a lot freaked out

[Megaman]

Hi there,

 

I have looked through lots of the forums here and they have been helpful so far. I still feel the need to get what is happening with us out here and see what people say.

 

About 8-9 months ago, our son started moving his neck in a way that made us think he had some real tightness where his occiput meets his first vertebrae. We didn't pay much attention to it other than trying to treat it a bit. For some background on us (Mom and Dad). Mom is a PT and Dad is a Massage Therapist but we only do a form of therapy called CranioSacral Therapy. So we were treating him and it seemed to help a bit.

 

Fast forward to the past 3 months and he has developed a full on motor tic in his neck that also includes a vocal tic. Not a big vocal tic but little grunts here and there. Almost always when his neck is bad.

 

Initially we were thinking TS, then a friend suggested PANDAS. I have been reading and reading. To the point where I am confused.

 

Here is what we have done so far.

 

1. Lots of CranioSacral. Mobilizing the Dural Tube certainly helps but the tics do not go away totally.

 

We stopped treating for a bit and the tics came back..a lot. They also involve a squinting of the eyes.

 

2. Mom got in and treated his Basil Ganglia (BG) directly and had him connect his immune system to the BG. The difference was immediate. The next day and up to about 2 days there were no tics in any way, during the day. they have started up again during the day..but are very very minor.

 

Interestingly they seem to remain at night. As we are relaxing and reading stories, his neck tic is happening but it also seems to involve his body as well. Lots of flopping around.

 

The confusion is around treatment. It seems that people can have a positive test and be asymptomatic or have a negative test and have symptoms. I have also read that Antibiotics really help. I also read that they help until the next strep infection. Part of me wonders if the Antibiotics (A/^_^ are working, or if because things seems to be episodic in nature maybe it is a lull. With the A/B's, do they get rid of the symptoms immediately?

 

How do we know when to get a test done? Should we start with the rapid response testing or go for a full culture?

 

We would love to treat naturally but if A/B's are the way to go, there is no question we will do that.

 

Any input with Lauracedin or colloidal silver?

 

Love some help.

[MomWithOCDSon]

Hi, and welcome.

 

Yes, PANDAS and PITANDS serves up a very diverse array of people, symptoms and treatments, so it can be a lot to digest and confusing, too. Other than the two tics, have you seen any other behaviors/symptoms in your son? How old is he? Can you peg any exposure to strep or another illness preceding the first appearance of the tics?

 

You could begin with a throat culture (the rapid response won't do any harm, but don't forego the full culture, whatever the results of the rapid test reveal (or fail to reveal). The reality may be, however, that both tests could come back negative but your son may still have an underlying infectious trigger and/or an autoimmune issue. My son was one of those who was entirely asymptomatic for strep, so we didn't know he was reacting to an infection until we had blood tests taken for the ASO titers and AntiDnase. As you've probably seen here on the boards, though, even those tests are not considered fully diagnostic because other agents (like Myco P) are thought to be part of the picture for some kids, too.

 

There is a broad array of immune testing that can be done, but starting with the basic strep test would seem to be clearest place to start.

 

We've not tried Lauracedin or colloidal silver; we went with the old-fashioned antibiotics, and they have helped us trememdously; however, my DS's PANDAS behaviors are almost entirely OCD in nature, rather than tics. We do use a full array of natural supplements in addition to the abx in an effort to control inflammation and boost immunity overall (tumeric, quercitin, D3, B-complex, magnesium, NAC, inositol, probiotics, etc.).

 

I have a remaining question for you regarding this statement you made:

 

2. Mom got in and treated his Basil Ganglia (BG) directly and had him connect his immune system to the BG. The difference was immediate. The next day and up to about 2 days there were no tics in any way, during the day. they have started up again during the day..but are very very minor.

I am really curious about what you mean by this treatment. You said Mom is a PT, which is Physical Therapist, right? What is the discipline/technique that provides for this BG/immune system "connection" and is it a common technique/methodology among practitioners? Is it a manipulation? Is CranioSacral therapy anything like NUCCA? Perhaps there is yet another therapy some of our families should explore!

 

Thanks!

[thereishope]

Welcome. In regards to antibiotics, the time frame varies whne you start to see improvement. For some, it's immediate, other (my son), it's a few days into antibiotics, others maybe a week or so. You do not not need to see full recovery in order to say the antibiotics are working. Recovery actually takes a long time. With my child, I saw the symptoms platuea and stop worsening (to me, that's improvement), or I slowly saw some issues go away.

 

A problem with antibiotics is finding the one that will work for your child. So, if you do not see improvement, it's not necessarily that it's not PANDAS or PITAND, but that it's not the correct antibiotic for that child. A good number of doctors will still give amoxicillin or penicillin to treat strep. Well, it appears that it may work for a very small number of PANDAS kids. Most kids on this forum seem to have the most success with Augmentin or Zithromax. Note...some do well on Keflex or Omnicef too ( I'd say those 2 come in second place on the forum).

 

As for figuring out what may be causing the autoimmune reaction, like Mom w/OCD son said, you will want to investigate a few things like strep and Mycoplasma. A basic strep test is an easy place to start for strep. You can also rule out strep in all family members since some PANDAS kids will react to exposure as well.

 

I know you said you've read this forum before, but I will give some links that are important in case you haven't seen them.

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

PANDAS Flowchart (suggestion for going through the diagnosis process)

http://www.latitudes.org/forums/index.php?...ic=6688&hl=

[Fixit]

Good Job doing what you are doing...

i find it interesting the results you are getting!!!

 

Now...if you are going to the doctors and you are paying the co-pay and you've waited an 1 1/2 hours

and like my self have 3 kids....i would also get a blood draw.(my kids, unfortunately are pros)...and here is the list i would start with as a general pand/pit check and you may have to go further from here,,,,,ie celiacs, parasites etc

 

ASo

antDNase A B

Myco p igg igm

tsh t3 t4

ferritin

vita D3

mag

Bs

immuglolbin panel

ebv

Lyme test..Western Blot...try to get IGenexo(lyme mom can fill you better on this)

 

If anyone has some others i think it would be nice to have a general starting list!!!

and this will not drain them dry!!!

 

 

 

Hi there,

 

I have looked through lots of the forums here and they have been helpful so far. I still feel the need to get what is happening with us out here and see what people say.

 

About 8-9 months ago, our son started moving his neck in a way that made us think he had some real tightness where his occiput meets his first vertebrae. We didn't pay much attention to it other than trying to treat it a bit. For some background on us (Mom and Dad). Mom is a PT and Dad is a Massage Therapist but we only do a form of therapy called CranioSacral Therapy. So we were treating him and it seemed to help a bit.

 

Fast forward to the past 3 months and he has developed a full on motor tic in his neck that also includes a vocal tic. Not a big vocal tic but little grunts here and there. Almost always when his neck is bad.

 

Initially we were thinking TS, then a friend suggested PANDAS. I have been reading and reading. To the point where I am confused.

 

Here is what we have done so far.

 

1. Lots of CranioSacral. Mobilizing the Dural Tube certainly helps but the tics do not go away totally.

 

We stopped treating for a bit and the tics came back..a lot. They also involve a squinting of the eyes.

 

2. Mom got in and treated his Basil Ganglia (BG) directly and had him connect his immune system to the BG. The difference was immediate. The next day and up to about 2 days there were no tics in any way, during the day. they have started up again during the day..but are very very minor.

 

Interestingly they seem to remain at night. As we are relaxing and reading stories, his neck tic is happening but it also seems to involve his body as well. Lots of flopping around.

 

The confusion is around treatment. It seems that people can have a positive test and be asymptomatic or have a negative test and have symptoms. I have also read that Antibiotics really help. I also read that they help until the next strep infection. Part of me wonders if the Antibiotics (A/:) are working, or if because things seems to be episodic in nature maybe it is a lull. With the A/B's, do they get rid of the symptoms immediately?

 

How do we know when to get a test done? Should we start with the rapid response testing or go for a full culture?

 

We would love to treat naturally but if A/B's are the way to go, there is no question we will do that.

 

Any input with Lauracedin or colloidal silver?

 

Love some help.

[Megaman]

Hi everyone,

 

I'm sorry for taking so long to respond. Life kinda took over.

 

Vickie, MomwithOCDson and fixit I really appreciate the support and advice. The links provided are great as is all the information on testing.

 

To give an update. We began giving lauricidin yesterday and the tics seem to be better at night time. Is it a coincidence? Who knows. I asked him today how his neck was feeling and he said it still hurt but not as much. He also said while he still had a few neck things happening at at school, they were not bad. I will say it was news to me that there was anything happening at school. I don't want to add too much into the mix so we can tell what may or may not be working.

 

We are going to talk in the next few days and possibly take him in for a strep test..full culture.

 

To answer the questions about CranioSacral Therapy. It is not like NUCCA although there are a great number of Chiropractors that use it in their daily practice. CranioSacral Therapy works to release restrictions in the membrane system around the brain and spinal cord. In doing so, the fluid that is the environment for the CNS, is able to flow more efficiently. That means there is a greater infusion of nutrients and removal of waste Products. We look at how trauma (birth, car accidents, surgery, etc) has affected the fascial system of the body and in turn, the membrane system.

 

No matter what manual therapy you talk about, good therapists know their anatomy. Knowing anatomy allows you to more precise with your hands and intention of where you are directing the technique. Part of our training is in Neuro Anatomy and how to access different brain structures and help them to function more efficiently. Knowing where the Basil Ganglia is located allows you to put your awareness in that area and help the involved tissues be more supple. Part of the therapy can involve therapeutic imagery and dialogue, meaning the client can dialogue about what is happening for them at the moment. While my wife was treating our son, he asked something along the lines if all cells were allowed into the brain. My wife mentioned the Blood Brain Barrier and its job. He seemed surprised that not all cells were allowed cross and that he had some that were crossing that were not supposed to. Long story short they worked with his body to only allow certain cells across and to hook up his immune system with his Basil Ganglia. As I said, he woke up the next morning tic free and has been for almost 2 weeks. Like I mentioned above, they are starting to return a bit. Probably time for more work..also want to see what the Lauricidin does.

 

There are many people who scoff at what i just talked about. That is entirely up to them. I am not here as a way of promoting myself or the therapy in any way. I am worried about my kid and want to share what we are doing and learn from others. I appreciate everything we have had offered to us so far.

 

I look forward to continuing the conversation.

[tpotter]

Just a quick reply, because I need to get to work. Good list of tests. I agree. Also, my son gets the neck and back involvement. He is constantly trying to "crack" his own back (and has figured out how on certain chairs. It makes him feel better for awhile. I have done some craniosacral on him, which has helped, but I didn't realize it would make such a huge difference. Now I know from your findings, and I'll start doing it more when he gets another episode of neck and back tightness and pain. Thanks for your findings!

 

 

Good Job doing what you are doing...

i find it interesting the results you are getting!!!

 

Now...if you are going to the doctors and you are paying the co-pay and you've waited an 1 1/2 hours

and like my self have 3 kids....i would also get a blood draw.(my kids, unfortunately are pros)...and here is the list i would start with as a general pand/pit check and you may have to go further from here,,,,,ie celiacs, parasites etc

 

ASo

antDNase A B

Myco p igg igm

tsh t3 t4

ferritin

vita D3

mag

Bs

immuglolbin panel

ebv

Lyme test..Western Blot...try to get IGenexo(lyme mom can fill you better on this)

 

If anyone has some others i think it would be nice to have a general starting list!!!

and this will not drain them dry!!!

[MomWithOCDSon]

To answer the questions about CranioSacral Therapy. It is not like NUCCA although there are a great number of Chiropractors that use it in their daily practice. CranioSacral Therapy works to release restrictions in the membrane system around the brain and spinal cord. In doing so, the fluid that is the environment for the CNS, is able to flow more efficiently. That means there is a greater infusion of nutrients and removal of waste Products. We look at how trauma (birth, car accidents, surgery, etc) has affected the fascial system of the body and in turn, the membrane system.

 

No matter what manual therapy you talk about, good therapists know their anatomy. Knowing anatomy allows you to more precise with your hands and intention of where you are directing the technique. Part of our training is in Neuro Anatomy and how to access different brain structures and help them to function more efficiently. Knowing where the Basil Ganglia is located allows you to put your awareness in that area and help the involved tissues be more supple. Part of the therapy can involve therapeutic imagery and dialogue, meaning the client can dialogue about what is happening for them at the moment. While my wife was treating our son, he asked something along the lines if all cells were allowed into the brain. My wife mentioned the Blood Brain Barrier and its job. He seemed surprised that not all cells were allowed cross and that he had some that were crossing that were not supposed to. Long story short they worked with his body to only allow certain cells across and to hook up his immune system with his Basil Ganglia. As I said, he woke up the next morning tic free and has been for almost 2 weeks. Like I mentioned above, they are starting to return a bit. Probably time for more work..also want to see what the Lauricidin does.

 

There are many people who scoff at what i just talked about. That is entirely up to them. I am not here as a way of promoting myself or the therapy in any way. I am worried about my kid and want to share what we are doing and learn from others. I appreciate everything we have had offered to us so far.

 

I look forward to continuing the conversation.

You'll get no scoffing here! Just intense interest! I'm going to do some web research but would be most grateful if you could point me to an association or other professional group of CranialSacral therapeutic practitioners so I might find one in our area.

 

Please let us know how the Laurecidan works for you, as well as the cranialsacral.

 

Thanks!

[Megaman]

You'll get no scoffing here! Just intense interest! I'm going to do some web research but would be most grateful if you could point me to an association or other professional group of CranialSacral therapeutic practitioners so I might find one in our area.

 

Please let us know how the Laurecidan works for you, as well as the cranialsacral.

 

Thanks!

 

Hi there,

 

Full Disclosure: I teach for The Upledger Institute. I want to present the information in as clear a way as possible. I know how it can look to have a newbie on a forum all of a sudden start preaching about a therapy. I will not do that...too much

 

 

There are different schools of CranioSacral Therapy. I my opinion the best researched and developed is The Upledger Institute's model. Dr. John Upledger is an Osteopathic Physician who spent 40 years continuing to develop the work. His is the most well recognized of all the schools. The Upledger Insitute

 

They have a link to help you locate a practitioner in your area.

 

Two other schools are

BioDynamic Craniosacral therapy

Milne Institute

 

When searching on the Upledger site, I would suggest looking for someone who has been through the pediatric training and also the "Brain Curriculum" This is a new curriculum developed by Dr. Bruno Chikly. When I was talking of working with the Basil Ganglia, it was using a combination of CranioSacral Therapy and the Brain work of Bruno Chikly. I will include a link to his website. It is a new website and is still not fully up and running but it does provide some information

 

Chikly Health Institute

 

In doing research you will find there are two very distinct camps. Those who love it and those who (almost) hate it. A big part of the latter is there is still a view in some medical circles, and therefore schools, that the sutures between our cranial bones fuse by adulthood. This can happen where there is a pathology present such as craniosynostosis.

 

craniosynostosis

 

What has been found is that the sutures actually stay mobile throughout life and can be used as handles (for lack of a better term) to help mobilize the membrane system inside the head.

 

I hope this helps some. Please let me know if there is anything else I can provide.

 

Back to my son. His tic's were back a little tonight during dinner. Hardly notice them if you didn't know what to look for. they are still there at bed. We did some work with his Blood Brain Barrier and helping it to recognize appropriate cells. I'll keep you updated.

 

BTW..has anybody else noticed that there are no motor tics during sleep?

[MomWithOCDSon]

In doing research you will find there are two very distinct camps. Those who love it and those who (almost) hate it.

 

Story of my/our life/lives! PANDAS has its camps, too, as I'm sure you've noticed! As do all the other issues and labels my son has been granted over the last several years: ADHD, Aspberger, etc. I used to like camping . . . . . now, not so much!

 

Thanks for the information. My dad suffers from a degenerative spine disorder and has been wheelchair bound and in fairly constant pain for the last several years; he's had epidurals, morphine, acupuncture, biofeedback, you name it, and the relief was fleeting if it ever came at all. But a couple of months ago he was introduced to something at least akin to the work it appears your work might be associated with (he's been calling it "Healing Touch"), and he's actually getting some lasting relief from it! Way cool!

 

So, I've found a CST and Brain Cirriculum practioner in my area, and she'll be getting a phone call tomorrow. I'm excited and hopeful, and I'll let you know what results.

 

My DS has very minor tics (throat clearing, mostly), and those really only appear during distress. But I have read in many threads here that the tic behaviors do generally subside in sleep. Have you heard/read/seen videos of Lauren Johnson, one of the more recent "poster child" for PANDAS? Her story has been on the "Today Show," etc. She famously developed a sneezing tic, virtually overnight, following a bout with strep. Apparently, the only time she got relief prior to treatment was during sleep!

[Chemar]

Any input with Lauracedin or colloidal silver?

 

Love some help.

 

Hi

 

my son is not PANDAS. He has genetic inherited tourette syndrome, which my hubby has too (grandpa and greatgrandpa as well) We believe he also is likely PITAND (similar to PANDAS but triggered by infections other than strep, in his case Epstein Barr virus)

 

in addition he has Crohn's Disease, which may also be associated with mycoplasma

 

My son's condition has been pretty stable and mild for some years now (he is 20yo) due to a variety of natural treatments that we have used (see my siggie link if you want details)

 

one of the natural antibiotics that he takes is Monolaurin, which is also lauric acid/lauricidin. extracted from coconuts. We use the Cardiovascular Research brand that I get at our local The Vitamin Shoppe. It is considered a pretty full spectrum antimicrobial. Interesting to also discover that lauricidin is produced in breast milk to function as a natural antibiotic for newborns (he also takes olive leaf extract and candida clear (contains assorted antimicrobials including oli of oregano, capryllic acid, pau d'arco, wormwood etc) and the amino acid L-Lysine, a potent antiviral

 

There are also a lot of natural antibiotic foods like garlic, honey, turmeric and probiotic stoneyfield farms yoghurt, kefir.

 

I do know a number of people who feel colloidal silver to be very beneficial as an antimicrobial. The only problem is one cannot use it longterm because of the silver depositing in the skin

 

many of the PANDAS children here are very ill tho, and do seem to need the full strength of prescription antibiotics.

Edited April 7, 2010 by Chemar
adding

[SunshineStateMom]

Hi there,

 

I have looked through lots of the forums here and they have been helpful so far. I still feel the need to get what is happening with us out here and see what people say.

 

About 8-9 months ago, our son started moving his neck in a way that made us think he had some real tightness where his occiput meets his first vertebrae. We didn't pay much attention to it other than trying to treat it a bit. For some background on us (Mom and Dad). Mom is a PT and Dad is a Massage Therapist but we only do a form of therapy called CranioSacral Therapy. So we were treating him and it seemed to help a bit.

 

Fast forward to the past 3 months and he has developed a full on motor tic in his neck that also includes a vocal tic. Not a big vocal tic but little grunts here and there. Almost always when his neck is bad.

 

Initially we were thinking TS, then a friend suggested PANDAS. I have been reading and reading. To the point where I am confused.

 

Here is what we have done so far.

 

1. Lots of CranioSacral. Mobilizing the Dural Tube certainly helps but the tics do not go away totally.

 

We stopped treating for a bit and the tics came back..a lot. They also involve a squinting of the eyes.

 

2. Mom got in and treated his Basil Ganglia (BG) directly and had him connect his immune system to the BG. The difference was immediate. The next day and up to about 2 days there were no tics in any way, during the day. they have started up again during the day..but are very very minor.

 

Interestingly they seem to remain at night. As we are relaxing and reading stories, his neck tic is happening but it also seems to involve his body as well. Lots of flopping around.

 

The confusion is around treatment. It seems that people can have a positive test and be asymptomatic or have a negative test and have symptoms. I have also read that Antibiotics really help. I also read that they help until the next strep infection. Part of me wonders if the Antibiotics (A/:lol: are working, or if because things seems to be episodic in nature maybe it is a lull. With the A/B's, do they get rid of the symptoms immediately?

 

How do we know when to get a test done? Should we start with the rapid response testing or go for a full culture?

 

We would love to treat naturally but if A/B's are the way to go, there is no question we will do that.

 

Any input with Lauracedin or colloidal silver?

 

Love some help.

Edited April 8, 2010 by SunshineStateMom

[SunshineStateMom]

I am interested in CST and think we live in the same area. I sent you a PM and hope to hear from you. Thanks.

[Megaman]

I am interested in CST and think we live in the same area. I sent you a PM and hope to hear from you. Thanks.

 

I sent you a pm with the name of an excellent therapist in the area.

 

For an update with our son. He seems to be doing very well. No vocal tics in at least a week and his neck tics are almost completely gone. He has been taking 2 teaspoons of lauricidin every day. He hates them as they taste like they are wax coated. We tell him not to chew..but he's 6. We are going to get a capsule form of monolauren and pour the powder into drinks/food etc.

 

Today we are also going to start on colloidal silver. Monday we are planning on going for a Strep test just so we know what is going on.

 

Love to hear how things progress momwithocdson..and everybody else for that matter.

[Fixit]

I am interested in CST and think we live in the same area. I sent you a PM and hope to hear from you. Thanks.

 

I sent you a pm with the name of an excellent therapist in the area.

 

For an update with our son. He seems to be doing very well. No vocal tics in at least a week and his neck tics are almost completely gone. He has been taking 2 teaspoons of lauricidin every day. He hates them as they taste like they are wax coated. We tell him not to chew..but he's 6. We are going to get a capsule form of monolauren and pour the powder into drinks/food etc.

 

Today we are also going to start on colloidal silver. Monday we are planning on going for a Strep test just so we know what is going on.

 

Love to hear how things progress momwithocdson..and everybody else for that matter.

 

what is the difference between lauricidin and monolaurin?

do you have a name of someone in the alpharetta,(north side of atlanta) area.for CST??

[MomWithOCDSon]

I am interested in CST and think we live in the same area. I sent you a PM and hope to hear from you. Thanks.

 

I sent you a pm with the name of an excellent therapist in the area.

 

For an update with our son. He seems to be doing very well. No vocal tics in at least a week and his neck tics are almost completely gone. He has been taking 2 teaspoons of lauricidin every day. He hates them as they taste like they are wax coated. We tell him not to chew..but he's 6. We are going to get a capsule form of monolauren and pour the powder into drinks/food etc.

 

Today we are also going to start on colloidal silver. Monday we are planning on going for a Strep test just so we know what is going on.

 

Love to hear how things progress momwithocdson..and everybody else for that matter.

 

what is the difference between lauricidin and monolaurin?

do you have a name of someone in the alpharetta,(north side of atlanta) area.for CST??

Fixit --

 

Maybe you'd like a specific referral from Megaman, but I can tell you that I found a local CST practitioner by going to the Upledger Institute web site, and then following yet another link to "Find a Therapist":

 

Find a CST Practitioner Near You

 

Then I PM-ed Megaman to check and see if he knew of the therapist I'd located, and he got back to me within a couple of days.

 

Our appointment isn't for another week or so, yet, but I'll let you know how it goes. Hopeful!