Is this TS? And what do I do now?

[faith]

could I just ask if he eats alot of fruits?

 

 

Faith

[lurker]

Donna,

 

Research the physiological aspects of hunger. I think the stomach secretes hydrachloric acid when you are hungry or preparing to eat. Maybe it is the acidic empty tummy that sets him off? I'll go throught my PMs and try to figure out who was doing the 3 hour snacks. Maybe she can help.

 

Tami

[gfam]

could I just ask if he eats alot of fruits?

 

 

Faith

 

During the past few weeks he has had a lot of pineapple and apples. Both on the high phenol list! I was giving them to him b/c they did not have sugar. Now I find out I could have been making it worse! Wow. That's an eye opener. I was also giving him a handful of walnuts or almonds as a snack quite frequently and they are on the high phenol list as well. It is really amazing me.

[kim]

Donna,

 

I think Betaine HCI is some thing that is recommended for riding gut strep(????). I have always found the gut PH stuff confusing, since they say that low acid can mimic the symptoms of overproduction. I know agents to reduce stomach acid, long term, can interfere with the absorbtion and even production of some vits, yet if you add acid to the wrong childs gut, you can cause big problems with ulcers.

 

Donna, I think you asked what tests or Dr. are recommended. If you check the top of the forum there is an essential threads option. Claire, who did a lot of great work on this forum has a testing thread there. There is also info on Doc's. Many are using DAN Dr.s (Defeat Autism Now) or Environmental etc. A good CSA or Comprehensive stool anaylsis may be helpful. There has also been discussion here about test strips that can be ordered that tests gut PH. This is an area, that I could use brushing up on too.

 

I'm going to leave these two sites here, so I can go back an read them more thoughly when I have a chance too.

 

http://www.herbs2000.com/h_menu/betaine_hydro.htm

 

Betaine hydrochloride ( HCI )

( Hydrochloric acid )

The digestive process takes place as food passes through the mouth, stomach, small intestine, and large intestine. One of the most important parts of digestion occurs in the stomach, where gastric (stomach) acid helps break down proteins for further digestion in the small intestine.

 

Digestion

Digestion includes mechanical, chemical and absorptive events. Throughout its length the digestive tract is internally lined by a mucus-protected epithelium. Such mucus acts as a lubricant, thereby facilitating food movement and protecting the epithelium from mechanical abrasion. Mechanical events in digestion start with chewing, and continue along the digestive tract through diverse peristaltic movements.

Starch hydrolysis begins in the mouth, through the action of sallivary amylase. This enzyme cleaves starch into maltose, but its action is very short-lived since the enzyme is inactivated as soon as it reaches the low-pH environment of the stomach.

The stomach secretes hydrochloric acid and pepsinogen (an inactive protease). HCl affords some pretection against bacterial collonization, and converts pepsinogen into its active form, pepsin. The stomach itself is protected from HCl and pepsin due to the presence of a thick, alkaline, mucus that neutralizes the acid before it reaches the gastric epithelium.

At the parietal cells lining the stomach, carbonic anhydrase catalyses the reaction:

 

http://www2.ufp.pt/~pedros/qfisio/digestion.htm

 

Digestion

Digestion includes mechanical, chemical and absorptive events. Throughout its length the digestive tract is internally lined by a mucus-protected epithelium. Such mucus acts as a lubricant, thereby facilitating food movement and protecting the epithelium from mechanical abrasion. Mechanical events in digestion start with chewing, and continue along the digestive tract through diverse peristaltic movements.

Starch hydrolysis begins in the mouth, through the action of sallivary amylase. This enzyme cleaves starch into maltose, but its action is very short-lived since the enzyme is inactivated as soon as it reaches the low-pH environment of the stomach.

The stomach secretes hydrochloric acid and pepsinogen (an inactive protease). HCl affords some pretection against bacterial collonization, and converts pepsinogen into its active form, pepsin. The stomach itself is protected from HCl and pepsin due to the presence of a thick, alkaline, mucus that neutralizes the acid before it reaches the gastric epithelium.

At the parietal cells lining the stomach, carbonic anhydrase catalyses the reaction:

[faith]

gfam,

please forgive me but as I re-read your original post, it does seem as though you are pretty clued in -- you say your son started these episodes only three weeks ago? You are not just beginning to look into this now, are you? I mean it sounds as though you have already done some research. How did you know to use epsom salts in this way, and how did you know to look for the triggers, i.e. red and yellow dyes and the preservative/additives? I have a feeling we are telling you things you may already have figured out? Did any of your naturopaths suggest your child may be having alergic reactions to foods? and what were their suggestions/methods of treatment? Did he benefit any from the diet you mention? Also, what are his tics?, he has had these for a while, though, right? you never mentioned any of this to his pediatrition or saw a neurologist? I mean, why did you go straight to naturopath and not any medical doctors, especially if he has allergies/asthma/stuttering. Sorry for these questions, but my curiosity has gotten the better of me.

 

Faith

 

Newbie here...

 

My 10 year old son has been having some horrible episodes of extememe hyperactivity the past 3 weeks. The first & worst episode was triggered by food dyes I think. Yellow & Red. Is is extrememly hyperactive complete with tic's. Behavior varies between pacing for hours on end, rolling around on the floor b/c he's trying to stop it so bad. Unable to sit down. Making noises & can't stop. Shaking. etc... We put him on a preservative/additive/dye & sugar free diet immediately.

 

Let me just list some things

 

He stuttered for 8 years. Wet the bed until last year.

Allergies/asthma

Always hot blooded

ADD

Many annoying habits that we wrote off as just being annoying. Like making noises & not realizing he's doing it.

Started these episodes about three weeks ago.

The more he tries to stop the worse it gets.

They always start right before a meal. Seems to be connected to glucose regulation. If he has a good snack between meals he's usually okay.

A good meal will stop it.

He can tell when they are going to start.

He describes 3 different types of episodes.

Unable to write very well during episodes.

Doesn't remember much of what happens during the worst of times.

Forgets how to do some tasks during these times.

Says he can taste baking soda prior to an episode & craves it terribly during an episode. He will eat it by the spoonful during, but does not want it when he is feeling fine.

Strong Epsom salts baths will almost always stop it.

He can stop when he is reading.

Triggers seem to be additves or preservatives. Dyes etc.

He had been doing good for 3 days & one hot dog sent him into an episode with in 3 hours which set him back for three days.

Unable to stop whistling.

He has periods of calm and is just fine.

 

I'm not sure what to say. We have yet to see an MD, but did go to two ND's and they knew nothing about TS. We do have TS in the family and would like to see if I am on the right track thinking this may be TS. If so, what do I do now? What kind of doc do I even need to go see? What kind of tests? I am at a loss & would really appreciate your opinions.

 

Thanks in advance. I'm so overwhelmed and every second of the past 3 weeks have been spent trying to do something to help him.

Donna

[gfam]

Faith,

 

Let me expalin further. My son & I have struggled with many issues since he was 3 years old and I was not sure what was wrong. Was it my parenting skills? I have 4 children and my 6 year old was able to remember to finish tasks better than my 10 year old and it has been that way for years. I knew something was wrong. No matter what I did I could not help him succeed. We tried pictures, we tried never leaving my side, we tried a mirade of things with him never quite reaching success. Recently we found a list of symptoms of ADD & it all clicked into place. That is my son. ADD. It has not been formally diagnosed, but there is no doubt in my mind. Then about a month ago every day around noon he was start to "jitter". Unable to be still. If you asked him to stop he would look like he was in physical pain. We homeschool so it was easy to see. I sent him out on the tramp, we ate and it would subside. Up to this point no tic'ing per say. All though looking back he does have some curious signs. So then on May 4th we went out to a meeting and the snack was cheetos, doritoes, oreo cookies and pretzels. He ate quite a bit of that & nothing else. I know, not very healthy. On the way home he started to ramp up. Wiggling, inability to sit still in the car, taking off his glasses, twirling them, putting them back on, holding his head, groaning, etc. We got home and he ran around outside and we brought him in and all he could do is pace. I sent him to bed & he literally rolled around in bed groaning. He started tic'ing. He would make these faces & opening his mouth. Doing this eye thing. It was extreme and the more he tried to stop it, the worse it got. We fed him some real food and let him read until he could go to sleep. Reading would stop it. As soon as he put the book down it would start again. He was not able to go to sleep until midnight. I am sure it is the dyes in the junk food he had. Fast forward till now. He has many more episodes of varing intensity, with periods of calm in between. It took about 9 days for the junk to work through. He had 3 good days & slipped and had a hot dog. That set him back for 3 more days. On good days the worst symptoms are he whistles constantly and can not stop with the normal ADD symptoms. His bad episodes are at the most once per day and always seem to happen when he hasn't had food in awhile and it's almost meal time.

 

The reason I have pursued this so soon is b/c the increasing severity and frequency. Also the severity of the initial episode was frightening. It looked like tourettes to me. My cousins son has severe ts and she advised me about the baths and possible causes. He has an appt with an MD on thursday. I really wanted to try a ND first as I am convinced diet is a big trigger and I felt a MD would really want to medicate first. I wanted to give diet a chance first and have some ideas of what was going on before I went to an MD. The ND was not helpful. All he said is "your son has parasites....goodbye". He was horrid.

 

I am not saying Nathan has tourettes. I am sure it is wayyyy to soon to assume that. I honestly don't care what the diagnosis is, as I know that dietary changes can help kids not matter where they are on the spectrum.

 

I mainly wanted to know if my description sounded like my your children. Could it possibly be TS? From the short time I've been here so many peices of the puzzle are falling into place. I am understanding what may be happening in my sons body better & that is really encouraging.

 

Please ask away.

[faith]

gfam,

thanks for sharing your story, didn't mean to put on spot, but it just seemed to me that you were not exactly "clueless" .

 

I am seeing that your real question was if this sounded like TS and is this the kind of symptoms our kids have? And the reason you have not got a clear answer is because we, as you have said, we do not really care what the diagnosis or "label" is, we are a little more focused on what we can do minimize or manage it.

 

But, in answer to that question, all I can say is "maybe", since you do have a relative with

TS? (is it your side of the family?) ( BTW, I would be interested to know how your relative is treating or managing her childs TS? Any meds? Did they refer you to this forum?)

 

And yes, some of these things you mention probably are part of the syndrome, but not all cases are exactly the same. Perhaps your son has more the ADD or ADHD with tics as well? As you say, it is early, and you will just have to see what symptoms he has in the next year or so. Maybe tics will be a small part of this. You could go through some of the threads that have the word "new" in the title, for they are usually the first posts by parents describing thier child's history, perhaps that could give you some things to compare.

 

Well, certainly persue the phenol issue and what you have gotten as clues so far. Incidently that is what I am exploring with my son right now. His symptoms are mostly tics, but does have some inattention/ocd. I have been on this road for a while, but am still trying to figure things out.

 

Faith

[CSP]

gfam,

 

I had a very busy weekend and wanted to send a late welcome. I only read a small part of these posts, as I see I missed a lot over the weekend. I was intrested in how old the other children are who have ts in your family?

 

I was also wondering if you thought his age is a factor in this seeming worse then in the past.

 

CP

[gfam]

Hi CP,

 

My cousins son is 15. I've read 10 is a very common age for TS to be show up b/c of puberty. He's not showing signs of puberty yet.

 

[gfam]

.http://www.tsa-usa.org/ All the best.

 

THanks for that link. It's been very helpful.

[michele]

I agree. I used alot of the suggestions with approaching the schools. Also the OT portion was very helpful to us.

 

Mich

.http://www.tsa-usa.org/ All the best.

 

THanks for that link. It's been very helpful.

[Chemar]

Hi gfam I have been away for the weekend but just wanted to welcome you and have just been reading thru all the great info you have been sharing and receiving!

 

My son has genetic TS, eventually dx aged 10 but likely has had his tics and OCD and tummy stuff since much younger. He is 18 now and dx with Crohn's in 2006 after a few years of misdx symptoms.

 

Because of the agonizing pain that acids cause to the inflamed GIT in Crohn's , my son has learned to eat very differently in terms of spreading his meals into small nutritious ones thru the day, and careful ingredients. That avoids the hydrochloric acid attacks enormously.

 

In his case, fruit really helps his digestion and Crohn's, and he can eat apples, strawberries, but he avoids the very acidic fruits like citrus, pineapples etc, and always has a bit of sliced banana with his other fruits.

 

 

He had thankfully stopped all the artificial chemical food additives years back as he is mega sensitive to those.

 

I make my own daikon radish and other pickled veggies Japanese style and use either cider vinegar or ume plum vinegar, and my son eats a little pickle with each meal.

 

re the TS question...honest from what you describe in your first post, although your son does have what seem vocal tics, I am not sure it sounds like TS as much as a GIT/food sensitivity issue...but as many TSers have those, it really is hard. Glad you got the TSA website and I would also recommend Tourette Syndrome Plus at http://www.tourettesyndrome.net

Leslie Packer has a lot of very helpful info on the spectrum and associated issues.

 

so glad you have found info to help you help your son here too

[gfam]

Thank you Cheri,

 

I did forget to add the facial tics. During the worst of the episodes he would open his mouth and grimace his face. He said it felt like there was pressure and doing that would help it go away. Also taking off his glasses, twirling them, putting them back on.....repeat........repeat......

 

Wether it is TS or severe food reactions it is obviously too soon to know, but no matter what the diagnosis the same types of thing will help. That's all I care about now. It is so painful to watch & for him to endure, we will go on any diet possible if it will help.

 

Any observations or comments about this situation would be greatly apprectiated!

[gfam]

Oh, I forgot to add he very frequently repeats what others say to him under his breath. He's always done that. Could that be echo.... Sorry, don't remember the name for it.

[Chemar]

yes, facial tics and echolalia would sure move more into the TS area.

 

on that TS Plus website there's a list of the various tics http://www.tourettesyndrome.net/Files/CommonTics.PDF

 

it's great that you are cleaning up diet as well as investigating all aspects for yourself. honestly I was so shocked when my son's TS switched on big time just after his 10th birthday as he had very very severe tics and raging OCD, depression and anxiety. Altho I started researching as much as I could, I was so worried becasue of the severity of it all, that I relied too much on conventional docs and their standard treatments instead of following my own leanings toward alternatives. Since implementing chemical free and organic whole foods and the other things (like epsom tubs, acupuncture) I have seen first hand how his health has improved both for the TS/ADD/OCD as well as his GIT/Crohn's