Posts posted by Sheila
Will do! Sheila
Jessica, welcome, and thank you for posting on our forum. There is a documented link between immune function/allergy and tics though conventional physicians don't usually emphasize this or aren't aware of it. At a recent national Tourette Syndrome Association meeting a TS researcher said during a lecture that while they have not yet located a gene for TS, they are now looking at immune function--something they "would not have considered ten years ago."
Reports of hypersensitivities to allergens (including insect bites), foods, and toxic chemicals is common and we frequently receive these reports, with exposures resulting in increased TS symptoms. Reducing the allergic response through nutrients, diet, environmental changes, and detoxification when called for can make a huge difference.
Best wishes, Sheila
Bonnie, that's terrific news. Congratulations! It's been a long time coming and well deserved. Please keep us posted. We continue to tell people about you and your efforts.
Best wishes, Sheila
IHerbert, please excuse the delay in getting back to you. I have sent you an email so we can talk about your experience. I have been reading your others posts. Best wishes, Sheila (561.798/9060)
Jennifer, thank you for your post. All the information you shared is very helpful. It makes such a difference when you can see a true cause and effect. Without that, the progression of tics can be so confusing and apparently senseless. I'm going to share your material in one of our publications. I hope you can continue to learn more about your son's triggers. He's lucky to have such an observant and open-minded mom! Sheila
Jennifer, sorry for the delay. I was out of town.
I understand your question and if you will write to me at Sheila@Latitudes.org and put "prenatal" in the subject line, I will try to get some information to you. (Will have a couple of questions to ask first, which I will do in the email.)
We can then share generic recommendations later on the site.
Hope you are feeling OK so far! Sheila
Gina and Ben,
The ACAM site (American College for Advancement in Medicine) has a listing of the abbreviations and meanings at the bottom of the doc listing page.
These doctors tend to be cutting ede, knowledeable in nutrition and wellness issues, detox etc. As in any group, there is a range of expertise among them and different approaches taken.
The AAEM (Am. Academy of Environmental Medicine) group has more emphasis on allergy diagnosis and treatment, and should also be familiar with nutrition and wellness issues and detox. The AAEM group uses the techniques described by Doris Rapp, MD and the enviromental medicine approach has helped many kids (not all) with TS. But some families have also found help through only dietary measures, nutrients, and detox with other doctors which is why we list both groups.
Because it has lesss members, it is sometimes difficult to find an AAEM doctor near you, though an experienced good one can be worth traveling to, depending on the situation.
Hope that helps. Sheila
Mattie, your post caught my eye because written language disabilities can be some of the most difficult to deal with in school.
Since you say he is bright, tell his parent to ask the school to evaluate him. If he is determined to have a significant difference between his IQ and his writing skills, he may qualify for special accomodations.
There are two main concerns with written language problems. One is that, as you have found, the student avoids work--or does persist but receives discouraging grades because of poor penmenship and/or poor language skills. (And when their work is sloppy and you ask them to do it over--forget it!!) Then, because they don't like to write, they miss an important part of learning that takes place when with notetaking.
For the bright kids, this is so detrimental, and self esteem is greatly affected. Yet they can respond well verbally in class and do fine on reading assignments.
The accomodations that can be made are thing such as allowing computer use, avoiding unnecessary writing, more time for writing assignments, etc. The voice-activated computer programs will save the day for him if he can just make it to college! Sometimes they get so discouraged they give up before then.
An evaluation is worth pursuing. The parent can check with the school psychologist if not getting anywhere with regular school staff. And they should request a thorough written language assessment--not just a spelling test, which is more standard. Hope that helps. Sheila
Bailey--how is the Clonidine working for your son?
Re: your questions, Dr. Robbins is an osteopathic physician (Doctor of Osteopathy). The MSPH is for Masters in Public Health.
DOs in the States take the same medical boards as MDs. Originally there were more holistically oriented (many still are) but many others can't be distinguished from MDs in the way they practice. The criteria is a bit different in the UK. Preventive medicine is just what it sounds like--promoting wellness to avoid illness. And environmental medicine is a type of medical approach where MDs and DOs focus on finding causes for illness rather than just treating symptoms, and they use therapy beyond drugs.
It's good that you have kept him off caffeine and reduced sugars but since you haven't seen much change, you could consider other interventions. Am sure by reading some of these posts you have some ideas. A professional specializing in complementary therapies can also help.
Many parents contacted us that their kid's TS got much worse around the holidays and they didn't think it was excitement as much as the junk they were eating. Did you find that? (But you are right, excitement can be a big trigger, as you say, and you don't want to can't take away fun activities!)
Susan--I saw your reply was in the guest set for Dr. Robbins--he must have overlooked it before we closed and archived the set so we moved it here.
You may know that bacopa is an Ayurvedic herb from India. It is supposed to have antioxidant qualities and calm the nerves, possibly improving attention as well. But there is little research on it. There are also, from what I have read, no reported side-effects--but that could be in part because it is not carefully monitored and not widely used in the West.
I would ask the natural food store to show you information on it if they are recommending it. Since there is such little research, it is impossible to say how it might interact with the nutrients you mention.
If you haven't given up on looking for a response to this, please let us know what you decided to do--and if you have learned any more yourself. Sheila
Hi--sorry none of us got back to you on this earlier. Usually alternatives, especially ones without research to back them up-- such as NAET--don't stand up in court against mainstream medicine.
Those who have tried it know how difficult it is to pursue natural approaches versus taking standard medications, and your ex-wife has, for whatever reasons, chosen this road. Your son needs to know that you will support him no matter how this ends up. I can imagine your frustration, given the family history and your success with alternatives, but hopefully you can shield your son from this frustration.
Hopefully as he gets older he will remember the positive experiences he had with non-drug treatment and pursue it once again if he still needs it. And we also hope that if he did end up on medications, that they were helpful for him. We wish you all the best. Sheila
Kim, When I read your letter I thought of a child I know who had many of the symptoms you mentioned including tics, OCD, touching hot things and screaming --not the physical flips as far as I know though (that must be rough).
Not that many kids do the touching of hot things, which must be so distressing for you, and have always remembered that case.
His OCD, TS, touching hot things, and screaming were brought under control with environmental medicine and nutrient therapy. (You can read some about envir. med. under Dr. Robbins guest section).
All of Jan's suggestions are excellent.
You need to find a professional to help you. You might want to let forum readers know where you live to see if they have someone to recommend.
Don't despair. There should be something that can be done to improve the situation--it's never possible to make promises, but there is always hope.
(Jan--hope you will let us know how the lab tests came out?) Sheila
Debbie had some good ideas--and yes, all those conditions can be related to a systemic yeast condition. It may be just part of the total picture, but definitely worth exploring.
It would be worth your while to get one of Dr. William Crook's books on the "Yeast Connection." They are easy to find--just call around to stores. They contain many helpful recommendations too numerous to summarize. Diet is a big factor.
The nystatin mentioned requires a prescription, and there are other Rx options if indeed that type of treatment is required, so would consider going to a doctor who handles this.
Would also take probiotics every day--a natural food store will carry them. Go for top quality, not low price. Are you familiar with what they are? Sheila
Gina--you can send me an email (I don't have your address) about the name of a doctor. Sheila@Latitudes.org
Am not suggesting your son be off milk longterm, just long enough for you to see if it makes a difference--a few weeks maybe.
The doctor you go to will be able to give nutritional recommendations. In the meantime you could go to www.kirkmanlabs.com and search "calcium" if you do end up taking him off long term. They make hypoallergenic products--so you don't have to worry about reactions to additives in the their nutrients with that label. There are of course other foods that also have calcium, but you are correct that you should consider this when taking him off dairy as that is usually the main source.
I would not get any tests until you have someone overseeing the selection of lab work. Sometimes doctors will work together in case one is on your insurance and another is not, if they can both agree on the tests to order.
Will watch for your email. Sheila
Gina--You can look at www.aaem.com or www.acam.org for referrals for doctors who may be able to help you.
In the meantime, in addition to the dietary changes you have made, try taking him totally off milk and all artificial colors. And get rid of all scented products in the home. Have you had a chance to read Dr. Robbins guest responses? Where do you live?
Paula, There's a book by Jonathan Wright, MD: Why Stomach Acid is Good for You. He recommends HCl for several conditions when people have lower than normal gastric acid secretion. The book has suggestions for administration and monitoring (says its use should be closely monitored by a knowledgeable physician) as well as on other issues. Dr. Wright indicates HCl should not be taken with anti-inflammatory medication.
Is the protocol helping so far?
Best wishes, Sheila
To Day by Day, Sorry that I just saw your message! A chart where students lose privileges can be a great concept. Some people think it is more realistic than having kids expect rewards for acceptable behavior. In this type of chart, you determine events that can be treated as privileges each day, and the child loses the privilege if they make poor choices in their behavior.
As in other charts, for the best success you have to focus on one or two clear behaviors (not something vague like "Be good.") Let's say at school the parents and teacher decide to focus on Mary not speaking out without raising her hand. There could be a daily grid with 8 - 12 squares. The teacher talks with the parent, often along with the child, and discusses the daily routine. What happens after school each day that the child enjoys? Possibilities are watching TV, skateboarding, a special snack, playing outside with a friend, riding a bike, playing a video game, staying up late, etc.
Now turn to the chart. What you are going to do is allow the child a few mistakes if they have been having frequent trouble in an area. So you might leave the first 4 squares blank. Then start by filling in these privileges in order, one per square. You can start with some of the least important to the child and finish up with the most important. (Another good one to consider using is figuring out a daily amount for the weekly allowance. That is also a privilege the child can lose.) Depending on the size of the chart you will have 4-8 priviliges written or drawn in picture form. Once the chart is done, make copies from that.
Each day the teacher tapes the chart on Mary's desk or keeps it somewhere else in the room. When Mary inappropriately calls out an "x" is quietly placed in the first box. She has a few more chances for error in those blank squares, then she will be causing an X to mark out something she enjoys. This continues through the day. She loses every privilege with an X on it. So, at the end of the day shes may have lost the privilege of playing with her neighbor, watching TV, and has to go to bed half an hour earlier than usual--for that day only.
When the chart comes home, the parent knows clearly what the consequences are for that day. If Mary forgets to take her chart home, she loses all the privileges for that day. (She will get through it and remember it next time!) Each day is a fresh start.
The benefit for parents is that it makes it very clear what the consequences should be--there is no discussion. And similarly for teachers, there is no need for discussion or arguing about it. Most children respond well to this and manage to stop themselves as they reach a privilege they really don't want to lose.
The key is to find the suitable rewards, but also to make sure the request is reasonable. If Mary is truly verbally hyperactive and has been loudly and impulsively calling out many times a day, the agreement could at first be that she whispers to a friend rather than speak loudly and privileges would only be lost for loud talking. The point is that you want to be sure it will work and that it is not unrealisitic.
Also, it goes without saying that the privileges are just that--they are not needs. Things like meals, lunch money, hugs, etc. would never be withheld. It is not intended to be abusive in anyway, just to make the child more aware of their behavior and help them develop self-control.
There will be an occasional child for which this will not work, and some parents may object to the concept of taking something away from a child rather than rewarding. But, many parents and teachers find it makes a lot of sense. Also, you have to be sure the event is something that can be monitored by the parent. If the child gets home first and there is no one to make sure the TV is not on, you might have to target evening TV shows.
Hope this made sense! Good luck. Sheila
Tanya, thanks for the note on the behavior charts. Am glad they have been of help. We plan to have new ones everytime we send out our e-newsletter (ACN Today) which is every couple of months. We try to fulfill requests for special types of charts, so if there is something in particular that you need, let us know and we will do our best to have it for you. Sheila
Hi! Thanks very much for taking part in our new forum. We are just getting it started--please spread the word on it!
I hope those of you dealing with TS will take a minute to complete our anonymous survey on triggers for tics. Please click on the following link to access the survey: Triggers Survey.
It really does just take two minutes, and your responses will help many others. We will be sharing the results in January on the site and in our publications.
Jim--please watch for an email from me. Sheila
Association for Comprehensive NeuroTherapy (ACN) is pleased to present the opening of our new forums. We hope you will benefit from our guest speakers and comments from other participants.
Please visit our website www.Latitudes.org to learn more about our organization. We focus on advanced, alternative, and complementary approaches to neurological conditions.
You can sign up for our free e-newsletter on our website and will also find information about our magazine, Latitudes.
We hope you will help us spread the word about these new forums. Your suggestions are invited--and your participation is greatly appreciated!
David, I would agree with smilemona. As a school psychologist for many years, I saw that 504 plans were rarely initiated by school staff. Usually it was the parent who requested it rather than the school offering it.
For readers who aren't familiar with them, 504 plans allow for special accomodations in the classroom. For a child with an attention problem these could range from sitting near the teacher to having more time on tests. A set of options is usually available at the school. But a team, of which the parents should be part, usually decides on whether a 504 is warranted, and then what the accomodations should be.
If you really think your child should have one and you aren't getting results, you should try to locate a parent advocate in your area to help you or ask to speak with your school psychologist.
Prevacid induced tics
in Tourette Syndrome and Tics
So sorry to hear that. I hope you have been able to bring the symptoms somewhat under control?
I will put your question in Latitudes and see if anyone replies. Best wishes, Sheila