bmom

My husband also has some mild tics and that is why I ruled out PANDAS in the beginning. For what ever reason, I thought that it probably wasn't PANDAS due to that fact. Yet my son seems to have really followed more of the PANDAS path and so I am back to that. I spoke to Dr. Murphy's assistant and she said perhaps my husbands began as PANDAS as well. Good luck.

Darn it! I keep thinking that I will hear from Lenny and Cum Passes that they have stopped worrying! Something like oh gosh- I guess time has healed all my worrying and things are great now! Wishful thinking I just hope there is a day that I look back and go, wow, all that worrying was for nothing and all is fine. I thought hopefully now that a year has passed. Now I just worry about the 10 -12 years as my son is 9. Then I will worry about my daughter having the same problems as she is only 3! Ughhhh!!! I guess I just figure that they are a little a head of the game then I and I am hoping that I will settle into some sort of resolution with this soon. Thanks for your kind words Chemar.

Tlk, Just my two cents, but I don't think I would stop looking into the PANDAS stuff. Perhaps find a doctor that does not think titers are the main criteria. I think I would see if antibiotics would help his symptoms on a daily or weekly basis if you haven't tried this yet.

I am one that posts often with questions, yet I just wanted to make a different type post today. Today marks a year since my son broke out into many tics. I scoured over the internet and some how fell into this website. I spent many sleepless nights reading old posts. I was thankful and hung on to the success stories of the parents that figured out the answer to their childrens ticcing. There were many parents who just would quit posting and I often would think "what happened to their children?". I made a promise to myself and to God that if he would allow me to find the answer I would post that I had found success. Well I haven't quite figured out what my sons issues are, yet I am leaning to PANDAS. I just wanted all the newcomers to know that it does get better when you are in that dark time and your children can get better. I think the only reason I haven't done more testing, etc. with my son is because he is doing so well and I don't want to rock the boat. He is on Bonnie's vitamins and has some food restrictions- mainly reduced dairy, sugar, and organic when possible. All I could think when he was ticcing so much is what is this year going to be like? And he ticced pretty badly for 2-3 months then the rest of the year has been fine. A few single tics here and there, but nothing else major. I still constantly worry and I am working on that, yet I would so much rather me worrying than him ticcing. I just wanted to let you all know that it can get better and you can find success.

Kelly, Can you tell me what made you decide to do the antibiotic preventatively rather than just during flair ups? Is there a reason that this would be better?

Thanks for all of the great info Kelly. It does seem that he is very knowledgeable in the area as well.

I found a doctor that talks about treatments for PANDAS. I know that Dr. Murphy is a specialist in this area, yet I am wondering the treatments that she does. Does she use antibiotices, steroid bursts, or IVIG? Dr. Kovacevic talks about treatments for this in the form of antivbiotics and different things. For those that have seen Dr. Murphy did she talk about treatments such as these?

Thanks Kelly, I cant remember, are your sons on prophalatic antibiotic? I am thinking, since he did respond to the Pen V he could just do antibiotics when tics emerge, yet his doctor said only if it is strep, not viral. I am going to find a doctor who will work with me. I am just not sure he needs it prophalactic at this point. I would love to try it when I see tics though.

I am sorry to keep rehashing this as I have asked this before and I am still trying to figure it out with new info. Long story short and I am sorry to all who keep hearing it, Son breaks out into tics about 10 days or so after fever, sore throat, etc. Unfortunately I did not take him in as he hadn't had strep in many years and it was only a 1 and 1/2 day sickness. Many tics with great frequency. After many appontments 2 months later I read of PANDAS. tics were almost gone at that point. titres came back normal. Another small set of a tic when I began giving Benedryl for allergies. Stopped and it stopped. A couple of months later sore throat, frequent need to urinate. Took him in-strep and no bladder infection which I had them check due to need to urinate without actual production of urine. Went on Pen V and no tics began and urination stopped. Months later eye tic begins and 2 weeks in he has stomach flu and flu like symptoms where tics peak and then die down after about 1 and 1/2 weeks after illness. This week I notice a tic only here and there mostly when playing video game. I notice it on Sunday eve. Today, fever and illness. The only other times I have noticed is possibly a day of one tic here and there for a total of 3 times since this began a year ago without illness. Although once when he was three he had eye tics for about 3 days. I do not know if it corresponded with illness or not. I noticed that tv seems to make them worse when he is ill, yet when he is not he can attend movie theatres and things like that without a problem. My grandma had Rheumatic fever as a child and his dad has minor tics. Unsure if husband was PANDAS or not. My question I am trying to come to is does this seem to be more PANDAS and should I consider antibiotics or does it not seem to fall into PANDAS? He did have several bouts of strep at the age of 3 and they almost took out his tonsils. Until last year, I had not noticed strep again. He was 8. I know that it is often not clear cut, yet do you all think I am dealing with PANDAS and should go to Dr. Murphy or do you think it does not fit that category? Thanks all. He is on Bonnies supplements currently.

No, I dont except I have spoken with him several times on the phone and he said a few things, but that he would explain his research to me as it is somewhat complicated over the phone. I have asked him about the proteins and he said they boost the immune system.

Hi Faith, Yes, I have spoken with a Doctor who is a retired immunologist and DO that believes he can put it into remission. I am going to try to meet with him in the next couple of months to talk about what he believes is the cause and how to put it into remission. I dont know too much yet, and he lives about 8 hours away so I am going to try and meet with him as soon as I can. He is elderly and trying to write a book that involves over 30 years of research he says. I thought what I would do was give him Dr. Sharps info-phone and email- and see if he is willing to discuss his research with him as he seems to be working on that angle. Anyway, I don't know much, but I will let everyone know if I can make progress. What sparked my interest was that he said this is an immune system problem and it can affect the metabolic system. Hmmm- he could be onto something there.

Wow Kelly, Thanks for the great post. It sounds like you pulled it from my head as to what I have come to think. As far as the vaccine issue, I believe that the mercury and junk don't help the situation, but the main problem is the viruses themselves. For kids with immune system problems, tics or autism or whatever it may be, the vaccine my just be too much for them to handle. I just haven't figured out how to get around them so I am still working on that. I have spoken to my sons pediatrician about antibiotics during flares and he said no. How did you get your Dr. to agree? Did it require a specialist? Anyway, progress seems sooooo slow as far as the Doctors are involved. I have spoken to a doctor that claims he knows the cure. He said he spoke with the tourettes association long ago and told them that he had discovered it is an immune system problem that eventually can affect the metabolic system and involves antibodies attacking the brain. His "cure" are proteins that boost the immune system. It sounds pretty close to what could help and he is writing a book, yet it seems to be a slow process. You sound like you are so great about it all now and I am hoping to get there. Thanks for keeping us all posted and I am so glad that there are so many moms that seem to make great strides on this issue.

Nevermind, I just read below. Sorry to hear it hasn't helped.

Mom2three, I was just wondering if things have calmed down for your daughter? Did the antibiotic help?

Faith, Do you vaxinate? I am still debating this decision as I would love to not, but I don't know the process. Have you seen any increase in tics after a vaxination?

I am just curious if there is a test that can be done to check for Lyme disease, pneumonia, and any bacteria type stuff all in one or would you have to request each test individual?

My son has not done a protocol for this, yet I have read that many have benefited from Candida Clear by Now and some have used Threelac with success. Dr. Robbins may also want to prescribe something like Nystatin. I believe that many children accumulate yeast due to antibiotics. Was your son on a lot of antibiotics during his childhood?

I also want to add that I hope I did not add to the problem. It is true that you have been at this much longer and probably have much more of an acceptance of it all. I pray to God everyday to do all that I can to help my son and accept what I can't. I believe that he has definately accomplished that in your case and I am still on that path. Thank you for all that you have done to help the people on this board.

Thanks Chemar, I know the diagnosis is what it is. Believe me, when this all started, the year deadline always loomed in my head. It was just when I read that post that I realized I didn't dwell on that anymore. I have just come to believe that it is all the same to me-tic disorder vs. tourettes. What I have come to think in my head is that some children have a clear reason for their tics-such as Caryn's son where others may be so sensitive to so many things that they can not be completely eliminated, yet reduced greatly, even with such a thorough mother as yourself. Would that make sense? At least that is how I make sense of it. I often think about the children that could be helped with diet or something though that dont even know there is a cause. What if Caryn or someone else never figured out the cause? Where would there children be? I still somewhat have that elephant in the closet as I haven't exactly nailed down my sons issues. I am thinking it is PANDAS as he doesn't seem to have symptoms unless he is ill with a bug or the Benedryl time. Although I did notice a day of a mouth thing-wasn't quite sure. Yet, I was one of those moms that started everything at once and I am reluctant to stop anything so I don't know for sure. I cut out milk except for on cereal, yet he has had ice cream and milk and not reacted. Treated his allergies with NAET and air purifier. Went to allergy free soap and no chemical cleaners. ect, ect, could go on and on-lcd tv. I don't see any reason to go back to all of that stuff. Anyway, back to inherited vs. tic disorder. Yes my husband tics. Doesn't really have a vocal- Have noticed the occasional throat clearing yet we all do that and don't think it really is a tic. What I have come to wonder is could my son have inherited PANDAS or high aluminum or an intolerance to milk that presents itself in tics like my husband? We haven't really done any testing with my husband as he is reluctant and his don't bother him-although we have noticed a big help with chiropractor and he doesn't mind that. I hope I didn't offend anyone with the Tourette's diagnosis fear. I am one of those like Faith said that it is just all the shows that have portrayed it so bad. It does make sense to me more when you talk of the vocals as being more of a clear definition. My husband does not have that and my son did a throat clearing for about a week during his first explosion that I actually attributed to flax oil-it started when I started it and stopped when I stopped it. Yet that is it. I still put it in my head as all somewhat on a tic spectrum with transient on one end and tics with vocals continuous (ok some may call this Tourettets if they like) on the other. And all can be helped with many things implemented. Thank you for listening to my rambling as I am trying to figure it all out myself.

Chemar, My question is you say that there are things that set Tourettes apart from other tic disorders, could you tell me what those are? The reason I am asking is my husband has mild tics, and in Feb. my son -8 yrs at time had a major breakout of tics. Due to the fact that my husband had tics, I felt an overwhelming doom as I was sure we were destined for Tourettes- Im sorry, I was dreading the diagnosis. At the time, I ruled out PANDAS because of my husbands tics and not quite understanding it. Anyway, long story short, tics disappeared after 2 months and beginning Kids Calm. 2 small other episodes over the year-it will be a year ago in Feb. One was a quick week tic of eyes which stopped when I realized it could be the Benedryl I stopped it. other coincided with stomach flu. Initial symptoms began 10 days after what I now believe was probably strep throat untreated- 2 days of fever and sore throat. My point is, I now am considering PANDAS again as it would seem that it somehow fits it more. So I have been thinking could my husbands began as PANDAS or could children inherit the triggers of their parents the just as the other children have triggers? What is inherited Tourettes and how is it different than everyone else? I am now believing that the diagnosis is just a name- a name that they had to come up with to fit some type of behavior. I asked Dr. Murphy's assistant if my husband could have had PANDAS she said maybe it could have been related. My son had strep many times when he was 3 then not again until last year- intial onset and 2 months after he had confirmed strep. He began with frequent urination and sore throat. He was put on antibiotics on day 2 and no tics arose and frequent urination stopped. I guess I am trying to figure out his puzzle. Thanks for any info.

That is great that you got the antibiotic! That alone has sometimes helped a child. Did he prescribe all three allergy meds in one day? I would start each one slowly if so to see what is helping. My son actually had a reaction to antihistamine-I know, not what you want to hear. The other thing that some people have a reaction to is the EPA/DHA. You may want to start that sometime after the vitamins seperately so you can determine what is making a big difference. Glad you made some progress and in my humble opinion the antibiotic may be a biggie although some do not have it as helpful. Hope it is for your daughter!!!!!

Im sorry that you are going through this. I went through it around a year ago and within 2 months I had lost 15 pounds because I was so distraught. After going to UCLA for Tics and Tourettes and many more doctors, the thing that got the ball rolling was the Kids Calm. It sounds like you are already doing magnesium, is it citrate, taurate, or oxide? Oxide did not help my son at all. I just started my son on Bontech 1 1/2 weeks ago and I give it to him 3 seperate times a day as a feel it is better to break it up. with breakfast, after school, and bed. Just know this too will pass. Although my son is doing great, the thought of moving to Montana after this outbreak has crossed my mind many times-the simple life. Hang in there and pray for guidance. I did and it passed and I still pray everyday that God is guiding me. Believe me, I was never real religious, but I feel he has guided me. It may be hormones and I hope it passes quickly. I still have to question the strep though. Why everything at once. Did he do a throat culture? I have the email to Dr. Murphy at Shands who is a specialist in the PANDAS field-actually it is her assistant, but they have been very informational. I could private message her or you could google Dr. Tanya Murphy in Florida. Her assistant spoke with me for about a half an hour and they are the top in the PANDAS field. Perhaps it is viral, not strep. They could discuss this all with you-they did me. Good luck.

A food intolerance test shows different than an allergy test. My son has done the RAST and IGE which are allergy tests. The one that he has not done is the IGG which is an intolerance test. I am not sure if it shows MSG, colors, and the rest or just food. I know that probiotics are very good and I will probably start again down the road sometime.

You would think that Dr. Robbins may be a good resource for you to call as you just spent a bunch on money on tests there. Did you give him a call? Did he do an intolerance test on your son? I have to say that I was giving my son probiotics for awhile and was wondering if he was reacting to them although I think probably not, I stopped to be safe-slightly paranoid these days about new things.

The other thing I am unsure of- well I guess 2 things: I have my son on Bontech as I am still unsure of Pandas Vs. not so I am questioning if that is the best if he is PANDAS. The other is what I can do about the nasal issues as he seems to be stuffy so much. OK one more - I havent had him tested for Candida and it talks about itchy inner ear- he is constatly poking at his ear and he says it is itchy. I do an ear wash on him once a week! Should I have him tested? Thanks to all who has info.