I am terrified!

[Giselle]

Oh, please anyone, I am so terrified. Tonight Little Hoyt told me, as I was lying down with him as he fell asleep, that he heard voices. There is a family across the street that has teenagers so I thought it was them. He told me "No, in my head." I was instantly 12 bell alarmed but didn't let on and asked if they were talking to him. He said "No, they are just yelling". I asked if this is the first time it had happened and he said no, that it had happened at school and that it had made it hard for him to do his work. He said he couldn't fall asleep because of it, that he tried to think of something else and then he would hear the yelling. I told him to not worry but to tell me everytime this happens as I want to write it down so we can try to figure out if perhaps it was in conjunction with something he ate or if he was over-tired so that we could try to figure out what it was - this made him feel much better (we have done this before with allergy type stuff very successfully so it seemed plausible to him that this would work all the while I'm just screaming inside). Please, please tell me that this has happened to someone. I have been crying since 8:00 as I am so terrified that this is schizophrenia. I went over to their board and looked around but not much and read all the major websites for this disorder. I am so confused and scared. Please pray for us. One website talked about t. gondi (from cats) being a factor as well as viruses - which we are actually going to be testing for this week - I will have the doctor add t. gondi to the list of things to test. Early symptoms that they said to watch for that he has anxiety and oversensitivity (or undersensitivity) to external stimuli such as sounds, taste, touch and smells (he definitely has this in spades!). And now the voices? Please someone help!

 

Giselle and Hoyt

[Irena]

Hi Giselle,

I've just read your post and I am very sorry.

I'm sure the people here will come out with good advice and comfort. But as they are probably still asleep I just wanted to say that I am praying for Hoyt and for you and I will.

Irena

[Chemar]

Giselle

dont panic! this may well be related to OCD. A common thing with OCD is "my mind is telling me"

This may be what Hoyt was experiencing.

 

((((HUGS)))) and

gotta run

[kim]

Giselle,

 

 

You have been able to accomplish miracles with Hoyt, and you'll figure this one out too. The emotional elements to TS can be toughies, whether it's anxiety, rage, or what Hoyt may be experiencing. I read somewhere, "if it's mental, it's physical." Look what someone shared recently about hallucinations. I would just bet she'll be here with encouragement, and some wonderful advice.

 

I have a friend who's sister has schizophrenia. I would have NEVER known it. Yes, she takes medications, but pyrulouria (sp) fits their family to a tee and I have wondered about that many times. The voices are just another symptom Giselle.

 

I would search Pub Med and see what deficiencies, or brain chemicals are usually involved. Maybe that would provide a clue on what might be off, with Hoyt right now, if this is truly even a problem.

 

B vits, zinc/copper and your viral panel are the first things that come to my mind. You know I'm no authority here, and I'm sure you will get better advice, but I had to let you know, I'm here for you, however I could possibly help, even if it's just to let you know how much someone else cares.

 

Hugs and Prayers

 

Giselle...Just noticed this saved to favorites. Not even sure why it's there, but I scanned it and it looks like something you may want to read http://www.schizophrenia.com/treatments.htm#vite

 

http://www.acnp.org/g4/GN401000008/Default.htm ... might want to run by Hoyt's Dr?

 

http://www.drlwilson.com/Articles/copper_t...ty_syndrome.htm not sure about the credentials here,(you can read resume) but I have found some parts of this really helpful.

Kim

[Sydsmom]

Giselle,

 

I know EXACTLY how you feel. Last fall my 8 year old son (no signs of TS so far) was having bad rages and telling me through tears of his own that he was hearing "voices" yelling in his head. Fear gripped me too. The first thing I did was pray. That's just how I approach all the problems in my life and the lives of my children. Prayer for wisdom brought me to this site and all of the knowledge I've gleaned from here. Brandon and I both prayed and I told him anytime he heard those voices to pray.

 

The 2nd thing I did was make an appt. with a psychologist. I was terrified to tell her that Brandon was hearing voices - but I did and asked if she thought he were schizophrenic. Her opinion was NO. She said, if you told me he heard voices from say his alarm clock or something else then yes. That brought me some comfort. As she dug, we found that Brandon was so frustrated and angry at the way his sister has treated him his whole life. Until we started these natural remedies with Syd her depression and anger was bad and she took it out on Brandon. Also, last summer my husband's 16 year old nephew stayed with us for 6 agonizing weeks. He himself was full of anger and rebellion and treated Brandon badly. The poor kid couldn't take it anymore. After sharing with this psychologist, I could see the pressure and everything just start to lift from B. He saw her 4 times and told me he felt better and didn't think he needed to talk with her anymore. She felt they were good too. He sometimes has rages but it's if I've let him have too much sugar and when he's in them we pray and sit and talk to try to dig and find out what's really bugging him. He has never mentioned anything about the voices anymore. I've asked and he says he hasn't heard them.

 

I hope this brings you some comfort. It may not be what you initially think.

 

Lisa

[Giselle]

Thanks so much all of you! Obviously last night I was frantic reading everything I could - I found some amazing stuff. Amazing in a lot of stuff that you have to rule out first was stuff we are all too familiar with! Some things to rule out were yeast, strep and PANDAS!!!! Nutritional evaluation including B6 deficiency, allergy, cealiac disease, gluten sensitivity etc. etc.!!! Even the NIMH talked about omega-6, omega-3, glycine therapy!!!! WOW! How come if you here voices you get all this natural stuff and studies on natural stuff yet you go to the same places for Tourettes and find medication, medication, medication!! I ran!!! not walked!!! to his DAN Doctor this morning who instantly saw me and added toxoplasmosis to the list of virus titres to do tomorrow (to rule out the T. gondii bacterium from our dumb cats - I swear if he has this I'll personally wring their necks!!! Joking - sort of ).

 

Just got off the phone with the Environmental Doctor who told me she was "alarmed but to not to worry". That all of this stuff is so inter-related and very much tied to defidiency, yeast, allergy - all the stuff he's got. GAME PLAN: We are doing the tests I talked about on another thread plus (we had already been going to do some tests because he'd started ticcing a lot again), an OAT test, amino acid level test, CBC, the virus titres, upping his P5P, adding biotin, calcium citrate and multitudinous prayers, oh and Rescue Remedy and B12 for me!

 

One thing I forgot to mention, and I almost wrote about this last week, but because I've been so busy I erroneously ended up giving him his breakfast vitamins at dinner time three days in a row (they include energizing vitamins so I give them in the day). The main differences are extra P5P (B6),zinc, glutathione, L-carnitine. His tics went completely away again (I think most of you knew that he'd had a resurgence lately which I'd chalked up to seasonal allergies and why we were doing some blood work). I began thinking maybe pyroluria is part of the problem. Originally when we had him tested he showed a level 9 but he'd only been off his vitamins for two days and I hadn't put the sample in tin foil and neglected a few other things that FJ* has since suggested. I thought if I were to do it again I would do those things but since his level was nine even if he had it we were at least keeping it in check by the things we were doing. But with his tics going away with the extra P5P (B6) and zinc I wonder. It just so happens that a lot of schizophrenics have pyroluria too. So again all part and parcel.

 

Reading this back I sound schizophrenic myself and feel my mind bouncing all over the place but this is the best I can describe what's going on at the moment - wish us luck and I'll keep you posted!

 

Giselle

[Giselle]

We are sooooo much better! Upon reflection he decided it wasn't really voices as much as a loud kind of noise. We had a huge discussion about getting angry and that it was O.K. He really liked that - he's a bottler - but told me he didn't know what that had to do with his ear - I laughed. He also mostly noticed it when he lay his head down and said that it was changing to a far away ringing. I think it was left over from being so sick. I told him to tell me whenever it happens and he said he would. He told me a couple of times and hasn't since. I really think it was fluid left over. Time will tell.

 

His tics are back to nothing again and it seems that whatever was bothering him (I think something was blooming) is no longer doing so. Of course we still adhere to the gluten, corn, soy, dairy, dye free diet - it's actually a way of life now - everyone wants my pancake/waffle/tortilla recipe after they've tried them - so light and yummy! If I introduce any of his allergens in any quantity he reacts with tics (especially corn). We still see a chiropractor twice a week.

 

He just actually came in and I asked him "are you hearing that loud ringing noise?" He said "no, not since that time long ago" and off he dashed outside again (California weather is gorgeous today and he's creating some sort of masterpiece outside!)

 

Thanks to everyone for their support!!!!

Giselle and Hoyt

[kim]

Giselle,

 

I'm so glad to read that post! I thought of you and Hoyt everyday since you were last here.

 

So glad things are better.

 

Kim

[Sunshine]

Giselle

 

I am SO thankful to read your post! YEAH!!!... GREAT NEWS!! (I saw your other thread too, but will just post a big cheer for you and Hoyt here). It's people and stories like yours that keep me searching for answers for my son!

 

Take care!

[emily]

We are sooooo much better! Upon reflection he decided it wasn't really voices as much as a loud kind of noise. We had a huge discussion about getting angry and that it was O.K. He really liked that - he's a bottler - but told me he didn't know what that had to do with his ear - I laughed. He also mostly noticed it when he lay his head down and said that it was changing to a far away ringing. I think it was left over from being so sick. I told him to tell me whenever it happens and he said he would. He told me a couple of times and hasn't since. I really think it was fluid left over. Time will tell.

 

His tics are back to nothing again and it seems that whatever was bothering him (I think something was blooming) is no longer doing so. Of course we still adhere to the gluten, corn, soy, dairy, dye free diet - it's actually a way of life now - everyone wants my pancake/waffle/tortilla recipe after they've tried them - so light and yummy! If I introduce any of his allergens in any quantity he reacts with tics (especially corn). We still see a chiropractor twice a week.

 

He just actually came in and I asked him "are you hearing that loud ringing noise?" He said "no, not since that time long ago" and off he dashed outside again (California weather is gorgeous today and he's creating some sort of masterpiece outside!)

 

Thanks to everyone for their support!!!!

Giselle and Hoyt

I am new at this, so could you please answer some questions for me? How did you find out to take away the gluten, soy, dairy, etc. Did you see an environmental physician and get his tested for those allergies? Does the chiropractor help? Someone else told me their child is tic free for 2 weeks after chiropractor visits. What do you feed him now - that is so many things to rule out. I need major help. Please help me.

[Giselle]

Hi Emily, we found his allergies by having a delayed food allergy test done. It is a blood test and his DAN doctor requested it. My son isn't Autistic but the DAN protocol is amazing - looking for physiological problems that most ignore. DAN stands for Defeat Autism Now. I believe many Environmental doctors will call for the same test. The chiropractor helps immensely. Just seeing a chiro for him doesn't eliminate the tics but it keeps him aligned and hence his immune system benefits - the more he's out of alignment the more slight things effect him. If he's having a particularily painful tic an adjustment always seems to "move" it to a less bothersome place. For example when he was having a horrible neck tic the adjustment seemed to straighten that out and the tics ended up being simple finger crunches (less impactful for sure).

 

Food wise you'd be amazed at what he can eat. Most fruits, meats, eggs, vegetables, and sugar. Potatoes, rice, tapioca, amaranth are all great substitutes when making bready type stuff. There are so many ready made products you just have to read lots of labels. I have an amazing pancake recipe that anyone who tries likes better than the heavy wheat pancakes people know. It is tough though at first - it's second nature for us now. I was so frustrated at first because almost EVERYTHING we knew and loved contained something offensive. Most processed foods are out the window. That first trip to the grocery store was exhausting. I started out making all sorts of mistakes but now know what is safe and what isn't. I make most everything he eats which if you knew me you would laugh at - I HATE TO COOK but do it for my son happily. Eating out is more complex as we've had to find safe things on menus. You have to be the person who asks about all ingredients and asks for special things like instead of fries we ask for fruit (which we gladly pay for but usually they don't make us). I have to bring snacks with us where ever we go. Its amazing how the kids end up asking Hoyt for some of his stuff because he usually has all sorts of yummy cut up fruit, brownies and cupcakes (homemade) and even candy which I order on line. It only has sugar and no corn syrup - it tastes amazing, like old fashioned candy used to! It is overwhelming but I urge you to do it - it is amazing how much it helps. I mean I really understood why I had to do this when I realized what exactly the delayed food allergy test was testing - I didn't have a choice. The test shows the person's body mounting antibodies to the various food allergens. ANTIBODIES! That means the body is fighting lets say bananas like it fights the flu or polio or some other sickness. How taxing that must be for his little body to be fighting off a sickness each time I give him a slice of pizza. I wouldn't hand him a tetanus lollilpop or a flu sandwich but that was in essense what I was doing by continueing to feed him his allergens. By taking those stresses off his immune system he does so much better.

 

It isn't going to happen overnight - the knowledge comes bit by bit, by trial and error. Take your time and don't give up. Read all that you can here and over at Brain Talk. Finding a DAN doc or Environmental doc is really necessary as they can really help guide you through all this and order various tests. Good luck and welcome!

Giselle

[Mr_Burns]

Oh, please anyone, I am so terrified. Tonight Little Hoyt told me, as I was lying down with him as he fell asleep, that he heard voices. There is a family across the street that has teenagers so I thought it was them. He told me "No, in my head." I was instantly 12 bell alarmed but didn't let on and asked if they were talking to him. He said "No, they are just yelling". I asked if this is the first time it had happened and he said no, that it had happened at school and that it had made it hard for him to do his work. He said he couldn't fall asleep because of it, that he tried to think of something else and then he would hear the yelling. I told him to not worry but to tell me everytime this happens as I want to write it down so we can try to figure out if perhaps it was in conjunction with something he ate or if he was over-tired so that we could try to figure out what it was - this made him feel much better (we have done this before with allergy type stuff very successfully so it seemed plausible to him that this would work all the while I'm just screaming inside). Please, please tell me that this has happened to someone. I have been crying since 8:00 as I am so terrified that this is schizophrenia. I went over to their board and looked around but not much and read all the major websites for this disorder. I am so confused and scared. Please pray for us. One website talked about t. gondi (from cats) being a factor as well as viruses - which we are actually going to be testing for this week - I will have the doctor add t. gondi to the list of things to test. Early symptoms that they said to watch for that he has anxiety and oversensitivity (or undersensitivity) to external stimuli such as sounds, taste, touch and smells (he definitely has this in spades!). And now the voices? Please someone help!

 

Giselle and Hoyt

You'll have my prayers this evening

[kabaza]

I can relate to where you son is coming from. When I was about his age i had confronted my mother about the voices that i was hearing in my head. The voices would occur more commonly in school, or when i was upset about somthing. Sometimes the voices would tell me to do somthing bad when i was angry or upset about somone, or something. or tell me somthing that i didn't want to hear because it frightened me. I would than have to think about somthing else to keep my mind off of what the voices were telling me. I have never told anyone about the voices in my head except for my mother when i was about 11 years old. But as i had gotten older the voices had seemed to stop almost completely.

[dan]

Hi everyone,

 

For whatever it's worth, my 8-year-old son has had occasional hallucinations, both aural and visual. The aural ones started a year ago and occurred primarily at night while he was in bed but not asleep. He said he heard voices arguing with each other. I don't think he's had any of these for a while now. The visual hallucinations are more recent and started out as human figures he'd see out of the corner of his eye, but lately he's had a few where he saw a figure straight-on. That's what happened this morning, when he saw the dark figure of a man with enough detail to see the hands. He was somewhat upset by this but not freaked out or anything. I explained to him that it's nothing to worry about, and that the hallucinations are caused by his brain in the same way as the tics are. That's my understanding of it. Other than fits of oppositional-defiant behavior, which seem related to his tics, my son appears to be quite normal psychologically and doesn't at all fit the profile of schizophrenia or anything like that. He was examined thoroughly by a psychiatrist as part of a team evaluation done with a neurologist, and the psychiatrist said my son was very normal and happy except that the tics were making him miserable. That was a year ago, right after his tics emerged as a major problem (he'd only had mild ones before), but now his tics are much, much better, I'd say at least 85% improved and not noticeable by other people. His oppositional-defiant behavior is much better too. The combination we've found that seems to help him is Bontech TS-Plus Control, EPA/DHA, Bifidobiotics (a probiotic), Country Life DMG (we've tried other brands, but for some reason they don't seem to work as well) and guanfacine (a tiny dose, 1/2 gram twice a day). We also keep him off corn, cheese, sweets and artificial anything.

[CKJ]

My 6 yr old dd has PANDAS (mostly TS symptoms but some OCD too) and she told me that "there is a person just like me, it looks just like me and is as tall as me but its not me and it tells me what to do". It freaked me out too, but I had been reading a lot about OCD and knew that many children describe OCD as another person so I attributed it to that. The part of the brain that if effected by TS, OCD, PANDAS, etc....is responsible for psychological functioning as we know, and as much as it scares the heck out of me, I've seen so much bizarre behavior from my daughter since all this started that not much surprises me anymore.