New member: Where to go from here?

[nemom]

Hello! Thank you for taking the time to read this post- it's my first!

 

Here is a quick background on our situation-

 

7 year old son who started showing signs of anxiety and OCD at the beginning of the school year. Came out of no where. My husband does suffer from mild anxiety.

Started with an eye tic that has come and gone twice. Usually lasts about a week. No family history of tics. Was told it was most likely a transient tic.

Currently dealing with a head/neck tic . Started very mild, but grew into vigorous shakes, usually 3-4 at a time. He was shaking on average 20 times per minute over the weekend. Things have started to die down quite a bit. Now that I think of it, he probably has a couple other minor tics too that just aren't as noticeable.

He has been working with a local psychologist for several months to help with the OCD/anxiety and she has been amazing. Lots of progress here, but still a long road ahead.

Taking Kids Natural Calm multi with magnesium on and off for several months. I have become diligent in giving this to him everyday since last week.

On Friday we had a blood test and ruled out PANDAS. He has never had strep throat and has always been pretty healthy. He was diagnosed with very mild asthma at around 4 years. He only had a couple attacks and only when he was sick. He has not shown any signs of asthma for well over a year.

No allergies that we know of.

 

Here's what I have done so far-

 

I have an appointment with our pediatrician tomorrow. He typically takes a pretty natural approach to things so I am interested in his opinion moving forward. I do want to keep him in the loop, but I don't want to just "wait and see." He has already tested my son for possible neurological issues in his office and we have found nothing. I would prefer not to see a neurologist at this time.

My son has a appointment with my chiropractor next week. This will be his first visit.

I already use natural cleaners and very little chemicals in the house. I am researching how to take this a step further using advice from the book.

 

My question to all of you who have been on this journey for awhile...

 

Where should I go from here? I feel like the next logical step would be to look into a food sensitivity or allergy. Should I get a referral for a pediatric allergist or would it be better to start with a naturopath or environmental doctor? I am also interested in nutritional supplements. Should I start ruling out certain food groups on my own, starting with dairy and wheat before having tests?

Can anyone recommend a practice or doctor in our area? We live in New Hampshire, but we have close access to Massachusetts and Maine.

 

Thank you for your advice. It will be greatly appreciated!!!

[Cj60]

Hi,

 

We found diet to be key in how we addressed our son's tics. If you were to search this forum for "diet" or even "elimination diet," you'd find lots of information.

 

While some people choose to do their own elimination diets, and we did, too, with a couple of key offenders (dairy, artificial colors and flavors, preservatives, high fructose corn syrup), the diet we have followed for 1.5 years now was arrived at with the help of an environmental medicine practice. We found the practice through the "Finding Medical Help" link on this forum. We have much preferred the alternative medical attention my son has received for a number of reasons. But basically, the pediatricians and other drs. we had used prior to needing to expand our approach regarding health issues were definitely not prone to looking outside the box. It sounds like your pediatrician isn't quite as limited in some things as our's is.

 

My son was tested for food sensitivities and based on the tests we were guided in eliminating some foods and implementing a rotation diet for some other lesser offenders. Over time, we identified some triggers that weren't identified through the tests but rather through our close observation.

 

We followed the diet very striclty for a long time, and now lax up only on ocassion with some items. While it might be found that the removal of some triggers may quickly alleviate problems, if you want to see if a diet is going to have a positive effect long term, it takes patience.

 

In addition to diet, we supplement a clean, potent multivitamin, again, religiously. A couple of other supplements round out things for us, but I think they are pretty particlar to my son. The diet and the multivitamin have had the greatest impact on our son's tics.

 

Lots of other stuff too that can help. I'm sure you'll find lots of help here.

 

One word of advice you're certain to hear is don't discount pandas simply because of one test. And don't stop looking for other answers. Lyme and mold also are linked to tics.

 

Good luck,

 

Chris

[cory2605]

Hello! Thank you for taking the time to read this post- it's my first!

 

Here is a quick background on our situation-

 

7 year old son who started showing signs of anxiety and OCD at the beginning of the school year. Came out of no where. My husband does suffer from mild anxiety.

Started with an eye tic that has come and gone twice. Usually lasts about a week. No family history of tics. Was told it was most likely a transient tic.

Currently dealing with a head/neck tic . Started very mild, but grew into vigorous shakes, usually 3-4 at a time. He was shaking on average 20 times per minute over the weekend. Things have started to die down quite a bit. Now that I think of it, he probably has a couple other minor tics too that just aren't as noticeable.

He has been working with a local psychologist for several months to help with the OCD/anxiety and she has been amazing. Lots of progress here, but still a long road ahead.

Taking Kids Natural Calm multi with magnesium on and off for several months. I have become diligent in giving this to him everyday since last week.

On Friday we had a blood test and ruled out PANDAS. He has never had strep throat and has always been pretty healthy. He was diagnosed with very mild asthma at around 4 years. He only had a couple attacks and only when he was sick. He has not shown any signs of asthma for well over a year.

No allergies that we know of.

 

Here's what I have done so far-

 

I have an appointment with our pediatrician tomorrow. He typically takes a pretty natural approach to things so I am interested in his opinion moving forward. I do want to keep him in the loop, but I don't want to just "wait and see." He has already tested my son for possible neurological issues in his office and we have found nothing. I would prefer not to see a neurologist at this time.

My son has a appointment with my chiropractor next week. This will be his first visit.

I already use natural cleaners and very little chemicals in the house. I am researching how to take this a step further using advice from the book.

 

My question to all of you who have been on this journey for awhile...

 

Where should I go from here? I feel like the next logical step would be to look into a food sensitivity or allergy. Should I get a referral for a pediatric allergist or would it be better to start with a naturopath or environmental doctor? I am also interested in nutritional supplements. Should I start ruling out certain food groups on my own, starting with dairy and wheat before having tests?

Can anyone recommend a practice or doctor in our area? We live in New Hampshire, but we have close access to Massachusetts and Maine.

 

Thank you for your advice. It will be greatly appreciated!!!

 

 

Hi,

 

You seem like you are off to a great start with the concern about a good clean diet, interest in supplements and getting your son in to see a good Psychologist. The Psychologist will give him tools for life regardless of what is causing his tics/OCD like symptoms.

 

My son also started his tics/OCD at the age of 7. It was sometime in February I believe. I wondered for awhile if it wasn't brought on by the flu vaccine he had a few weeks earlier for awhile. Still a bit curious but moving forward. We tried eliminating dairy which is a big trigger for many kids but it didn't make a difference for my son. We have found he is gluten-sensitive and really spaces out when he's had any time of gluten. It's so obvious now that I can tell when I pick him up from school if they've had a birthday party or some other type of celebration where cupcakes, pizza, etc. were served!

 

I agree with Cj60 as far as PANDAs. Particularly since he displays some OCD symptoms and the fact that theses symptoms (tics and OCD) seem to have come out of nowhere. You'll hear some parents on the forum compare the OCD symptoms to almost a 'tic' in itselfe. My son hides his OCD quite well particularly when they are manifesting as intrusive thoughts but other times it is obvious to me as his mother that he is obsessing about something and can't let go of it.

 

I will pray for you, your family and your son as well as everyone on this site that is in the middle of this tremendous challenge.

 

GOD BLESS!

 

Trish

[Chemar]

Hi and welcome

 

in addition to what the others have mentioned, I also want to point out that sudden onset tics/OCD can also be caused by infections other than strep ie PITAND not just PANDAS

 

My son has genetically inherited Tourette Syndrome, but we have always known there is a PITAND component to his illness, even though a PANDAS expert felt it was not strep induced. So do check into the other infectious agents that can cause these symptoms as well.

 

And the more I learn about some of my son's other conditions, which include Crohn's disease, the more convinced I become that many of our kids have compromised immune systems, likely exacerbated by the onslaught of vaccinations they are subjected to when tiny!!

 

Nomatter what the cause, cleaning up diet, removing allergens, toxins etc is a big help.

 

We have some helpful threads pinned to the top of this forum which are worth reading too

[minimaxwell]

First of all I am so sorry you are going through this. My DD17 has been suffering for 11 years.The top doctors in Boston missed the PANS diagnoses. I would urge you to go see Dr. Trifiletti in NJ. My daughter was "tested " several time for PANDAS (strep) Turns out Mycoplasma is her trigger.

 

BTW, we just had lVlG with Dr. K in Chicago. He believes almost all TS can benefit from lVlG and has had huge success.

[Chemar]

BTW, we just had lVlG with Dr. K in Chicago. He believes almost all TS can benefit from lVlG and has had huge success.

 

Can you post any references or statistics to back up that rather broad statement?

 

After all the years of seeing people come and go on these forums....one thing that really stands out is there is no such thing as one treatment (or doctor) fits all.

[minimaxwell]

These are not my statistical finding. I am just stating what was told to us by Dr. K. I do not think there is a one treatment/Dr. who can fix all.

Dr. K told us his success rate is 80-85% with lVlG, again I have no data to back up his claim. but with those odds and the fact that nothing else has seemed to work we decided to go for the lVlG. I have met several families that have been thrilled with results their childrenhave had with Dr. K. That being said IMHO Dr. T understands the bloodwork more than anyone.

BTW, we just had lVlG with Dr. K in Chicago. He believes almost all TS can benefit from lVlG and has had huge success.

 

Can you post any references or statistics to back up that rather broad statement?

 

After all the years of seeing people come and go on these forums....one thing that really stands out is there is no such thing as one treatment (or doctor) fits all.

[Chemar]

so are you suggesting Dr K is claiming that he has a 80-85% success rate in CURING genetic TS with IVIG?

 

I apologize for being pedantic on this, but claims like that really do need to be substantiated, as they can hold out false hope (and cost $$) for people who tic for very different reasons than IVIG can help

 

We've had many claims of THE cure here...and people have run off and tried things at great expense only to be disappointed....most recently the dentists who suggested that all one needed to "cure" TS was a mouth device to correct TMJ

 

Obviously yes, there are people who may benefit greatly and even be "cured" by these treatments because for them, the underlying cause of what was diagnosed as TS is something different that just a genetic disposition to dopaminergic malfunction in the basal ganglia resulting in involuntary motor or vocal tics, which is what TS predominantly is.

 

I know that there are likely many people with genetic TS who are also PANDAS or PITAND (or PANS) and that yes, they may likely see success with IVIG. But the vast majority of genetic TS cases have absolutely no co-morbid conditions like OCD and all they have are simple tics, in many cases so mild that they never require any form of treatment ever.

[minimaxwell]

From what I remember Dr K saying it is HIS opinion that most TS is infection based and a very small percentage is true TS. His claims of success with lVlG was not for genetic TS. I have clearly offended you and for that I apologize. I certainly don't want to be pushing snake oil. I only hope to help another family so that they do not go thru the ###### of 11 years being misdiagnosed as we have .

 

been.

so are you suggesting Dr K is claiming that he has a 80-85% success rate in CURING genetic TS with IVIG?

 

I apologize for being pedantic on this, but claims like that really do need to be substantiated, as they can hold out false hope (and cost $) for people who tic for very different reasons than IVIG can help

 

We've had many claims of THE cure here...and people have run off and tried things at great expense only to be disappointed....most recently the dentists who suggested that all one needed to "cure" TS was a mouth device to correct TMJ

 

Obviously yes, there are people who may benefit greatly and even be "cured" by these treatments because for them, the underlying cause of what was diagnosed as TS is something different that just a genetic disposition to dopaminergic malfunction in the basal ganglia resulting in involuntary motor or vocal tics, which is what TS predominantly is.

 

I know that there are likely many people with genetic TS who are also PANDAS or PITAND (or PANS) and that yes, they may likely see success with IVIG. But the vast majority of genetic TS cases have absolutely no co-morbid conditions like OCD and all they have are simple tics, in many cases so mild that they never require any form of treatment ever.

[Chemar]

Dont worry minimaxwell...you have not offended me

 

I have just been here long enough, and been on this journey with my son's health for so long too...that I *always* caution when I hear *any* doctor making these kinds of claims..... where I have absolutely no doubt that there are many misdiagnosed with TS who in fact do have infection based illness, still there are others who do not....so it is essential IMHO to present a balanced view, and not hold out false hope of "cures for all" with one treatment.... as that simply is not so, no matter which doctor/dentist etc claims it.

I have seen so many parents pass by here whose kids have been helped by MANY different and varied treatments.

 

Letting people know about the possibility of an infection source is important though, as most conventional doctors never mention it to them! and yes, many waste valuable time with misdiagnosis when their kids could be on the path to healing sooner.

[MichaelTampa]

Maybe he has a success rate like that for cases he treats, but there is a screening process where some percentage are not given the treatment (based on his thinking that those would not be helped).