getting to the root of this issue. I will certainly pass on any information I find on this forum that I think would help.

 

It really can be horrible thing for so many people. This food additive and also the aspartame is literally ruining many peoples lives unknowingly. It just makes me SOOOOOOOOOO MAD that the government does not require foods to be labeled clearly that they contain MSG. As a matter of fact, there is a website called Truth in Labeling, and they list foods that even claim to be MSG free but if you read the label there it is hidden under another name. It is truly frustrating problem but I really feel I am getting a handle on what to look for and what foods Daniel can safely eat!

 

One last thing, even if your daughter did not show an "allergy" to this, if you had her tested, you have to realize like my Naturopathic Doctor told me, it is not an allergy but a toxin. So it would not necessarily show on an allergy type of test.

 

Have a blessed day!

 

Carolyn N.

[Chemar]

Carolyn

thank you so much for the detail you have provided here

 

I cannot stress often enough just what a severe impact MSG (in all its forms) and aspartame(nutrasweet) have on my son's overall health, but especially on his tics and OCD

[CarolynN]

Mom2three,

 

I have been thinking about your daughter today and what I have learned regarding the sulfation system of the body. This is what I have been posting about, for the past week or so, and how I think this is the key to my son's issues. But the one thing that kept going through my mind today is this sulfation system also has to process hormones. So I was thinking if your daughters sulfation system is overloaded and cannot keep up with the hormones, because it is already overtaxed, then it would make complete sense she would have problems (since she is right at the age of puberty). So then you add to the fact that this system also is responsible for handling toxins in the foods, neurotransmitters, and environmental factor and all of a sudden you have one very overworked system. When this system gets overloaded it cannot process the excess neurotransmitters like it should. So what happens is you get an increase in dopamine. This dopamine is ultimately what causes the problem in the brain with tourettes/tics. So then you add MSG or aspartame into the situation and now you have just one boiling pot of problems for the sulfation system.

 

I keep posting this link on various posts, so you may have already read it, but it is VERY informative. It is very complicated but hang in there and just keep going over it. I think you will learn some really interesting things. http://www.newtreatments.org/fromweb/sulfur.html .

 

The good news is there are things you can do to help the sulfation system. The first is avoiding those things that tear it down like chemical foods, tylenol, chlorine, and salicylates (if you are very sensitive). Also epsom salts baths (2 cups espsom salts in bath), use something called the "Showerwise" to help filter chlorine out of tub water, using enzymes to help process foods, the Feingold Diet is designed for this problem so you can check into this, magnesium taurate helps support the sulfation system, using enzymes, and there are other supplements I am still researching. So it is by far not hopeless. It is just understanding it and jumping in with both feet and getting going in the right direction. If you read the article I stated you will see other suggestions that the author gives in supporting the sulfation system of the body.

 

I have told a few other people on this forum about a book I am reading called "Enzymes for Autism and other Neurological Conditions" by Karen DeFelice. I seriously cannot say enough about it. She explains so well the sulfation system of the body and also how foods, toxins, etc effect it. Also she explains how she used enzymes to turn her son's lives around. I am going to study this book like crazy because I think she knows exactly what to do and I want to copy someone who has had great success in helping their children with an neurological condition. I think it would be great for you to obtain. I got mine through Amazon I think. It was a used copy and it was fairly inexpensive maybe $10 or so.

 

The last thing I wanted to add, I forgot to put this on my last post, that I can give Daniel all the vitamins that I know to help him (he is on Bonnie's vitamins) but they still do not offer protection against MSG. I know I saw your posting that Bonnie's vitamins seem to not be working but it simply could be because her diet has not changed enough to make the ultimate difference. I am on a mission, as I have already posted, to help get the sulfation system running better in Daniel so he can tolerate more foods.

 

So hang in there. You will get to the bottom of this and soon it will be a thing of the past!

 

Have a great day!

 

Carolyn N.

 

P.S. Thanks Chemar for the encouragement. I really believe with all my heart that anyone who has tics should avoid MSG and aspartame like the plague. There is absolutely no way they add any value to the situation they can only be a massive detriment. I just really want to get the word out there to the truth of these very destructive toxins.

[kim]

Mom2three,

 

I think I posted this already somewhere, but in addition to all of the information that Carolyn N. is providing you with, I wanted to mention again that the Rescue Remedy that seemed to correlate with the worsening of your daughters symptons has a least on ingredient that is a polyphenol (i only looked at two of them). As Carolyn just posted, puberty, virus or infection, + high phenol could have come together to contribute to the problem. You might want to help your daughter avoid phenol/lsalicylates for a couple of weeks and see if it helps.

 

I think there are many of us here, that have thoughts and prayers going out to you and your daughter. It's always hard to think about a child going through something painful, that noone seems to be able to help with.

[mom2three]

How do I find out what phenol/lsalicylates is in as well as all the names for MSG.

and is it all the same kind of MSG under different names or just similar?

 

thanks

 

Mom2three,

 

I think I posted this already somewhere, but in addition to all of the information that Carolyn N. is providing you with, I wanted to mention again that the Rescue Remedy that seemed to correlate with the worsening of your daughters symptons has a least on ingredient that is a polyphenol (i only looked at two of them). As Carolyn just posted, puberty, virus or infection, + high phenol could have come together to contribute to the problem. You might want to help your daughter avoid phenol/lsalicylates for a couple of weeks and see if it helps.

 

I think there are many of us here, that have thoughts and prayers going out to you and your daughter. It's always hard to think about a child going through something painful, that noone seems to be able to help with.

[Chemar]

How do I find out what phenol/lsalicylates is in as well as all the names for MSG.

and is it all the same kind of MSG under different names or just similar?

 

thanks

 

Carolyn has linked an earlier thread she started on hidden names for MSG and other good info

http://www.latitudes.org/forums/index.php?showtopic=2598

 

the Feingold Diet has lists of foods hish in salicylates I believe. Maybe one of those more familiar with the Feingold plan will have more info for you on that

[CarolynN]

Mom2Three,

 

I just wanted to share, just in case you did not see, that I created a list of foods I feed my son Daniel. I thought this would help you figure out where to start in helping your daughter with dietary changes. You may find out that she has an allergy to say dairy or wheat but this list is a list of foods that contain no MSG, High Fructose Corn Syrup (they may have regular corn syrup but few of them do), or Artificial Dyes. It does not take salicylates into consideration. Here is the link http://www.latitudes.org/forums/index.php?...amp;#entry20053 .

 

I know how overwhelming it is to try to figure out this great big puzzle. But I do believe keeping the MSG, High Fructose Corn Syrup, or Artificial Dyes out of the diet is one way or another a necessity when dealing with an neurological situation such as tics/tourettes. If it were me, I would start with eliminating these "big guns". See how your daughter is doing in a month or so and then you may need to see if she is also reacting to salicylates. By then you will have a good idea if these other items are the main problem. Here is a list of common foods with salicylates just in case you want to go over these too http://www.zipworld.com.au/~ataraxy/Salicylates_list.html .

 

Take a deep breath and know you cannot do all this over night. It takes time to learn what foods can be tolerated and I also had to learn to cook for my family. In the past we did A LOT of processed foods (primarily that was our diet) so this was a huge change for me.

 

I would HIGHLY recommend a food log for your daughter. Keep track of what she is eating and how she seems to be in the morning and at night. I have a system of a 1 to 10. 1 being very low tics and 10 being very high. Every day morning and night I make a quick note of the foods he has eating and where he is from a 1 to a 10.

 

God Bless,

 

Carolyn N.

[CarolynN]

Sorry I double posted the last post somehow. So I just deleted it.

[mom2three]

Thank you for all the links and information.

I am going to have to take it slow regarding all this since its so overwhelming.

 

I know this weekend she had a "diet" drink. One of her friends moms had some of those crystal light flavored packs that are small that you can dump right into the water bottles. Well she didn't know about any of this and let my daughter have a rasperry one to dump into her water bottle.

I found this out later.

 

It was full of that aspartemne (sorry for the misspelling)

 

Well all night she was Flying.. Extra tics.. Way to much energy, hard to reason with, etc..

So I really do see what you are all saying about this stuff.

 

I am going to try and pull the MSG stuff and see what happens. I never really thought about it before or realized how sneaky it is in our foods with different names.

 

I'll have to plan out some menus first though and make sure I have enough non msg things in the house.