Cum Passus
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Chemar,
I have to tell you... I had to take a double look at your picture.
I look a lot like that photo.
God Bless
C.P.
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Hi Calicat,
First I wanted to welcome all the newcomers, Bnichola, mblack, Owen'smom, and BeckyG. Sorry, I have been preoccupied with my son's dizzy spells. I truly hope and pray you all find answers quickly.
Calicat, I really feel for you. I had the same problem with my mom and my husband. My husband has TS and he thinks/thought because he turned out OK our son would be just fine. He hated the fact I would take sweets away from our son. I know I needed to hear our son would be just fine I just couldn't take the chance that he is a different person, and maybe he wouldn't outgrow TS as well as my husband did.
I think you will always be wondering (what if) and for your peace of mind I agree with you, get everyone on the same page. I hope that wont be too hard. Is there any articals about how bad art. food/color ect... is that you could share with those near and dear to your daughter?
Good luck,
C.P.
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Dylan's Mom,
Hi and welcome, could you tell me more about the vaccine blockage. I don't understand what that means. How does your Dr. know there is a blockage in the basil ganglia.
I'm very happy for you and so glad you are sharing your story.
Take a deep breath... I think we all are going to give your typing fingers a workout.
C.P.
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Hi bmom,
Could I ask what was the name of your tests? Funny thing he came up with no abnormality for carbohydrate metabolism on the Metamatrix urine test. The tissue mineral analysis from the hair came up with the sugar/ carb tolerance not good. (So which one is right?)
Yes, breakfast is a pain isn't it. I do have to the egg alot because the eggs came up as no allergy. I do get him bacon from Whole Food that only has pork, water, sea salt, and cane sugar. Make him a wrap with organic tortillas, bacon, lettuce, tomato, kind of like a BLT for breakfast. He only gets that once a week. I have given him hamburgers, no bread. Yogurt with berries. My son can not do soy, so I'm not sure what is out there with soy protein you could do, (if your son can have soy?) Oh yes, and a Big glass of milk. He had early lunch 11:45 compaired to some kids in his school who had lunch at 1:30. He said at about 11:00 is when he would start to feel hungry.
He is not that picky at 13 he just wants FOOD!!! He has even asked to eat leftover ribs for breakfast.
Hope that heps a little.
C.P.
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bmom,
I think you have a great start. I can relate to the " I have never seen him tic before" That is how it hit my son. around 8 or 9 yo. But they would go away for months, and I never knew what TS was. My husband has no noticable tics, and he was not dx as a child so it when over his head too. It wasn't until the explosion that we were, " This is not right." I hope you have a great jump start on his health now, and that will help when he is 10-13 yo.
I think it was Claire who said her son has done so well during those pre-teen years. That is such good news for all of you parents who are cleaning up your children's diet now at a young age.
Good luck, and mayby now that summer is here, you will have the chance to try new vit. and don't have to worry about school.
C.P.
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Thanks Chemar,
Patty, he just started having them. I feel so bad for him it is freaking him out. He said he feels like he is in a dream, things around him look and feel funny. I kept him home from school today. He was bummed because it is field day.
I'll feel much better once the MRI is over with on Mon.
C.P.
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Thanks Chemar,
We did have him at 1000mg of cal and dropped him one tablet because of all the milk and kefir he drinks.
It would be about 660mg of cal now plus what he gets in the milk and kefir. He does take 50mg of zinc.
Do you think one teaspoon of Natural calm at 205mg would be good, or do you think, he should have 2 teaspoond at 410mg? Just want your opinion because I think you may have more knowledge about TS then his Dr.
Thanks again,
C.P.
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OK, had the ped. look at son this morning. He spent a lot of time on him, and does not see anything wrong with him, but wants an MRI done.
The intergrative Dr. thinks it could be to much Magnesium, and would like me to cut back. Chemar, do you think 615mg of mag. is to much? He should be balenced with cal and zinc.
He was taking the mag supp. for about 3 months before his vitamin tests were done, and those tests still had him low mag. I am fearful of the effect on the TS if I reduce the mag to much.
He is doing so well right now I hate to mess with the supps. I would be so happy for any help.
Thanks,
C.P.
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Thank you all so much. He seems fine and is off to another ball game.
Chemar, if it is the B12, is this something you all stay away from, or do you just reduce the amount?
Sydsmom, I know the pollen has been so bad this year and it could be that, he was out side all the times the dizzy spell hit him.
bmom, thanks for asking about my youngest. She is still blinking, the tongue is less but there sometimes. She is clearing her throat now too. I noticed her eyes are bloodshot. She is so aware of TS that she keeps telling me it is not TS. I have never even asked her. She thinks she feels ichy eyes and the throat she says is scratchy. I tried to do a test and gave her a teaspoon of olive oil to see if that coated her throat. She said it helped, so I don't know where we stand with her. I know she has an allergy to grass, so I guess it is possible it is allergy related.
My oldest has always been 95% in growth. the other two have been 5% in growth. So I get nervous the youngest is to much like her brother. I just hope and pray not in the TS dept.
C.P.
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Michele,
I really understand your fear. Keep praying, God will take care of you and your son. Just give it a little time and stick to the healthy diet. I really really believe we are what we eat.
The change in my son in four months of meat, raw fruit and veggys, has my son listed at school as the poster boy of an amazing turn around. This child was screaming for three months.
God Bless,
C.P.
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Hi guys,
About a week ago my son had a dizzy spell. We thought it was from the heat. Then last night he had another one, it is not hot here right now. This morning my husband called, and said our son had another dizzy spell. They are on a field trip, thank goodness my husband is with him. I made a call to the Dr. and thought I would run this by you all since he will not be able to go to the Dr. until tomorrow.
I will take him to the ped. to have him checked out, then fax that info to his Intergrative Dr. She wants a list of all the ingredients in all the vitamins he is taking.
Does anyone know if a vitamin could cause this dizzy spell? The B12 is the last vit we introduced at 250mcg.
Thanks for any help, nervous Nellie is returning.
C.P.
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Hey all,
Just an FYI here for anyone wanting this info. I read that if you want to ween your child off of sugar that pears were very good to eat during that time. It is a slow steady rise in blood sugar levels.
C.P.
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Ditto... for us on the big tonsils, and the sleeping noises, and small size. Faith my son hardly ever gets sick too. Sometimes he can't even breath through his nose, and there is nothing wrong with him.
I remember once we were at the Dr. for my oldest, she had tonsilits, the Dr. looked in my sons throat just for the fun of it, and about fell off his chair. he asked if my son got sick a lot. I told him no, he was thinking my son should have his out, but couldn't justify it, so we went on our way. I think my son was 7 or 8 at that time.
C.P.
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Hey Patty,
I just noticed I was not helpful at all you were asking for recommendations.
Sorry about that.
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Hi trubiano,
Welcome, I'm not a PANDAS mom but did want to welcome you, and let you know you will feel so much better after being here.
C.P.
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Patty,
My son came up low sodium/potassium, in his hair analysis. His Dr.underlined adrenal as the cause. Her note said to eat more protein. He seems to have an impaired electrical balence within the cells. I don't understand how this all works but the ratio indicates a loss of potassium into the interstitial spaces as cells are distroyed.
He was also to eat less sugar and carbohydrates. I guess this pattern could be from his allergies, and stress.
I do limit the carbs, and the sugar is very small. (as honey) I'm counting on the raw milk to repair the cells.
He was not listed as extreme, but severe. She did not note any supps for this just more protein.
The tissue analysis has us to balence this with diet, supps, lifestyle and detoxification.
Hope that was helpful to you, I myself don't get some of this ratio stuff.
God Bless,
C.P.
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Hi Floridamom,
My son is 13, and last year I did notice tics were getting worse at the end of the year too.
It got even worse in Aug. Did you notice an increase in the fall as school was to begin?
I have not had my son do the IGg yet. He has had the scratch and Ige tests so far. I was going to do the IGg but have not because my son is doing so well, and we will have to pay for the test. Somewhere around $500-$1000. At this point I'm not sure we could get him any better with removing foods, as he looks and acts very normal now.
We did do the Clonidine Patch for about a month. At the time of his explosion his body was jumping around all over the place. The patch really helped calm his body , but did nothing for his vocals. After a month he was so calm we took him off the patch, and after alot of prayer his body never went back to being jumpy. In fact he does not motor tics, just vocal and some eye tics that really don't even show up all that often. His dad also has vocal and no motor tics. The Patch made him very tired, but less so once he had it on for a week or so. His handwriting went down the drain on the patch. He has very nice handwriting for a boy. I don't know if he was crabby because of the patch or because of the TS dx, but at that same time he was not our good boy. Could have been turning 12 too.
Hope that was helpful.
C.P.
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Hi Floridamom,
Welcome, I don't have anymore to add, but do think the natural calm is the best place to start.
Faith had some really good points, and I do believe natural raw foods is healing in itself.
I'll add your daughter to my prayers as this is a hard age to deal with being different.
C.P.
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Faith,
Thanks that was interesting.
Praying as OCD, I think the world could use more of that kind of OCD.
I don't know... is that like asking a beautiful girl not to look at herself in a mirror.
Hard but not impossible. Well... maybe that is impossible.
C.P.
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Dedee,
That is wonderful news. I'm so happy for you, what a blessing, PRAISE BE TO GOD.
You will be such a great help to future PANDAS' kids and the parents who come here looking for answers.
God Bless
C.P.
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Florida, WELCOME
I'm so sorry to hear your son is going through a spell. You sound like you know where to look as possable causes. I hope this is short live, and your son can enjoy his summer.
That is such great news about your daughter. May I ask how old is she?
Where did you get all your info on food colorings and stuff?
Please keep us posted if you see an improvement with the things you are taking away.
C.P.
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Kim,
I would be interested in that info. My son is/was high in Kynurenate & quinolinate. He is taking 100mg B6 and the magnesium support is to help with the Quinolinate. Also his Impaired tryptophan, has me wondering if the B6 is really the vit that has helped the most. Or at lease got him to a calm state for weeks now with no increase in tics.
Thanks,
C.P.
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Hi David,
My doctor had me wear a heart monitor for twenty four hour last month. During that period I had to note when I felt different heart rates. During that night my wife said I stopped breathing, so I noted it. She said some nights I stop breathing for 5 to 10 seconds and even longer.
When I spoke with my doctor this month to review the monitor results, he noted that I had over 3k skips in that 24hr period. He believes that I have sleep apnea do to the 3k skips.
I do have tourettes and have had them for over 30 years.
The information you spoke about is insteresting to me. I have an appointment next week for sleep apnea testing.
Thanks,
SP
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John,
Thanks, now that you say that I would notice he would try hard to hold his tics while we prayed. Well he had his head in his hand and that is what it looked like.
So I think you are right maybe he didn't like the feeling that he was causing the prayers to be not the same as they were in the past.
And Chemar you may be correct. When I was at my lowest I could not eat and lost 20 pounds in 4 months.
My son has puppy dog eyes and he would look at me during dinner with those eyes and say, "Mama please eat." I tried so hard to stuff food in my mouth, so he would not think it was he who was causing me not to eat.
That was very hard to do in front of a 12/13 year old, he was just too smart.
C.P.
Son having Dizzy spells
in Tourette Syndrome and Tics
Posted
Dr. called yesterday son's MRI is normal. PRAISE BE TO GOD!
I have been giving him sea salt on fruit and he did get a new pair of glasses this week. He has not had a dizzy spell yesterday or today so far.
I cut back on the vitamins and he has not ticced any more then normal. We started the weening off the risperdal about 5 weeks ago. He was on 1mg then 0.5mg now I would say it is 0.2mg. I'm not sure I can cut this pill any smaller, but he should be off it by the end of next week.
Since I can't pin point what was causing the dizzy spells, I was looking for advice on the vitamins and the risperdal, but not sure what I'm asking for. If anyone has any advice after reading and or remembering our sons progress... I would be most grateful.
C.P.