Doctor in NC

[Klgriffin]

Can anyone recommend a doctor in NC for a child with tics? Everywhere I go strong medication is recommended. I would like to find someone who is willing to help explore options and help guide me in helping my son. I have read Natural Treatments for Tics and Tourette's and would love to find a doctor who is willing to help down a more natural path. I am so overwhelmed.

[Sheila]

Hi and welcome to the Forums. I understand your need for a doctor rather than trying to figure things out for yourself. It's really ideal if you can find the right person.

 

After reading the book, do you have any feeling for what you are looking for? Have you seen anything affecting the tics like foods or allergies? Are there any physical issues that you think might be involved?

Please drop a note back and let's see if we can think of the best type of field for your situation. Maybe you could let us know a little more about your child.

 

I think many Forum readers would relate to your feeling of being overwhelmed. It's so hard to look for answers while you are dealing with the symptoms in your child and your own emotional reaction to everything. You aren't alone, and we would love to try to help you.

[Klgriffin]

Thank you, Sheila for your help. My son is 12 yrs old and started with tics at the age of 3. Started with sniffling as if his nose was stuffy. His pediatrician sent us to an ENT doctor. The ENT could not find anything wrong but our son continued to have issues especially at night so his pediatrician put him on a steroid nasal spray...for 3 years! I questioned if this long use of a steroid spray was okay and was reassured it was. I feel horrible because now looking back I know that was a tic he was having. I took him off the spray still not realizing it was a tic but felt the spray was not helping. He eventually stopped the stuffy nose sniffling and began to blink a lot. My husband and I thought it was due to his vision or something irritating his eyes. Took him to an allergist...no allergies. Took him to have his eyes checked...20/20 vision. Took him to a vision therapist who said he did have 20/20 vision but had underlying problems with his eyes and recommended vision therapy...he took vision therapy for 7 months. I asked over and over again and even changed pediatricians in hopes to get an answer to what we now know were tics. The sniffling has come back once but what really got our attention was when he was 10 he started with eye blinks, face grimacing and then his neck would jerk. I searched and searched the internet and read about tics and tourettes. My husband and I took our son to a neurologist and I felt for once we had an answer and went in with high hopes we would get some answers. I remember that day clearly. I left holding back tears(did not want my son to see me upset) and was frustrated the doctor said yes he has tics but there is not anything we could do about it. I proudly had my list of vitamins I wondered if he could be lacking including Magnesium and was told none of it would work. I could try it but would be wasting my time. The pediatrician we were seeing was not helpful at all. His tics would come and go and we kept hoping they would be gone for good only to have them start back up at some point in the year. I finally found the book I mentioned in the above post and it was like a breath of fresh air. I read it from beginning to end in 2 days taking lots of notes. This was 2 years ago. I have extensive note taking of foods(date/times/brands) he has eaten, vitamins and brands, sleep habits, how much exercise he gets, tv/computer/video game use etc. and I feel I have pinpointed some of the causes. I am not one to change doctors a lot but I changed to a pediatrician my sister knows and she is wonderful. Willing to explore other options etc. I went in with what I felt could be the issue and she recommended Orap...ugh! But I have voiced not wanting to put my son on this type of medicine and it was still offered. Her intentions were meant well but I did not have it filled. He does not have any allergies...had him tested again recently. He did test low sensitivities to wheat, corn and peanuts. But can eat these foods and will not tic at all. (But I do wonder if they build up if he has too many without rotating) He gets 11 hours of sleep a night, he does have mild anxiety that creeps up time to time. His tics are mainly year round but they do stop for awhile and start back. They are more prominent from Oct.-Jan. He stopped with his tics 3 days ago but I noticed when his older cousin came over to see him last night and they played a video game that he started with eye blinks during the video game. I went back to my notes and there is a pattern of when he plays certain video games. I have taking him to a doctor who checked for PANDAS and other tests and he did show low serotonin as well as dopamine levels. But nothing was recommended to help these except the medicine Tenex which we tried for 2 weeks but he was a different child...not himself and lethargic. Took him off Tenex. He showed extremely low B6 as well as Vitamin D which we supplement. He takes cod liver oil, probiotics, magnesium taurate. So, we are trying to find a doctor that is knowledgeable of tics and is willing to sit down with the notes I have taken and help us figure out if I am giving him the correct vitamins/supplements etc. I truly feel there is an imbalance within his body but I cannot quite pinpoint it and would like to find someone who is not wanting to resort to strong medication as the first or second advice. Any help or advice is greatly appreciated. I feel I am so close to finding the answer but so far away. Thank you for taking time to ready this long post:)

[Klgriffin]

Thank you, Sheila for your help. My son is 12 yrs old and started with tics at the age of 3. Started with sniffling as if his nose was stuffy. His pediatrician sent us to an ENT doctor. The ENT could not find anything wrong but our son continued to have issues especially at night so his pediatrician put him on a steroid nasal spray...for 3 years! I questioned if this long use of a steroid spray was okay and was reassured it was. I feel horrible because now looking back I know that was a tic he was having. I took him off the spray still not realizing it was a tic but felt the spray was not helping. He eventually stopped the stuffy nose sniffling and began to blink a lot. My husband and I thought it was due to his vision or something irritating his eyes. Took him to an allergist...no allergies. Took him to have his eyes checked...20/20 vision. Took him to a vision therapist who said he did have 20/20 vision but had underlying problems with his eyes and recommended vision therapy...he took vision therapy for 7 months. I asked over and over again and even changed pediatricians in hopes to get an answer to what we now know were tics. The sniffling has come back once but what really got our attention was when he was 10 he started with eye blinks, face grimacing and then his neck would jerk. I searched and searched the internet and read about tics and tourettes. My husband and I took our son to a neurologist and I felt for once we had an answer and went in with high hopes we would get some answers. I remember that day clearly. I left holding back tears(did not want my son to see me upset) and was frustrated the doctor said yes he has tics but there is not anything we could do about it. I proudly had my list of vitamins I wondered if he could be lacking including Magnesium and was told none of it would work. I could try it but would be wasting my time. The pediatrician we were seeing was not helpful at all. His tics would come and go and we kept hoping they would be gone for good only to have them start back up at some point in the year. I finally found the book I mentioned in the above post and it was like a breath of fresh air. I read it from beginning to end in 2 days taking lots of notes. This was 2 years ago. I have extensive note taking of foods(date/times/brands) he has eaten, vitamins and brands, sleep habits, how much exercise he gets, tv/computer/video game use etc. and I feel I have pinpointed some of the causes. I am not one to change doctors a lot but I changed to a pediatrician my sister knows and she is wonderful. Willing to explore other options etc. I went in with what I felt could be the issue and she recommended Orap...ugh! But I have voiced not wanting to put my son on this type of medicine and it was still offered. Her intentions were meant well but I did not have it filled. He does not have any allergies...had him tested again recently. He did test low sensitivities to wheat, corn and peanuts. But can eat these foods and will not tic at all. (But I do wonder if they build up if he has too many without rotating) He gets 11 hours of sleep a night, he does have mild anxiety that creeps up time to time. His tics are mainly year round but they do stop for awhile and start back. They are more prominent from Oct.-Jan. He stopped with his tics 3 days ago but I noticed when his older cousin came over to see him last night and they played a video game that he started with eye blinks during the video game. I went back to my notes and there is a pattern of when he plays certain video games. I have taking him to a doctor who checked for PANDAS and other tests and he did show low serotonin as well as dopamine levels. But nothing was recommended to help these except the medicine Tenex which we tried for 2 weeks but he was a different child...not himself and lethargic. Took him off Tenex. He showed extremely low B6 as well as Vitamin D which we supplement. He takes cod liver oil, probiotics, magnesium taurate. So, we are trying to find a doctor that is knowledgeable of tics and is willing to sit down with the notes I have taken and help us figure out if I am giving him the correct vitamins/supplements etc. I truly feel there is an imbalance within his body but I cannot quite pinpoint it and would like to find someone who is not wanting to resort to strong medication as the first or second advice. Any help or advice is greatly appreciated. I feel I am so close to finding the answer but so far away. Thank you for taking time to ready this long post:)

One more thing I have noticed...my son can be under a stressful situation and will not tic and then a month later be in a similar stressful situation and will tic like crazy. This is why I wonder if he has an imbalance in vitamin/minerals being absorbed one time and not another. Also, it may say sound strange but he can sit down to eat and tics every time. It is like he is excited about what we are eating and before his fork hits his mouth he tics. Have you ever heard of this before??

[shutterbug72]

Hello Klgriffin

We also live in NC and are looking for a doctor with better experience with tics and tourettes. Our 10 year old son started with constantly clearing his throat 2-3 years ago. Since then he has developed 10-12 different tics that are becoming worse. I was concerned that he may be having seizures as well so we took him to a neurologist last week. Long story short, no help, no answers. Duke is the only place near us that could possibly help but when contacting them we were told they do accept Cigna but Duke is not attached to ours. ????

Please let me know if you do find a doctor. I will as well.

[Sheila]

Hi to shutterbug72 and klgriffin,

 

I'm really sorry for being so long to get to this. I was out of town for several weeks and got way behind on things.

 

I appreciated the thorough description of your son's situation, lkgriffin. You've made some good efforts so far, I think it would make sense to consider seeing an environmental physician. Unfortunately it is not always easy to locate doctors who do the types of approaches described in the book Natural Treatments for Tics and Tourettes, which you said you read.

 

There's one physician listed on the website for the American Academy of Environmental Medicine who does the type of testing and treatment that has been found helpful for some Tourette patients: http://www.triangleent.com/ You might want to consider Dr. Taylor. I don't know of him personally.

 

I note that on his website he discusses 3 types of approaches to allergies. If he brings up LDA, you could let him know that he could double check with Dr. Butch Shrader, but the last I heard it was not necessarily recommended for tourette's.

 

I'm not suggesting that your boy absolutely has allergies, since you said two different tests do not support this. But I wonder if there are as yet some unrecognized sensitivities. And whether he has been thoroughly tested for mold sensitivity.

 

Also since he was found to have low sensitivities to wheat corn and peanuts, you might want to take him off of those for a few weeks and see what you find. You could do one at a time, as is described with an elimination diet (that's in the book). Does he eat a lot of peanut related foods? That might be the easiest place to start since corn and wheat are in so many food items.

 

Dr. Taylor might also have a different method that he uses for testing for food sensitivities versus what you have had done so far.

 

You didn't mention in your post whether you have eliminated scented products and chemicals from your home. (?)

 

Shutterbug72, please let us know if you have found a helpful doctor in the meantime. I notice that Dr. Taylor does accept Cigna, of that is any help. How is your son doing now?