Where to even begin

[jph]

I'm quite sure ds, 8, has PANS. Though he's never had a flare as nasty as the first (acute onset), he does cycle in terms of moods, he's had tics for 2+ years since it started, and he presents right now and for a while now with what appears to be Tourette's. I have several options I'm weighting right now about where to start, and I would desperately love those with experience to tell me what you think.

 

First, what I've done for the past 2+ years: Alternative allergy treatment center with many food sensitivities being treated (no environmental allergies came up on the tests)- but none of this has helped with his tics/Tourette's/moods at all.

 

Saw a world-renowned MD who has a holistic practice; he recommended a ton of probiotic supplements, which we did for one month with no difference.

 

My ds has always eaten a relatively clean diet with mostly organic foods and very little dyes, hfcs, sugars, etc.

 

Now what? I'm considering a few things:

 

Take him to a traditional osteopath who believes he can effectively treat him using hands-on therapy. I have gone to this doc myself for physical ailments so have had the chance to talk with him. He treats everything from ear infections to cancer successfully the same way: hands-on traditional osteopathy. I *want* to believe this will work bc it's the least invasive. Has anyone had success with this?

 

Take him to a highly recommended chiropractor who does body scans with some machine that supposedly shows where the body is lacking in functionality/nutrition/whatever else. Chiropractic treatment is used as well as herbs and homeopathy, in addition to follow-up scans. (Ds has seen a chiro regularly during his lifetime, so chiro itself would not be new to him.)

 

I actually have an appt with the famous Dr. K in Chicagoland in about 2 weeks but I am on the fence about following through with the appt as I realize the protocol if he does have PANS or some variation is long term abx use and/or IVIG- which sounds incredibly scary to me with seemingly all these other natural tx out there... And he has not had a true psychotic episode except when this all began... I would not hesitate to go this route if it was out of control... but hesitate when it's "just" Tourette's.

 

As a mother I am at my moment of having another breakdown. This all feels so completely out of control. Thank you for any insights you're able to offer.

[MomWithOCDSon]

IMHO, how you respond to your DS's current condition is probably best gauged by your gut and by how intrusive -- or not -- his condition is in terms of his day-to-day functionality, happiness, and overall quality of life. You appear to be familiar and comfortable with the more holistic, natural responses. But those interventions typically take longer to take root and reach full efficacy, in my experience, right? So, if your DS is doing "okay," but not "great," maybe you can afford to try some of those things and see if they will help him.

 

On the other hand, if he's having a really tough time, struggling on a daily basis, then I would think the intervention would need to fit the illness and probably be a stronger response in kind. I know that my family was finally brought to PANDAS/PANS by a particularly virulent episode after having treated our DS with a "regular OCD" diagnosis and typical interventions for almost 6 years. But when he fell off the edge of the planet at 12 and was completely dysfunctional, we knew for certain that this wasn't "regular OCD" and that he needed something the therapy and psych meds were not capable of giving him.

 

What makes you think your DS is PANS? Do you have links to known medical triggers, such as lyme, myco p., etc.? Have you had testing for those types of known triggers? But you say "PANS" rather than "PANDAS," so you've eliminated strep as a potential culprit? Experientially, or through testing? I will tell you that my DS never had a case of "classic strep," including never having had a postive swab or culture. But when our world changed during his 12th year, we finally were able to get some blood testing done and found that his strep titers were exceptionally high, and they continued to move higher over the next few months, as well. Now, not every kid with PANDAS or PANS, even, will display high titers, but if they do, it can be a wake-up call that strep is playing a role, even if your kid has never had so much as a fever or a scratchy throat.

 

Keeping your appointment with Dr. K. will probably assist you with some clarity on the situation as he has seen hundreds of kids with PANDAS/PANs and can give you some insight about your DS that may not yet have occurred to you. He can also provide an order for some immune panel testing, if you haven't had that done on your own as of yet. That doesn't mean that you necessarily have to follow through with his suggested line of treatment, of course. Which, if he believes your DS has PANDAs/PANs, is likely to be IVIG; historically, his protocol has been IVIG, followed by a course of abx to help protect the child while the immune system rebuilds. He may also prescribe a short course of steroids as a diagnostic tool, the thought being that if the steroids assist your child in terms of decreasing PANDAS/PANs behaviors, then chances are the behaviors are, to some extent anyway, the result of inflammation in the brain which the steroids are temporarily helping to quell.

 

In the end, to the extent your DS continues to suffer because of the tics and/or other behaviors, and to the extent your gut is telling you there's something else in the picture that needs to be addressed, I would move forward with searching for, identifying and addressing the underlying cause of the tics or other behaviors. My family bought the "regular OCD" diagnosis for far too long, I now know in retrospect, and as a result, my DS and the rest of us took a very painful journey that I think may have been avoided had we gotten the proper interventions earlier.

 

Good luck to you!

[LNN]

This is only my personal experience and personal opinion. I think there can be many reasons for tics and many things that can help reduce them. The owner of these forums, Shelia Rogers Demare, has published a book with lots of great anecdotes/ideas to try http://www.amazon.com/Natural-Treatments-Tics-Tourettes-Patient/dp/1556437471/ref=sr_1_1?ie=UTF8&qid=1351604011&sr=8-1&keywords=sheila+rogers

 

My son was once a big ticcer. In hindsight, I think it was caused by his body/antibiotics killing bacteria. When certain bacteria die, they release toxins. If the body can't get rid of these toxins efficiently, it can cause many neurological issues - tics being one of them. I think this was my son's issue. His tics greatly subsided when he had a T&A (he likely had chronically infected tonsils or adenoids). We went 18 months tic-free and then they returned when we did an aggressive lyme treatment with tindamax. The tics went away when we stopped the tindamax after 5 weeks (it was just too much for his body to handle at once).

 

With this in mind, we've focused a lot of helping the body's detox system (the transsulfuration pathway). He takes alpha lipoic acid and/or resveratrol to help his body make more glutathione - the main antioxidant for the body. He takes milk thistle to support his liver (abx and motrin are hard on the liver). He takes vitamin C, zinc and B6 to help the immune system and antioxidant system. He takes lecithin to strengthen his BBB. Tyrosine seems to be an especially important supplement for him - tyrosine is a precursor to dopamine, which seems to play a role in tics.

 

So I think you can work with an integrative doctor to use various supplements that can help. You can do labs - blood and stool - to look for imbalances or problems with fungus, yeast, bad bacteria, metals... Since this seems to be your leaning anyway, I think this may be worth exploring.

 

As for your appt with Dr K - here's my personal opinion. I think patients end up being self-selecting. Many of us see multiple doctors and end up staying with the one(s) who approach the problem in a way we're comfortable with. Dr X can say my protocol is to do "x, y and z and I have great success". I think that's partly because those who don't respond to "x, y and z" end up going elsewhere. Those whose guts tell them that "x, y and z" aren't right for them never even see dr X in the first place. Given your description of Dr K's protocol as scary, and your preference for a more natural/gentler approach, I think there are other doctors who may be a better fit for you. I have no experience with hands-on or chiropractic approaches, but it sounds like working with a doctor who supports the body would be a better fit than working with one whose approach is to suppress the body.

 

You may also want to look into methylation as a research topic. It can play an important role in how the body is able to perform at its best. Good luck with your decisions!

[Dedee]

I am so sorry for what you are going through. I can tell you are in pain for your son and that is a horrible feeling. It is great that your son does so well with a "clean diet". That is very important for PANS children. You say that you feel like he is "just tourette's". But you also say that you feel like you are having a breakdown (I can certainly relate). This tells me that he must be doing something other than having tics??? You mentioned mood changes. Are there other things? I am all for "natural" therapies and a holistic approach. Many on this board have found help that way. For us, we have used a combination of traditional medicine (antibiotics), herbal therapies, and psycotherapy (CBT/ERP). It has been the combination of antibiotics, IVIG, treating methylation, and the use of supplements that has gotten us back on track. We still aren't 100%, but definately feel we are on our way.

 

Everyone has to do what they feel is right for their family. You didn't mention why you believe your son has PANS. Just remember that PANS is an infection based neurologic disorder and most children respond well to an extended dose of antibiotics. It sounds as if you have tried everything except antibiotics. PANS kids will require more than just the average 10 days. A one month trial is average. Antibiotics is the usual treatment for PANS. If you are at your wits end (and it sounds like you are), you might consider giving it a try.

 

Best of luck - Dedee

[Missmom]

If it were me, I would keep the appt. with dr. K. Just to establish your son as a patient and to ask for a full panel of labwork. This will allow you to see if anything is truly out of whack. Also, if your son were to ever have another major episode you will have a baseline and it will give you something to go on. I would also start with trying a month or two of abx, just to see if you notice any improvement. Your son is just 8 years old and for now his tics may seem manageable, but from my experience with my son now being 12, it only gets harder. My son is now in middle school, and the boys can just be outright mean. I have been trying to control his tics, but when he flairs up they start calling names and talking about him. It is heartbreaking.

 

My son is taking augmentin 2x a day, probiotics, and visteril at night to help him sleep. He is not 100% but for now the only symptom left is a head nod tic that I am hoping will subside soon. Last month he was at 100% for about two weeks then I tried to reduce the dose of augmentin and he started regressing. I guess it was too soon.

 

It sounds like you would rather take a natural approach which is fine, but I would at least consider trying a low dose abx. as a preventative especially during school months.

 

Good luck

[Fixit]

Just my 2 cents.

I am a mom of 3 pandas kids(main, or sole symptom tics)(yah disgraphia...gets an occasional mood, but if you are constantly ticcing or have an infection, you tend to get cranky...((i do as an adult when i just get a little run down))

With this 3+yrs episode we have had trichatelanamia, one run of bed wetting,...but disgraphia is the next next worse symptom

 

There is really more to say than that, but to get the influctuation, and all the subtleties out is difficult to type.

 

Let me say there is a lot of info to reseach.

ds12 did pex and got worse.

i believe there was and infection that didn't clear prior to it as he had an a salvaary gland infection that came back 2x's and we just stopped the abx for that 1 week prior to pex. Also just found out, other than some lyme indicators, he has a VERY high viral load...so there are a couple of other reasons why pex may not have worked, other than overshoot.

We have not done ivig.

 

1...keep the apt with dr....you will have it done...get his point of view...chew on the info he presents. You don't have to do any of it.

2...salicylates really affect my ds12 ...over the years it has gotten worse...and no dr seems think it an issue. i just stopped all, about 5 weeks ago and life is better.

3..slowly adding key vitamins.

4 ...ds has other terrible pollen allergies that are crippling. he has been on allergyshots for 2 years. this is scary to start..but for us may be the right thing so far....not to say i won't pull them if i feel that is what is holding him back.

5...per sal issue...i keep coming to thyroid issue....at 5yrs he tested out of range...drs didn't want to do anytying????..if there is a scale and you don't follow it...why do you measure????

at 9 when the sh(*&* really hit fan(we had 13-15 strep/tic epsisodes prior with complete remission), i took him to my thyroid guy and put him on meds.

now that i know more...i may have to increase dose> I am getting info that suggests that some sal issues are tied to poor thyroid....needs to be dead center of scale. But poor thyroid may be due to candida and too much glutin...(attacKs thyroid)

6 then look into aminos

7...THIS REALLY SHOULD BE HIGHER ON THIS LIST...CHECK FOR ALL/ANY INFECTIONS...THERE IS A LONG LIST.(so you do need dr's to start)

8..check for all dysbiios,,,methylyization, candida, thyroid,ect.

 

 

per many very smart people including amy yasko, bonnie grimalrdli and others..quite a few here on this board....strep does something, not only to the brain....but the gut...

 

 

So here is some old stuff from Bonnie Grimaldi

 

The following addresses TS/OCD/ADD. The diagnosis would lie

in the degree of vitamin B6 dependency/deficiency, and how long

the person has been in this state. Carl Hansen, Jr. M.D. of

Minneapolis describes celiac disease in several of his TS patients.

This could be a pathway to vitamin B6 deficiency via malabsorption.

Streptococcal infections have also been associated with TS. This

could be a combination of the hyaluronidase's (an enzyme produced

by the hemolytic strep that depolymerizes the ground substance of

tissue) or streptokinase's actions on the blood brain barrier, the

drain of vitamin B6 from the bacteria's own useage, the body's

requirement of B6 for immunity, and the antibiotic's B6 antagonistic

properties. A pre-exising B6 dependency/deficiency could be uncovered.

 

Then a bit later in the same article

 

I solidified my theory on the premise that Jason

is probably mildly vitamin B6 dependent. He was either born requiring

high amounts of B6, and/or B6 antagonists attacked early in his first year

of life. B6 antagonists are hydrazines (plant growth regulators,

tartrazine,

etc), DOPA found in certain beans, penicillinamine, antioxidants in

petroleum, many drugs including penicillin, erythromycin, phenobarbital,

tetracycline, corticosteroids, sulfamethoxazole, etc. Amino acids began

building up in his system, from decreased transamination, etc.

Serotonin became decreased from tryptophan not being able to

be utilized. Allergies developed (which is in association with low B6),

I believe allergy produces swings in histamine levels which causes

a constant fluctuation in neurotransmitters capable of producing mood

swings and rages. The conservation of vitamin B6 (when not abundantly

available) causes it to be used by the prevailing neurotransmitter system

at any given time, leaving other neurotransmitter systems less than

optimally functional. Histamine receptors have been found to trigger

dopamine receptors directly.

Histamine is also a neurotransmitter affected by deficient vitamin B6.

Its

receptor sites are probably increased to compensate. Kinins released

into the body's tissues in response to immune complexes can damage

the blood brain barrier, thus altering the sensitivity of brain cells to

acetylcholine, serotonin, dopamine, histamine, epineprine and

norepineprine.

 

 

http://www.bio.net/bionet/mm/neur-sci/1996-February/022416.html

 

http://gordonresearch.com/articles_autism/role_of_excitotoxins.html

[jph]

Today has been a terrible day. Tics are 10/10 in intensity and frequency and I'm not sure I can handle one more tic. DS and I did make a few discoveries in the past 24 hours. #1 *Thoughts* make him tic. No joke at all, when a "girly" thought (pink, for example) of a thought of a girl crosses his mind, he tics, and it's a nasty one- his eyes roll to one side, his face grimaces up, his neck turns to the side, his fists ball up, his shoulders shrug, and he loudly whispers, "I hate girls!" Over and over and over. Like hiccups or sneezes, they come in bunches. #2 He does NOT tic while playing video games that he likes. ???!!! I can even say "girly" words to him while he plays, and he's aware I am saying them, but he said the need to tic is so tiny that he doesn't even need to do it. When he's not playing video games and I say a "girly" word, it sets him off. I know he doesn't mean to be hurtful, but it is. I am a girl; his sister is a girl. We set him off. He loves us, of course, and he has many girl friends. We are all triggers. We can't pinpoint any other triggers at this time. We have also been unable to identify any specific triggers for other tics in the past.

 

The anger seems to be a tic as well. Has anyone ever heard of this? It seriously comes and goes like a sneeze. It can turn on and off in a second, though generally when it comes, it stays for a bout of time, but not always.

 

If there has been an infection for over 2 years causing the tics, what is the likelihood that abx will help? I thought I read somewhere that it needs to be caught early for them to help. Abx did have an immediate effect on his ocd and rageful behavior about 6 weeks after the initial onset, but they were given for something unrelated to this and only given for the standard 10 days. Some things immediately disappeared while others lingered and eventually fizzled away over a few months' time, except the tics, which have only gotten worse over time. A year or so later, he tried another 10 day course of abx to see if it would help anything, but nothing changed.

 

He actually doesn't seem to be affected by a clean diet. I only said that bc it seems that many have been helped by cleaning up their diet. I wonder what he'd be like if he didn't, or if he was vaccinated. I shudder to imagine. There was a point early on when I thought he had become autistic. I think he has a very sensitive system.

 

I will keep the appt with Dr. K, especially bc things are so out of control today. A few days ago I would have said we could live like this, but we cannot now. It's a whopping $500 out of pocket to see him bc we have a sky-high deductible, but I'm guessing I won't be the only one spending my life savings to help my child if needed! I did email him to see if there are tests we can do before we see him just to get the ball moving.

 

I spoke on the phone today with the chiropractor I mentioned in my first post. He's an amazing guy, a Sherlock Holmes of healing. He asked a ton of questions and gave me some things to try based on my answers (a juicing recipe and GSE) and I'm to call him in a few days. One thing that really stuck with me was something along the lines of doing what medical things might need to be done (abx, for instance) and detoxing later. It's so important to me to keep his system clean. I guess I might be meant to be challenged by this one.

 

I have no idea what medical issue is causing it. I don't think it's strep bc a few times when he's had a flare up he had throat swabs and bloodwork done (different times) that did not show strep. I know he did have a snotty nose for 2 years prior to and along with his acute onset of rage/anger/ocd/sensory/tics- so perhaps there is/was a chronic infection in his sinuses or somewhere... And as a side note, the snotty nose cleared up once we discovered he was allergic to carpet (thanks to a quantum healer for that information!) and had him treated for it. The clear up was about 6-7 months after onset of what I think is PANS.

 

Thank God we homeschool bc I can't even imagine what the world would be like for him if he went to school.

 

I haven't answered questions in any particular order, but I truly appreciate all of your responses. It is somehow helpful to read your stories and hear what you've done, and where you are now. I would give anything to have someone who understands this better than me come sit in my living room right now!

Edited October 30, 2012 by jph

[Dedee]

I'm not exactly sure what you mean by the anger being like a tic. My daughter has intermittent anger episodes that you would never be able to predict. This is not what I would call a tic. In our situation, it is another symptom of her PANS. She was (sometimes still is) very explosive with rages. Never knew what would set her off. One day something might not bother her at all and the next day it would cause her to explode. This is a symptom of PANS. This has gotten much better since she has been treated for her Myco p (and lyme) for over a year now. Also she has had one IVIG and treating methylation as well.

 

If antibiotics have worked before, I suspect they would work again. You need to have testing done for your son to see what underlying infection may be lurking. Biaxin and Zithromax are both good for treating both strep and myco p. It's always best to know exactly what you are dealing with though. I know very little about how much testing Dr. K does for infection. Regardless of where you go, you need to request testing for strep titers and myco p titers at a minimum.

 

Dedee

Edited October 30, 2012 by Dedee

[jph]

Thank you for sharing how your anger comes on with your daughter! It's all new to me as far as understanding what's actually going on. I appreciate having others' words of wisdom. What other things (besides testing for strep titers and myco p titers) should I put on my list? Anyone?

 

I'm not exactly sure what you mean by the anger being like a tic. My daughter has intermittent anger episodes that you would never be able to predict. This is not what I would call a tic. In our situation, it is another symptom of her PANS. She was (sometimes still is) very explosive with rages. Never knew what would set her off. One day something might not bother her at all and the next day it would cause her to explode. This is a symptom of PANS. This has gotten much better since she has been treated for her Myco p (and lyme) for over a year now. Also she has had one IVIG and treating methylation as well.

 

If antibiotics have worked before, I suspect they would work again. You need to have testing done for your son to see what underlying infection may be lurking. Biaxin and Zithromax are both good for treating both strep and myco p. It's always best to know exactly what you are dealing with though. I know very little about how much testing Dr. K does for infection. Regardless of where you go, you need to request testing for strep titers and myco p titers at a minimum.

 

Dedee

[mama2alex]

You might consider having him swabbed for strep right now, since things seem to have changed recently.

 

He should also be evaluated for Lyme and coinfections by a qualified Lyme doctor. Many on this forum are dealing with Lyme along with other infections. And of course the strep titers and mycoplasma should be checked. I don't think Dr. K looks at Lyme - at least he didn't when we went to him, so you'll have to set up a separate appointment to look into that, but a Lyme doctor can do all the testing for other infections, including viruses.

 

My son was not diagnosed with Lyme until a year after the overnight onset of PANS/PANDAS (about 5 years after his initial, brief PANS/PANDAS episode), and he has improved greatly with anitbiotic treatment. After infections have gone on for that long, its more complicated and may be harder to treat, but that doesn't mean he (and you) can't get relief at this point.

 

Don't worry, you will get through this. It's good you've found this forum.

[jph]

Are you saying it might be more beneficial to see a Lyme specialist first, bc they can order all the tests I'd want? Do you have any suggestions for other tests I'd want to have done?

 

You might consider having him swabbed for strep right now, since things seem to have changed recently.

 

He should also be evaluated for Lyme and coinfections by a qualified Lyme doctor. Many on this forum are dealing with Lyme along with other infections. And of course the strep titers and mycoplasma should be checked. I don't think Dr. K looks at Lyme - at least he didn't when we went to him, so you'll have to set up a separate appointment to look into that, but a Lyme doctor can do all the testing for other infections, including viruses.

 

My son was not diagnosed with Lyme until a year after the overnight onset of PANS/PANDAS (about 5 years after his initial, brief PANS/PANDAS episode), and he has improved greatly with anitbiotic treatment. After infections have gone on for that long, its more complicated and may be harder to treat, but that doesn't mean he (and you) can't get relief at this point.

 

Don't worry, you will get through this. It's good you've found this forum.

[smartyjones]

I'm quite sure ds, 8, has PANS.

First, what I've done for the past 2+ years: Alternative allergy treatment center with many food sensitivities being treated (no environmental allergies came up on the tests)- but none of this has helped with his tics/Tourette's/moods at all.

 

Saw a world-renowned MD who has a holistic practice; he recommended a ton of probiotic supplements, which we did for one month with no difference.

 

My ds has always eaten a relatively clean diet with mostly organic foods and very little dyes, hfcs, sugars, etc.

 

Take him to a traditional osteopath who believes he can effectively treat him using hands-on therapy. I have gone to this doc myself for physical ailments so have had the chance to talk with him. He treats everything from ear infections to cancer successfully the same way: hands-on traditional osteopathy. I *want* to believe this will work bc it's the least invasive. Has anyone had success with this?

 

Take him to a highly recommended chiropractor who does body scans with some machine that supposedly shows where the body is lacking in functionality/nutrition/whatever else. Chiropractic treatment is used as well as herbs and homeopathy, in addition to follow-up scans. (Ds has seen a chiro regularly during his lifetime, so chiro itself would not be new to him.)

 

I actually have an appt with the famous Dr. K in Chicagoland in about 2 weeks but I am on the fence about following through with the appt as I realize the protocol if he does have PANS or some variation is long term abx use and/or IVIG- which sounds incredibly scary to me with seemingly all these other natural tx out there... And he has not had a true psychotic episode except when this all began... I would not hesitate to go this route if it was out of control... but hesitate when it's "just" Tourette's.

 

As a mother I am at my moment of having another breakdown. This all feels so completely out of control. Thank you for any insights you're able to offer.

 

 

jph -- yes, i know the out of control breakdown all too well. a while ago, i read a book that had some advice i really liked -- get a notebook and on the right side, write down all your goals to accomplish for the day -- the real, live things you can reasonably accomplish and that is your to do list. on the left side, write down the things you need 'help' with -- be it from what ever you see as your higher power or source or whatever -- that is what you need help with. go about your day crossing off what you can and will get done from the right side, leave the others -- you are asking for help with them. (i did this a few months ago with an 'answer' for ds's school situation and within a few days, a 'spot' at the charter school i had been hoping for came available for him and it's been a great situation the past few months. -- i'm not explaining it so eloquently -- if you're interested, i can see if i can find the book to reference.

 

in our journey - we have done some of the techniques you are discussing. first, i am a strong believer in getting at the infections. we've done gf/cf with good times and exacerbations while strictly on the diet. he is not currently on it. i think he needed it at the time of onset b/c his system was so askew, but i don't think it was a key in and of itself for his healing. we've done cranial sacral therapy -- i think we saw some benefits but not a key -- something i may like to go back to. we currently see an integrative MD who uses homeopathy to treat infection -- and he discovered many for ds -- i think this has been key. we recently added another MD - kind of sort of like a DAN who is working on balancing some aspects for ds -- his copper/zinc is out of whack -- i think this has also been important.

 

so is your current decision between the chiro and dr K? i think my first questions are 1 - what and why are you thinking infections and 2 - are you feeling you need to ferret out various infections and specifically treat or are you interested in immune modulating techniques.

[jph]

Thanks smartyjones. Great advise about not needing to carry it all alone. It's so hard to let go, to just survive and not let the "other" things stress me out. I feel like I've tried so many different holistic routes.. that I'm wanting to check on infections now. (Yes, in the same day that I was concerned about which route to take, I've decide I need to at least find out what's triggering him.) So, we will see Dr. K. To answer your questions, 1. I have zero idea what the infection(s) are. Where do I even start to look?? 2. I have no idea what immune modulating techniques are. A google search did nothing for me. Can you explain it a bit?

 

jph -- yes, i know the out of control breakdown all too well. a while ago, i read a book that had some advice i really liked -- get a notebook and on the right side, write down all your goals to accomplish for the day -- the real, live things you can reasonably accomplish and that is your to do list. on the left side, write down the things you need 'help' with -- be it from what ever you see as your higher power or source or whatever -- that is what you need help with. go about your day crossing off what you can and will get done from the right side, leave the others -- you are asking for help with them. (i did this a few months ago with an 'answer' for ds's school situation and within a few days, a 'spot' at the charter school i had been hoping for came available for him and it's been a great situation the past few months. -- i'm not explaining it so eloquently -- if you're interested, i can see if i can find the book to reference.

 

in our journey - we have done some of the techniques you are discussing. first, i am a strong believer in getting at the infections. we've done gf/cf with good times and exacerbations while strictly on the diet. he is not currently on it. i think he needed it at the time of onset b/c his system was so askew, but i don't think it was a key in and of itself for his healing. we've done cranial sacral therapy -- i think we saw some benefits but not a key -- something i may like to go back to. we currently see an integrative MD who uses homeopathy to treat infection -- and he discovered many for ds -- i think this has been key. we recently added another MD - kind of sort of like a DAN who is working on balancing some aspects for ds -- his copper/zinc is out of whack -- i think this has also been important.

 

so is your current decision between the chiro and dr K? i think my first questions are 1 - what and why are you thinking infections and 2 - are you feeling you need to ferret out various infections and specifically treat or are you interested in immune modulating techniques.

[kos_mom]

jph,

 

Thanks for the explanation. I would not call this Tourette's. It's a tic all right, but it is triggered by OCD, in this case a strong aversion to all things girls. You could call it tic-related OCD or tourettic ocd, a term coined by the ERP therapist my son had. My DS sound so very similar to yours. While he had all kinds of behaviors--touching thresholds, circling chairs before sitting, shoulder shrugging and eye blinking, the one with the real staying power was ticcing when he heard certain words, or even more specifically, phoenemes. In some cases, they were clearly contamination related--shampoo for example. Others were what I called the God words--God, Lord, Jesus. (This shed a whole new light on the saying cleanliness is next to godliness.) If he knew we knew the words bothered him and we said them anyway he would rage at us. I can't comment on video games as we did not have those, but I can say sleep gave him no respite--if the words popped up in his dreams he would tic.

 

This was a very long time ago and it took six years to resolve. It started after a strep when he was 7, waned a great deal and was pretty much gone jusst as he got hit with another strep at age 9 adn a half. (Two prior illnesses resulted in a single OCD behavior that lasted a month.) It then became chronic and didn't end fully until he was 13. He was dx'ed with Pandas by myself when he was 9, by a pediatrician when he was ten, and by the NIMH when he was 11. He was too chronic by then for their studies and at the time they were not making any recommendations with regard to abx or IVIG. We had tried the SSRI route but I am pretty sure that in retropect they only worsened things, and I took him off shortly before he went to the NIMH. A sympathetic pediatrician gave him amoxicillin--unfortunately at prophylactic does, not treatment dose, but at least he did not strep again for a very long time.

 

We ended up doing ERP twice a week for two years. This was a major hassle and the "homework" is not really designed to enhance parent child relations--you have to expose your child to the thing that causes major aversion and reward them for not engaging in the compulsion (the tic in this case). But we had no choice. The list of words was enormous--perhaps 100 including impossibly common words like "to" and "do" and all of their homonyms. The whole family developed a parallel language. We did not have parties, we had celebrations. We did not say tissue, we said Kleenex. We did not go to the pool, we went to the swimming place. We did not say pardon, we said sorry. We did not say two, we said double. His tic was to wipe his forehead. He did this so hard he split his skin and bled. Socially, all of this was very hard. He went to summer camp when he was ten and all went fine until the last day when he was in a group of boys waiting for parents to come pick them up. One of them from his school knew words could trigger his tics and showed the other boys and they all joined in sayng the trigger words and watching him tic. One of the junior counsellors was there and participated per the report of another boy in his class who reported it to his mother.

 

I respect your decision to treat this naturally and that choice may be easier for you and your child because he is homeschooled. But if someone had told me there was a fair chance long term abx could make all this go away and relatively quickly, I would have jumped at it, particularly in retrospect and the remembrance of the darkness of the long years dealing with this. Pandas robbed him of all the childhood he remembers. I am on these boards now because he got strep again in college and once again got OCD--but much more classic handwashing etc. He has had to leave college. Just this year he got his tonsils and adenoids out, was put on long-term abx, and had IVIG (last week). He just turned 22, and I am hopeful he'll be able to return to college for spring semester.

 

My two cents: take him to Dr. K, do the antibiotics--give at least a month trial to see if it work, and save up for IVIG in case that is needed. I am linking to two stories.

 

This is from 2002--my son is the second boy.

 

http://miriametucker.com/Does_Strep_Cause_OCD_in_Kid.html

 

This is from 2007 and was written by his ERP therapist. My son is the second boy. (My quibble: we had to do this for two years, not six months and the role of tenex is greatly overplayed. It slowed him down so much we gave it up in two months or so,)

 

http://focus.psychiatryonline.org/article.aspx?articleid=52419

 

 

Ko's Mom

[cobbiemommy]

I have to say that we tried things the natural way, supplements, gluten free, casein free, soy and egg free. We tried cranial sacral therapy and use a wonderful chiropractor. All that being said, none of it was going to get rid of bartonella or strep. My son has improved greatly by adding in the right antibiotics, supporting his immune system, and multiple probiotics to heal his gut. We are starting ERP/CBT this month to help with the residual things. We tried counseling before but it did no good, because his body and mind were not able to take in the information until some of the inflammation had calmed down. I wish you all of the best, be open to all modes of help.