In need of guidance

[Debbie1]

Hello everyone,

 

I have posted only once on this forum before, but have been reading the boards almost daily since I found this forum a few weeks ago. Although I have been dealing with my children's tics for a few years and googled "tic disorders" and "OCD" many times, I only found this site recently after googling "tics and diet". Thank you to all of those people who spend so much time offering support and guidance. It has truly been a source of hope.

 

Here is a bit of my history:

 

I have two children with tics. The first was diagnosed three years ago first by my pediatrician and then by an excellent neurologist who sees many children with tics. She was put on medication to manage her condition since it was clearly interfering with her ability to concentrate in school. She responded well to the medication and had no visible side effects. We had no idea that there were other options - we certainly would have pursued them. We are not in favor of unneccesarily medicating our child.

 

I have another child that was diagnosed with tics and OCD about one year ago, although we saw signs earlier. He was also put on medication but has recently complained of many side effects including headaches, blurred vision, sleepiness. We did not want to increase his dosage for fear that his side effects would worsen. It was heart breaking to see him complain daily about not feeling well and hear his teachers say that he is having difficulty concentrating at school. That is when I began my search that put me here.

 

Since reading Sheila's book and finding this forum, I have taken my son off of preservatives, artificial flavors, colors, and MSG and looked for a DAN doctor. At a recent appointment with my neurologist I asked him about dietary changes. He suggested reducing sugar intake to help with the OCD. He also gave me the name of a nurse practictioner in a holistic medicine practice(who happens to be on the DAN list) who one of his patients highly recommends. When I contacted the nurse, she said she sees several patients with tics/OCD and when she can identify a nutritional deficiency, food sensitivity, etc., the response is remarkable. I do not think she gets into metal detox (although I am not 100% sure).

 

Because I am still partial to MDs (and in search of someone who might actually take insurance!), I next contacted an environmental medicine doctor who seems to be pretty well known in the DAN community. I was quite taken aback by the conversation with his office - He sees just a handful of children with tic disorders (his specialty is autism) and he usually begins with MB12 treatment even before extensive testing is complete. He sends patients home with a kit to bring to a lab to have food sensitivity tested and then results are sent to his office for analysis. Regarding detoxification, he said that if toxic substances have been in the body for a long time or in high doses, then brain damage may be permanent even after treatment. BRAIN DAMAGE??? This is where I was taken aback! I my now several years of dealing with tics no one has ever said my child may be brain damaged! My neurologiost actually expects my children to grow out of this condition in their teens!

 

I am now unsure which road to take. Thank you to all who took the time to read this long post and who all who take the time to repond with guidance. As you all know, this is an incredibly challenging time for us.

 

Debbie

[faith]

Hello Debbie,

I'm pretty sure the person you spoke to was probably speaking more about autism, not tics/ocd. If this doctor only sees a handful of patients with tics, are they tourettes patients? Or autistic patients with tics? I am getting from that, that detoxification regarding heavy metals is what he was referring to? Maybe they are suggesing that autustic kids who are treated early for chelation of heavy metals have the best chance of responding to that treatment, as opposed to an older child. This is usually the concensus among the autism community, in that the younger the child, the better they will respond to treatments.

 

If you were speaking to the receptionist or even an assistant, I would take that with a grain of salt. If you spoke directly to the doctor, I would call back or e-mail them to clarify this statement. I can pretty well assure you that tourettes is not a condition that involves brain damage of any kind. But I'm pretty sure those more knowledgeable than me will be along any minute now!

 

I can tell you that a DAN doctor will probably use the same protocol as they do with autistic patients. That has pretty much been the case with us. The MB12 that you mentioned is something we have been doing through our DAN for about a year now. Does it help with tics, I don't really think directly, but my son was shown to have a problem with methylating B12 and folic acid, so this is something we opted to try to see if had any beneficial effects. I pretty much still deal with tics, and I am more inclined to believe the diet is much more helpful.

 

From what you describe about your options, I would go with the holistic doctor for a consultation visit and take it from there. It is good that you at least have a recommendation. The first visit even if out of pocket (which I'm sure it will be) will be less expensive, as DAN doctors usually chare about $750 (at least here in NY) for the initial consultation. In our case, the DAN we went to is an allergist, so we went in as an allergy patient, as my son is not autistic, and so the visits are covered, as was allergy testing.

 

Have you done anything so far in the way of dietary? How are things presently? Do the children still tic or have ocd behavior while on the meds? How old are they?

 

Faith

[Chemar]

Hi Debbie

 

glad you are asking questions!

 

 

if this doc is not very experienced in treating tics, then perhaps it may be wise to keep looking

 

where severe havy metal toxicity can lead to all kinds of problems, yet I do find it rather off putting that a physician would say something so insensitive to the parent of a patient he has never even seen or had tested

 

also

where VitB12 really is a "wonder vitamin" in so many ways, nevertheless some people do *not* tolerate it well for a number of reasons and IMHO should not be supplemented with it until it is determined that they require and/or can tolerate it

 

I know you mentioned feeling most comfortable with MDs, but DOs have the same qualifications and training and do tend to have a more holistic approach, yet are covered by most insurance, so you may want to consider one of them, again ensuring before making an appt that they have experience with tic disorders

[lurker]

Debbie,

 

From reading other people's posts, it seems many of us have had the opposite experience regarding doctors. I can certainly see why you prefer M.D.s. Your neurologist sounds very enlightened and open-minded. Since you asked for my opinion, here it is: Run, don't walk, to the Holistic nurse practitioner. Your NEUROLOGIST recommended him/her. I have to assume that his patient's referral would be meaningless to him if he had not observed some improvement firsthand.

 

As far as the other DAN doctor, they are not all created equal either. I would trust your instinct and steer clear of this one. It may just be that he is more interested in treating autism cases.

 

Tami

[Debbie1]

Faith,

 

Thanks for the reply. My daughter is almost 11 and is doing great. She has been virtually tic free on her medication. She still has a mild arm jerk but only at bedtime. Just recently an eye twitch resurfaced. This sometimes happens when she outgrows her dose, but rather than increasing her, we wanted to explore the allergy/diet connection. As of yesterday, I convinced her to try a week without MSG, preservatives, food coloring, etc. Of course it is too early to tell. She was allergic to eggs when she was younger (pre-tics) and had terrible eczema until we eliminated them. We thought she outgrew this, but maybe not? Part of the problem in identifying her allergies is that my children fall into the small percentage of kids that never test positive to skin or RAST testing.

 

My son is 6 and is not doing as well. He has both tics and OCD while on his medication, though not to the same degree as before. It is possible we have not yet found the optimal combination or dose. He experienced side effects from the medicine - he complained of frequent headaches, blurred vision, dizziness. We are not sure to what degree he was actually experienceing these symptoms - he is a child who has a history of always complaining about something, but with a new medication, we have to take it seriously. The neurologist is comfortable at this point with an increase as his complaining seems to have subsided, but we would like to hold off while we explore alternatives. We eliminated artificial ingredients at the same time we last increased his dose. His focus and concentration have definately improved, but it is hard to tell which helped.

 

I also live in the NY area. If there is anyone you can recommend that has been helpful to you, I would greatly appreciate it (perhaps through a PM if you are more comfortable).

 

Tami and Chemar - thank you for your input. I hope to respond to you shortly. Right now I have to go pick up the kids.

 

Debbie

[michele]

Debbie,

I was just wondering if you had posted before as to the medicine your son and daughter are currently taking? My 6 year old son's tics and OCD have currently subsided on Omnisepf however the ADHD seems to be getting worse with age. At this point we are working with a neurologist and the teacher. I was wondering if you use ADHD meds and what type you are using? If so what are the side effects? My son was negative to the IGG tests too. However the DAN still wanted him GFCF diet and to avoid additives.

 

Michele

Faith,

 

Thanks for the reply. My daughter is almost 11 and is doing great. She has been virtually tic free on her medication. She still has a mild arm jerk but only at bedtime. Just recently an eye twitch resurfaced. This sometimes happens when she outgrows her dose, but rather than increasing her, we wanted to explore the allergy/diet connection. As of yesterday, I convinced her to try a week without MSG, preservatives, food coloring, etc. Of course it is too early to tell. She was allergic to eggs when she was younger (pre-tics) and had terrible eczema until we eliminated them. We thought she outgrew this, but maybe not? Part of the problem in identifying her allergies is that my children fall into the small percentage of kids that never test positive to skin or RAST testing.

 

My son is 6 and is not doing as well. He has both tics and OCD while on his medication, though not to the same degree as before. It is possible we have not yet found the optimal combination or dose. He experienced side effects from the medicine - he complained of frequent headaches, blurred vision, dizziness. We are not sure to what degree he was actually experienceing these symptoms - he is a child who has a history of always complaining about something, but with a new medication, we have to take it seriously. The neurologist is comfortable at this point with an increase as his complaining seems to have subsided, but we would like to hold off while we explore alternatives. We eliminated artificial ingredients at the same time we last increased his dose. His focus and concentration have definately improved, but it is hard to tell which helped.

 

I also live in the NY area. If there is anyone you can recommend that has been helpful to you, I would greatly appreciate it (perhaps through a PM if you are more comfortable).

 

Tami and Chemar - thank you for your input. I hope to respond to you shortly. Right now I have to go pick up the kids.

 

Debbie

[Debbie1]

Michele,

 

My daughter is on Klonopin for tics (she does not have any accompanying disorders). She tried others first, but they either didn't seem to work or the effect wore off within a short time. Side effects are usually drowsiness, although my daughter does not experience this even with increases in dose.

 

My son is on Klonopin as well. He also does not experience the sleepiness, but it has not worked as well to control the OCD so the doctor started Zoloft recently. He is coming down on the Klonopin dose at the same time. Zoloft (anti-depressant used to treat OCD) seems to have had some positive effect. Side effects are sometimes insomnia and weight gain. My son has not experinced either, but as I said in a previous post, did complain of headaches, blurred vision and dizziness. These seem to have subsided. We are hesitant to increase the dose now to get improved effectiveness because it will mask symptoms we are now going to try to address through a more holistic approach.

 

Michele, let me say that I might not have taken the medicine route if I had known there was another way to treat tics. We would really like to try to reduce/eliminate the medication if we can find a trigger and eliminate it.

 

Gla to hear your son's tics and OCD have subsided eventhough you are struggling with ADHD. Is the GFCF diet working for him?

[Debbie1]

Tami and Chemar - Thanks for your advice. I have not yet been able to find a DO in my area that works with tics, although I will keep looking. In the meantime, I just made an appointment with the holistic nurse practitioner.