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I started this other thread http://www.latitudes.org/forums/index.php?showtopic=3485 so some of you are familiar with my son's story but I am just so confused. Starting about a month ago my son has fluctuated between periods of calm that will last 3 or 4 days to episodes of extreme uncontrollable hyperactivity complete with vocal and various body tics. The first episode was the worst but he has had several since then that are almost as bad and many that are not as severe. I pulled all preservatives,dyes, additives and suagar. The worst of the episodes were always triggered by a diet oops and would take anywhere from 8 to 3 days from him to get back to good days. The episodes last several hours. He has been fine the past 4 days with only minor whistling and normal hyperactivity. We ordered the feingold diet and the starter letter said sugar was ok so we added a small amount of sugar back yesterday and that was a bad idea. He started to ramp up again last night, but a natural calm drink & ES's bath stopped it affectively. He was still jittery this am, but okay & then 2 pm today he says "mom, it's starting again" and boy was he right. He jumped for an hour on the tramp and still could not even stand still, let alone sit. This time he started flinching like he was being dive bombed by a bird and looking around like someone was sneaking up on him. He said he just had a feeling. Spooky. All the time pacing around. We were out of ES's, but gave him the drink. He can be still if he reads & will almost desperately find a book to help control it. Could just a little bit of sugar do all this? How does sugar affect phenols & sulfates? What am I missing???? He was supposed to go to the MD today, but our car was in the shop. When he has these episodes he's hot, flushed, craves baking soda, sometimes tic's, sometimes not, they are never exactly the same. Afterwards he is exhausted. The following are the rest of the observations I have made from the other post. 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. During the episodes he has facial contortion tics & hand tics and he has always repeated what other people say. He's on Omega 3,6,9 , lecithin, magnesium, chromium, claritin, nasocort and I think that's it. We are starting the feingold diet as soon as it gets here as I already know that dyes are a big trigger. I am just at a loss. What am I missing here. He can do for days and just be calm as can be. One slip in the diet & he's in the throws of it again. He is sooo upset by this and it so hard to watch. We are keeping a details food diary & video taping too. What else can we do? Help..... I don't know if this is TS, but I know I need to help my son.

Cheri, See that is just the thing. I have had so many people say in a shocked voice "You haven't taken him to an MD yet"??!!" Yes, I am going to take him to rule out anything physiological, but I do not think the answer lies with an MD. The answer lies in studying my son and doing my own research. The key is diet for Nathan. Of that I am sure.

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.

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!

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

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.

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.

Have fun at the barby! Thanks for the tip. I found some lists. Gotta love google.

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.

Can someone point me to the list of foods high in phenols? I am going to get the Feingold diet, but don't have it yet & would love to see this list in the mean time. Thanks!! Donna

Faith, The book sounds wonderful & I am picking it up at the library tommorow. As far as the baking soda connection I may have figured it out thanks to the link Kim provided. If histamines are released during these episodes they create a more a acidic enviroment in the body and is involved in acid secretion in the stomach. The link I found does not specifiy if it increases or decreases acid, but if it increases acid in the stomach than it would make sense that he would naturally want more baking soda during these times. Carolyn refers to taking apple cider vinegar to help balance the ph and baking soda would lower the ph as well. Every time he has these episodes he naturally goes to the box and eats it in small amts. I knew there was a connection and thanks to the wonderful info here I am *starting* to understand the why a bit. The episodes are always after having something with dyes,preservatives or additives and it takes days to get out of his system. No new vaccinations in years, no bloodwork, he has seasonal allergies that is managed with nasocort & claritin. Epsom salts baths almost always calm him. Right now his diet is very plain and strict. If I can't spell it doesn't go into him. Plus no sugar of any kind or dyes etc. I've been reading about sulfates and phenols in the Carolyns posts and it is all starting to come together. I have so much to learn yet and am so thankful I found this place. We have struggled for so long with this child feeling tha something was wrong with our parenting skills and knew something was different about this child. I told Nathan about the phenol, sulfate, dyes connection in his body as a reason for these episodes and he literally laughed out loud with relief. He was so happy. I understand there is a ways to go, but just having that explanation to they whys have been so helpful. The one thing that is still not making sense is why do these episodes almost always seem to come when he hasn't snacked and right before a meal. Does the build up of phenols affect glucose regulation as well? Does anyone have a link to the list of high phenol foods? My next step is to look into the Feingold Diet. Thanks!

Thanks Kim, He only craves the bs sporadically, when the episodes are the worst. I know there is a link here, I'm just not sure what it is.

Is it this book? Is this your child? : discovering and treating unrecognized allergies

Wow, interesting. Can you tell me if Arm & Hammer Baking Soda has aluminum in it? It doesn't say so on the box. I thougt it was baking powder that could be high in aluminum. Thanks. Donna

Thank you Michelle, I am most interested to find out if this baking soda craving during episodes and seeming problem with glucose regulation are associated with TS. Episodes seem to always happen if he hasn't eaten prior to a meal and will go away with in the hour once he eats a meal. Plus the feeling hot & flushed during bad times. These seem to be keys to me, but I'm not sure how. Do these symptoms sound like any of your kids? Thanks! Donna

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