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anyones kids have multiple severe symptoms?


airbucket

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I am probably just writing this out of sheer frusturation, but i am starting to get that very isolated feeling again regarding my sons symptoms so i thought id post.

 

he is 8 yrs old, Dx with Tourettes in March 2007, but has always had behavior, emotional, language issues. We went OFF abilify a month ago and now things are even worse. I was wiaitng patiently for the medicaiton to be out of his system, but now a month later he is a wreck. the problem is that the tics are by far the least of the symptoms! Does anyone here deal with other symptoms that are worse than the tics?

 

We are going to see Dr Murphy at U of Florida on Dec 14th and I cannot wait as i am so confused and desperate now. My son is having the creepiest mood swings, usually depressive, to extremely angry with severe violent outbursts out of nowhere. He usually starts the day ok, pretty happy, more himself, but as the hours wear on he gets to a point where he is just miserable, rolling around and getting angry. he dosnt know what he is feeling, cant explain, just says he is angry or wishes he was dead. He is obsessed with one and only one topic (dinosaurs), he is being very oppositional, argumentative OCD and irritable. He does tic, just midly and not all day. I have him on a pretty clean diet, not GF but clean and organic, no sodas or junk, and vitamins plus magnesuim w/ calcium. He is also on Inversine for the tics. I have no idea if the inversene could be the problem?

 

I know none of you are doctors, i am simply wondering if there are any here whose children have other severe symptoms? I cannot imagine anyone would classify all this under simply TS. He is enraged daily, he is depressed daily. He has wierd patches of irritated skin and dark circles and complains of his tummy every hour (he does have an unexplained duodenal ulcer) - i have removed the artificial colors and preservatives and still these extreme behaviors persist. Now i fear i should have listened to our old psychiatrst and put him on Risperodol - right now he cannot even attend school his behavior is so wacky! anyone out there been here? thank you!

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He is enraged daily, he is depressed daily. He has wierd patches of irritated skin and dark circles and complains of his tummy every hour (he does have an unexplained duodenal ulcer) - i have removed the artificial colors and preservatives and still these extreme behaviors persist.

 

I assume your son had an endoscopy if he has a duodenal ulcer. Did they do blood tests and take biopsies to check for Celiac Disease? My son has stomach aches, nausea and explosive uncontrolled emotional behavior when he eats gluten. He has been on a gluten free diet for years, but does not have a firm Celiac diagnosis. We know he has had trace amounts of gluten from cross contamination when his behavior takes a nose dive. He also states he hates himself during these times.

 

If your son's GI doctor did take biopsies you could always get a second opinion on them or you could just give a gluten free diet a try. Unfortunately damage from Celiac can be patchy and it is sometimes difficult to get a "gold star" diagnosis. If your son's behavior goes downhill through out the day take note of what he is eating and how his behavior is. Sometimes there is a delay in a gluten reaction so it may be difficult to figure out.

 

Have his "weird patches of irritated skin" been checked out by a dermatologist? Dermatitis herpetiformis is a skin manifestation of Celiac Disease. Here is a link describing it and showing pictures so you can evaluate if this is a possibility. http://www.csaceliacs.org/dh_symptoms.php

 

Dark circles under the eyes can also be indicative of food allergies. You might want to consider delayed food allergy testing (IgG based).

 

Keep researching so you can be armed with information before your appointment.

 

--Judy

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I know none of you are doctors, i am simply wondering if there are any here whose children have other severe symptoms? I cannot imagine anyone would classify all this under simply TS. He is enraged daily, he is depressed daily. He has wierd patches of irritated skin and dark circles and complains of his tummy every hour (he does have an unexplained duodenal ulcer) - i have removed the artificial colors and preservatives and still these extreme behaviors persist. Now i fear i should have listened to our old psychiatrst and put him on Risperodol - right now he cannot even attend school his behavior is so wacky! anyone out there been here? thank you!

 

 

It sounds incredibly stressful. We've been through those times. The patchy skin and dark circles sound like digestive trouble and allergies. The ulcer would also lead me to believe that there is a digestive imbalance. Have you done an elimination diet with him?It might give you important information.Any exposure to cleaning solvents, chlorine, insecticides? We've had horrible suicidal rages,several days in a row, after exposures to chlorine in a jacuzzi, and floride treatments!

When we moved and started to use city water we had to buy bottled water and to put a filter on the shower! How do weekends compare to school days? Maybe there is something environmental at school. My DS does well with epsom salt baths, melissa tincture and rescue remedy when his mood starts to spin out of control. I hope that things start to get better.

 

 

Laurie

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I know none of you are doctors, i am simply wondering if there are any here whose children have other severe symptoms? I cannot imagine anyone would classify all this under simply TS. He is enraged daily, he is depressed daily. He has wierd patches of irritated skin and dark circles and complains of his tummy every hour (he does have an unexplained duodenal ulcer) - i have removed the artificial colors and preservatives and still these extreme behaviors persist. Now i fear i should have listened to our old psychiatrst and put him on Risperodol - right now he cannot even attend school his behavior is so wacky! anyone out there been here? thank you!

 

 

It sounds incredibly stressful. We've been through those times. The patchy skin and dark circles sound like digestive trouble and allergies. The ulcer would also lead me to believe that there is a digestive imbalance. Have you done an elimination diet with him?It might give you important information.Any exposure to cleaning solvents, chlorine, insecticides? We've had horrible suicidal rages,several days in a row, after exposures to chlorine in a jacuzzi, and floride treatments!

When we moved and started to use city water we had to buy bottled water and to put a filter on the shower! How do weekends compare to school days? Maybe there is something environmental at school. My DS does well with epsom salt baths, melissa tincture and rescue remedy when his mood starts to spin out of control. I hope that things start to get better.

 

 

Laurie

 

thank you both for the replies.

 

he did test "uncertain" for celiac. i dont know why the tests were inconclusive. anyhow we first tried a GF diet when he was about 4, did it for a short time but i didnt see the miraculous transformation everyone talks about so i stopped because he would rage for his sugar and breads. Now im not sure what to think. it seems almost impossible to tell since his moods are so up and down, they can change any time so i dont know how to track it other than to eliminate gluten and wait and wait. He eats gluten everyday currently. But can gluten truly cause these outrageous symptoms of violence and emotional chaos?? I am having a h**l of a time as it is just sticking to a feingold-TYPE of diet with all natural/organics. Everyday we fight for an hour over doritoes and white bread and all his crunchy bready things that he loves that ive cut out. i cannot imagine how bad it would be doing GF, but i guess i should try. The outbursts were just happeing at school until it happened at home yesterday. there are days or have been, where he has eaten all kinds of junk, and gone swimming in chlorine and had gluten and still he had a GREAT day! so how can i tell whats what? he isnt swimming now, ive cut out all chemical cleaners at home except for his soap and shampoo. we do have carpet in the bedroom, i mean i feel like i could come up with 1000 things it could be, but i am still hard pressed to believe that these triggers can cause such horrifying symptoms! And im still confused as to what disorders are caused by environment/food and which are jjust simply chemical problems inborn, that the child is born like that. I know my son has had problems/been different since he was a baby.

 

we are contacting a DAN doctor next to tackle allergies and other such things. It is so tempting tho to listen to the psychiatrist when he tells me that TS is a multi symptom disease and he was born like this and he needs medicaiton to balance the chemicals in his brain. thank you so much for your suggestions.

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Sounds like possible allergies to me especially if he is complaning of tummy trouble . If your son is craving foods like bread and chips I would most likely think it is casein or gluten or both.

 

A friend of mine sent me the following theory by email,

"My friend's theory: Casomorphins from the digestion of casein and gliadinomorphine or the gluten exorphin from gluten break down into nearly identical peptides. They are very difficult to digest and when incompletely digested, they interact with the opioid receptors. The opioid receptor is meant to react to its natural ligands such as endorphin. However, it can react to drugs such as morphine and also to exorphins such as casomorphin and gluten exorphin. This is proven fact, but now I move into my conclusion.... My thinking is that just as the opioid receptors in the CNS become habituated and NEED heroin, maybe the opioid receptors in the gut (or CNS again) become habituated and NEED the casomorphin or gluten exorphin."

 

http://www.childrensdisabilities.info/alle...rsprotein7.html

 

It wouldn't hurt to try casien free gluten free for a few weeks. If your son has a problem with these two removing them from his diet can be like taking heroin from an addict. This could possibly explain the outbursts.

 

LOL,

Dylan's mom

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we first tried a GF diet when he was about 4, did it for a short time but i didnt see the miraculous transformation everyone talks about so i stopped because he would rage for his sugar and breads.

 

It can take a month or more to really learn the basics the gluten free diet. When you tried the diet were you using shared condiments such as jelly and butter that might have had crumbs in them? Did you have a dedicated gluten free toaster or toaster oven? Many items that seem to read to be ok based on ingredients might contain gluten. I initially made that mistake with a rice cereal that had malt (barley) in it. Anyway, crumbs can make a difference. Is there a support group (either Celiac or Gluten Intolerance Group) in your area where you could get some tips on shopping in your area? Here is a great website for some basic information and to ask questions about the diet or your son's symptoms http://www.glutenfreeandbeyond.org/

 

The summer we did a gluten challenge on my son was extremely stressful because of his emotional instability and anger. It sounds similar to what your son is going through. He must feel awful. I am really sorry you are going through this.

 

--Judy

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