HAVE TO READ THIS - Rages, itching, yeast, etc.

[Caryn]

EAmom,

 

Have you done an OAT test on your PANDAS child? What is your treatment protocol besides long term antibiotics? I am just curious.

 

We did pyroluria testing two years ago, as many of you know. The doctors found our son positive and we have since learned that it is hereditary and other family members have it. We got in touch with a wonderful doctor who is a worldwide expert in the field and he has personally contacted me on several occasions in how to properly treat this condition. He helps our family doctor to work with us and we have had tremendous success treating our son through these means. Our protocol includes an allergy specific diet that is low sugar, organic as possible, non-chemical, and fortified with specific vitamins and minerals based on lab test results. We have learned that our son's condition causes low glutathione levels in addition to low B5, B6, C, Magnesium, and zinc. This, coupled with his gluten intolerance, created the 'perfect storm' during his toddler years-- leaky gut that further depleted nutrient stores and led to brain-related symptoms.

 

I have read Pat's recent post that now she believes her daughter has PITANDS rather than PANDAS. As most of you know, our son tested negative on strep titers 2 1/2 yrs ago and so we never pursued a PANDAS dx even though originally we might have based on his symptoms, the onset of his disease, and various other factors, including much advice we were being given by other parents who had been there. At that time I was really, truly, frightened and my son had several behaviors that were antisocial to say the least.

He was:

1. biting his brother, neighbor kids, playmates
   
2. changing clothes incessantly after each trip to the toilet, up to six times a day
   
3. had insomnia so bad he slept at most 7 hours a night
   
4. had tics so bad he needed to stay home from school for two weeks
   
5. had very poor weight gain
   
6. had inappropriate laughing while being reprimanded at school, so bad that the teacher thought we should consider removing him from the class
   
7. had very poor eating habits, to the point where he only ate about six things, all of which we later learned he was pretty much allergic to
   
8. he had daily rage attacks, to the point where he would get physical with kids/adults, etc...
   
9. had episodes of inconsolable crying, to the point where he would make ME cry
   
10. issues with light sensitivity and screens
    

I was told he had ADHD, that he did not have friends in preschool, that he needed more discipline, less discipline, more encouragement, less toys, more time and affection, less T.V. time, etc., etc., etc......

 

We were living a nightmare to say the least. My kid was chronically getting infections of all kinds-- croup, double ear infections, sinus infections, inexplicable rashes, eczema, strange smelling stools, stools with undigested food, etc.... He had dark circles under his eyes and a big pot belly that was hard to the touch. He was extremely irritable at times and then terribly remorseful afterward. He was so unhappy. He used to tell me that he hated himself. I got to the point where I didn't go places with him anymore because he was so unpredictable. I was afraid of when and where the next tantrum would come from. The kicker came when he pushed a kid down on the tile floor in the bathroom at school because he didn't flush his toilet. This was when we took him out of school for two weeks.

 

The child I took out of school for two weeks 2 1/2 yrs ago no longer exists today. My son has NONE of the above symptoms. He is level headed, calm, peaceful, happy. He reads above his grade level, has friends he plays with regularly-- kids who call to come over, is on sports teams, and is a leader at school that others look up to. He is certainly not perfect, but his sense of humor is an indicator that he has regained his sense of self. He also no longer has tics.

 

I read a long thesis about tics and Tourette Syndrome about a year ago: "Is Gilles de la Tourette’s Syndrome an Autoimmune Disease?" by Pieter Hoekstra. It is 171 pages and really is a MUST read for anyone pursuing a PANDAS dx and looking for a treatment protocol for their child. There is a whole chapter devoted to IVIG.

Though we studied patients with a primary diagnosis of a tic disorder, we did

find a significant effect regarding improvement of obsessive-compulsive

symptoms in the IVIG group. At week six post-treatment, ratings of obsessions

and compulsions had been decreased by 32% in the IVIG group. While this

improvement was maintained over the following 8 weeks, differences between

the IVIG and the placebo group with regard to improvements in obsessions and

compulsions did not reach statistical significance at subsequent assessments.

Also in the study of Perlmutter et al.,16 IVIG appeared to benefit severity of

obsessions and compulsions. Thus, there is some indication that IVIG may improve

obsessions and compulsions. Still, the present results regarding possible

effectiveness of IVIG for symptoms of OCD should be viewed with much caution,

given the fact that obsessions and compulsions were by no means the patients’ main

symptoms. In fact, baseline ratings for OCD symptoms were rather low in our

study and were in the subclinical range. Thus, observed improvements should not

be considered clinically significant. In addition, the between-group difference in

improvement of OCD symptoms at week six post-treatment may have been

primarily related to a floor effect, due to the very low YBOCS baseline ratings in the

placebo group. Future studies should specifically study the effect of IVIG in

patients with different subtypes of OCD, eg pediatric onset versus adult onset

OCD, OCD with tics versus OCD without tics, and OCD with and without

poststreptococcal exacerbations.

Contrary to Perlmutter et al.,16 we found a relatively high placebo response in our

study, with 33% of patients in the placebo group being much or very much

improved at 2 weeks post-treatment. While we do not have an explanation for the

striking lack of placebo effect in the study of Perlmutter et al.,16 the sizeable placebo

response that we encountered, may well explain some of the successes of the case

studies which reported improvement after immune-based therapy,13-15 as well as

some of the effect of the plasma exchange in the study of Perlmutter et al.,16 which

was not placebo-controlled. Thus, future studies should use blinded and wellcontrolled

designs.

In conclusion, based on the present results, we cannot recommend IVIG

treatment for reducing tic severity. Moreover, at present, the use of IVIG in OCD

patients should be confined to placebo-controlled research protocols.

 

We never did antibiotic treatment for our son, or IVIG treatment. One could argue that our son fits the criteria for "PITANDS" as well, based on his onset symptoms and history of chronic infections/illnesses. What Hoekstra argues is the fact that ALL folks with Tourette Syndrome have immune function problems. We went a completely different route than the 'protocol', if you will. So I offer up an alternative viewpoint for folks to ponder. The underlying conditions that are present at dx, in many cases, may mean that the treatment protocol has to be a life long commitment. From what I have learned over time, kids with leaky gut may regress back to the disease state if the original genetic markers (ie: gluten intolerance) are ignored and a return to the original diet and lifestyle resume. In some cases it could take 5-7 years, but the original disease state will resume once adequate damage occurs.

[pmoreno]

Yeh! I am so happy for you Pat! This has been a long time coming! Do you mind listing the exact brand names you are using in probiotics, kefir and omega 3's. I want to go shopping for them. I want to get the right things.

 

Michele

Just to update everyone - it has been 6 days of bliss around here (with just one minor episode of irritability on Thursday evening) - other than that - no complaints of itching - lots of good moods - no repetitive questions or intrusive thoughts, no hitting, kicking, yelling or other aggressive or OCD behavior. I don't want to be premature about this, but this is the longest run of normal behavior that I can remember in a long time, and I'm sure it has to do with getting her yeast & other pathogens under control in her GUT with the probiotics and kefir. We're on a roll and I hope we stay there. Pat

 

Michele, you were asking me about brand names. The Omega 3's - I use one of the 2 most well known - either Nordic Naurals or Barleans (I think as long as they have been molecularly distilled - mercury & other toxins removed - they're OK)

 

As far as probiotics go, the more different strains of bacteria present, the better they are because you don't want an imbalance. The body works best with a greater variety. I am giving the extra dose of the s.boulardii right now because of the yeast and clostridia, but after about 3 months when everything is completely colonized, I will stop giving that particular supplement. The product that I have found that contains a huge variety of probiotics, along with enzymes (which also help break down yeast & help with digestion) and a number of good green foods) is a powder called Essential Greens made by Mother Necessity. I had ordered it online from a website called autismcoach. You start out with a teaspoon a day & can go up to a tablespoon a day. Have to hide it in smoothies, strong juices or food. As far as the brand for s.boulardii, you can get any brand at a health food store - they're all fine. Just keep all probiotics in the fridge.

 

The most important part is the kefir. I use both goat milk kefir (which can be used even by kids who are casein intolerant), it can be bought at places like Whole Foods or other health food stores and young coconut water kefir. If you are interested in how to make it, I wrote a detailed explanation on another post here (I think it was under the topic dealing with rages). You can also google it and get information on how to make it on-line. Most kids aren't crazy about the flavor, but I just add it in with fruit smoothies and they drink it right down - no problem. good luck. Pat

[EAMom]

Have you done an OAT test on your PANDAS child? What is your treatment protocol besides long term antibiotics? I am just curious.

No Oat test. She's on Azith, Advil, probiotics, fish oil (I also add some flax seed meal to her diet), prozac, multi-vit. We haven't pursued a food allergy diagnosis for a few reasons:

 

1) she's very clear cut PANDAS. She'd been a very healthy child prior to FEVER/strep Jan 08. She did have some social anxiety prior to PANDAS but I think that is her temperment (I had a shy streak as a child as well). She had (has) friends and absolutely no behavior issues in school (in fact she was/is always one of the best behaved kids in her class). Prior to March 08 she'd only been on abs 1x in her life. In retrospect, she likely had a instances of low grade PANDAS (urinary, handwashing/anxiety) that correlated with a fever or her sister being sick (neither child had a strep test prior to last year unfortunately). Her severe exacerbation last spring very clearly responded to Advil/Azith. Her mild exacerbations this year were clearly linked to family member having strep (and the one instance where she got fifth's) and exposure to strep in school.

2) her tics were mild and one of the last symptoms to present...so tourettes isn't even a concern

3) our primary issue (even more so than mood/tantrums/ocd) was Anorexia Nervosa (distorted body image, had a big ocd component, acute food refusal, she dropped 15% of her body weight in a 2 week period and she was slender to start with). With this history of an eating disorder I am incredibly head shy about putting any restrictions on what she can eat. Basically, I try to feed her a balanced healthy diet and get enough calcium/protein/healthy fats/fruits (lots organic) etc. into her. She won't eat much in the way of veggies (carrots are okay) and doesn't eat much meat (her choice, I believe mainly due to humitarian concerns). We don't have a lot of junk food in our house but I also want her to have a healthy attitude towards food and not be obsessive things (eg about no sugar etc.) When her PANDAS anorexa nervosa was bad that was one of her fixations..."does this have sugar in it?" Basically, the nutritionist at the eating disorder clinic emphasized "everything in moderation"...and I think this advice makes sense for her (from both a psychological as well as a nutritional standpoint).

 

I read a long thesis about tics and Tourette Syndrome about a year ago: "Is Gilles de la Tourette’s Syndrome an Autoimmune Disease?" by Pieter Hoekstra. It is 171 pages and really is a MUST read for anyone pursuing a PANDAS dx and looking for a treatment protocol for their child. There is a whole chapter devoted to IVIG.

 

From what I could tell, this study was about kids with tourettes/ocd...not PANDAS. Even though the symptoms are similar I most certainly wouldn't expect non-pandas tourettes to to respond to IVIG.

 

The Swedo IVIG/pex study (PANDAS kids) showed that IVIG was indeed helpful (to PANDAS kids).

[dcmom]

EA Mom-

 

It is amazing how my dd's story is so similar. She was always a healthy baby and child. She did/does have some mild social anxiety (shy in new situations, quiet around teachers and other adults, quite outgoing with family and other children). She was growing out of this anxiety, and blooming in kindergarten until pandas hit this Jan (she is 5). She had urinary, ocd, mood, and major food issues and separation anxiety. Once, if she got to school, she had no problems (her teacher was aware and understanding- but never had any issues with dd in school). This went on 4 weeks, we figured it out (no thanks to ped), and she has responded very well to zithromax.

 

Some issues are still hanging on in a much milder form (is this inflammation or does it become habit?)

 

She had 3 bad days last week (higher anxiety, separation issues, and eating less), and I found out her classmate (who she sits next to) was diagnosed with strep. She seems to have bounced back. Do you think her exposure to a child with strep at school would cause some issues?

 

She is on 200mg of zithromax, 2x per week prophylaxis (she is tiny, like 40lbs). I know your dd is on a higher daily dose, do you up it if she is exposed and behaviors increase?

 

I know you are thinking of IVIG- will you wait for an exacerbation?

 

How long do you feel your dd will continue on abx? How old is she? Did she have a T&A?

 

Thank you for all of your posts- it is so helpful to have the experiences of the parents on this forum. If I didn't we would probalbly still be suffering with her on amoxicillin (which wasn't doing it). I have been inspired by this forum not to rest, and settle for what one dr says....

[Caryn]

EAmom,

 

Read the dissertation. It calls PANDAS into question in many regards as a stand alone dx. Much of the data is PANDAS specific in the 171 page document. It can't hurt to read it, even if you unequivocally find yourself in disagreement with it. It is an eye opener to say the least.

 

I highly encourage you to do the food intolerance testing and the OAT testing to see if there isn't a correlation there that you are unaware of. For example, anorexia nervosa has been clinically tied to celiac disease. I also found one study that linked it to OCD. There are many documents that point to schizophrenia and celiac to the point where it is no longer contested. There is also a condition termed 'silent celiac' in which the person has no symptomology at all but still has flattening of the villi upon biopsy and very high antibodies. I am certainly not suggesting that your daughter has celiac, but you cannot assume she does not have issues with yeast, bacteria, or food without proper lab testing to either confirm or disprove your theory.

 

In our instance with our son, tics were also the last symptom to present. He had a host of digestive issues prior to that and behavioral issues too. Antibiotics are used to suppress the immune system. They do not heal it. They mask underlying problems through the act of suppression. That is why long term antibiotics are used to abate the symptoms. The IVIG study I referred to is a classic reason why you need to READ THIS STUDY. They discussed the very fact that the IVIG worked with the PANDAS kids short term, but NOT long term. This was Pat's whole point in her previous post and in her experience with her daughter. It doesn't appear to be a very good long term solution. The problem continues to resurface when this protocol is used in isolation. And let's face it, IVIG is costly.

 

Caryn

[EAMom]

The IVIG study I referred to is a classic reason why you need to READ THIS STUDY. They discussed the very fact that the IVIG worked with the PANDAS kids short term, but NOT long term.

 

Hi Caryn,

 

the IVIG study you referred to (the whole chapter devoted to IVIG...chapter 10) is not about PANDAS kids. Chapter 10 is about an IVIG study on adults and adolescents (mean age 29 years) with longstanding tourettes (who did not meet the diagnostic criteria for PANDAS). These subjects had tics/tourettes as their main problem (and as an interesting note they didn't have a significant amount of OCD). Not surprisingly, the study found that IVIG did not help these adults and adolescents with tourettes (who didn't have PANDAS).

 

In contrast, the 1999 Swedo study (Lancet) of PANDAS children http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf found a long term improvement with a single course of IVIG (or pex) (in fact, the kids were even better off 1 yr post IVIG/pex than they were 1 mo. post IVIG/pex).

 

More than 80% of the patients who received IVIG or plasma exchange remained “much” or “very much” improved at 1 year, and their symptoms were in the

subclinical range of severity. These results are particularly striking when compared with previous reports of the intractable nature of paediatric OCD and tic disorders; long-term outcome studies in OCD have shown that less than one third of patients had clinically meaningful symptom improvements.

 

As a side note.. it doesn't really matter to me if IVIG doesn't do do anything for my dd's tics...they are very mild (when they are present.) OCD (with the anorexia nervosa) is what we are worried about. (I know this isn't true for all PANDAS kids however...some PANDAS kids have severe tics.)

[T_Mom]

EAmom,

 

Read the dissertation. It calls PANDAS into question in many regards as a stand alone dx. Much of the data is PANDAS specific in the 171 page document. It can't hurt to read it, even if you unequivocally find yourself in disagreement with it. It is an eye opener to say the least.

 

I highly encourage you to do the food intolerance testing and the OAT testing to see if there isn't a correlation there that you are unaware of. For example, anorexia nervosa has been clinically tied to celiac disease. I also found one study that linked it to OCD. There are many documents that point to schizophrenia and celiac to the point where it is no longer contested. There is also a condition termed 'silent celiac' in which the person has no symptomology at all but still has flattening of the villi upon biopsy and very high antibodies. I am certainly not suggesting that your daughter has celiac, but you cannot assume she does not have issues with yeast, bacteria, or food without proper lab testing to either confirm or disprove your theory.

 

In our instance with our son, tics were also the last symptom to present. He had a host of digestive issues prior to that and behavioral issues too. Antibiotics are used to suppress the immune system. They do not heal it. They mask underlying problems through the act of suppression. That is why long term antibiotics are used to abate the symptoms. The IVIG study I referred to is a classic reason why you need to READ THIS STUDY. They discussed the very fact that the IVIG worked with the PANDAS kids short term, but NOT long term. This was Pat's whole point in her previous post and in her experience with her daughter. It doesn't appear to be a very good long term solution. The problem continues to resurface when this protocol is used in isolation. And let's face it, IVIG is costly.

 

Caryn

 

Hi Caryn -- I feel like I am going where "angels fear to tread" as these issues are beyond my limited academic knowledge.

 

I wonder however if the real question is where or not there are truly immunological issues in OCD and TS period (i.e., in non-PANDAS type individuals as well...)

 

Hoekstra's work appears to suggest a relationship between infection, immune mechanisms, and resulting neuro-psych issues. He appears to broaden the context for autoimmune issues to include other illnesses such as OCD and stand alone TS.

 

In our case certainly something is amiss when a child (mine) has a sudden onset of severe anorexia (basically OCD), 6 months later sudden-onset regressive severe OCD which ends when treated with antibiotics and steroids.

 

I understand that you are reflecting on Hoekstra's work when you say he makes the case that PANDAS is not necessarily "a stand-alone" diagnosis, as essentially I understand him to be saying that there may be immunological issues in a broader range of illnesses including OCD, TS, etc.

 

Best,

T.Mom

[T_Mom]

Hokestra reference-

 

http://www.ncbi.nlm.nih.gov/pubmed/16401548

[Caryn]

Hi Caryn -- I feel like I am going where "angels fear to tread" as these issues are beyond my limited academic knowledge.

 

I wonder however if the real question is where or not there are truly immunological issues in OCD and TS period (i.e., in non-PANDAS type individuals as well...)

 

Hoekstra's work appears to suggest a relationship between infection, immune mechanisms, and resulting neuro-psych issues. He appears to broaden the context for autoimmune issues to include other illnesses such as OCD and stand alone TS.

 

In our case certainly something is amiss when a child (mine) has a sudden onset of severe anorexia (basically OCD), 6 months later sudden-onset regressive severe OCD which ends when treated with antibiotics and steroids.

 

I understand that you are reflecting on Hoekstra's work when you say he makes the case that PANDAS is not necessarily "a stand-alone" diagnosis, as essentially I understand him to be saying that there may be immunological issues in a broader range of illnesses including OCD, TS, etc.

 

Best,

T.Mom

 

Yes, that is exactly my thinking. In essence, it is all the one, so to speak. We know there is not a 'one treatment fits all' scenario here, but I do believe there is much overlap between the Tics/OCD/Pandas/Pitands/T.S. diagnoses and each child deserves testing in as many areas as possible to determine a multitude of possible treatment options available-- above and beyond what is specifically designated for a particular label-- in unison, rather in isolation. I have always said my son is not PANDAS. His condition is definitely immunologically motivated. Right now his immune system is very strong (he hasn't been sick at all this year) and he is completely tic fee and has no signs of OCD or ADHD. Kim has often written about the sulfation system and Carolyn.N has written at length about n-acetyl-cysteine. We recently did OAT testing and learned about a glutathione deficiency being tied to pyroluria. Wow, the lightbulb really went on when I began to research that. Glutathione is necessary for proper immune function. I am going to step out on a ledge here and suggest that maybe treating the strep in isolation (ie: antibiotics/steroid burst/IVIG) is an act of futility in the sense that it is acting as a gerbil does when it spins inside a wheel. Stop the treatment and the symptoms start. There is no healing of the immune system when this is the only treatment protocol used. Test for the deficiencies, find the underlying problem in the sulfation system (whatever it may be-- we all have different triggers) and ultimately stop the reoccurring infections and no longer need the gerbil wheel in the future.

[dcmom]

Okay, I am new to pandas, and this is all a little overwhelming.

 

DD has always been healthy, until this recent strep/ pandas. However she has always (from before age 1) had chronic constipation. I am thinking maybe I should have the OAT testing done at some point. I would like to hit this problem from every possible angle...

 

Can you tell me what exactly is the oat test (I assume a blood draw, how many vials)? What are they testing for (food allergies?)? Where can I get it (a DAN?)? And is it usually covered by insurance? If not, what is the cost?

 

I know the GI can test for celiac, would that be a good place to start?

[Suzan]

Yes, that is exactly my thinking. In essence, it is all the one, so to speak. We know there is not a 'one treatment fits all' scenario here, but I do believe there is much overlap between the Tics/OCD/Pandas/Pitands/T.S. diagnoses and each child deserves testing in as many areas as possible to determine a multitude of possible treatment options available-- above and beyond what is specifically designated for a particular label-- in unison, rather in isolation. I have always said my son is not PANDAS. His condition is definitely immunologically motivated. Right now his immune system is very strong (he hasn't been sick at all this year) and he is completely tic fee and has no signs of OCD or ADHD. Kim has often written about the sulfation system and Carolyn.N has written at length about n-acetyl-cysteine. We recently did OAT testing and learned about a glutathione deficiency being tied to pyroluria. Wow, the lightbulb really went on when I began to research that. Glutathione is necessary for proper immune function. I am going to step out on a ledge here and suggest that maybe treating the strep in isolation (ie: antibiotics/steroid burst/IVIG) is an act of futility in the sense that it is acting as a gerbil does when it spins inside a wheel. Stop the treatment and the symptoms start. There is no healing of the immune system when this is the only treatment protocol used. Test for the deficiencies, find the underlying problem in the sulfation system (whatever it may be-- we all have different triggers) and ultimately stop the reoccurring infections and no longer need the gerbil wheel in the future.

 

Hi Caryn, I agree with you regarding finding the underlying issues.... I have found so many things with my two girls, candida, malabsorbtion, gluten intolerance, dairy allergy, adhd.... PANDAS scares me since we don't know what causes it. If PANDAS really is causing my girls issues, then what? Or is something causing the PANDAS, if they have it? They are on so many supplements to support their system, some issues get better, others don't, others appear, others disappear. I feel like I'm on a roller coaster and it slows down but we never get a break. I'm going broke from the testing, doctor's bills, supplements, medicine, but it's all worth it to help support their system and help them cope. With my 6 yr old, I thought gluten intolerance was our miracle we were looking for last year. But she's still not growing, still not gaining weight, still impulsive but so many things have improved too. Who knows what she'd be like if I had not been doing all this for her for the past 3 years when we first started occupational therapy and then just kept on searching.

 

Anyway, I don't know what I'm saying. I'm just having a little panic attack....

[Suzan]

Okay, I am new to pandas, and this is all a little overwhelming.

 

DD has always been healthy, until this recent strep/ pandas. However she has always (from before age 1) had chronic constipation. I am thinking maybe I should have the OAT testing done at some point. I would like to hit this problem from every possible angle...

 

Can you tell me what exactly is the oat test (I assume a blood draw, how many vials)? What are they testing for (food allergies?)? Where can I get it (a DAN?)? And is it usually covered by insurance? If not, what is the cost?

 

I know the GI can test for celiac, would that be a good place to start?

 

Hi, Our Dan! doctor ordered the OAT for us. The full OAT is a stool and urine sample I think (we also did a comprehensive stool test so the OAT may just be urine). Check out their website for more information at http://www.greatplainslaboratory.com/home/ . My insurance did not cover it so with 2 girls it would really add up. There is a price list on the website too. This test really helped us to uncover many of dd's issues and get her the nutritional support she needed. I highly recommend the test for just about everyone actually!

 

Good luck!

 

susan

[pmoreno]

I know that there is some debate here about the difference in treating PANDAS, TS, OCD, PITANDS, etc. Certainly if you can prove that your child reacts to strep, it would help to start with antibiotics, but you can't continue that forever. The IVIG helps tremendously (short term) and may help some kids long term, but that hasn't been proven clinically and would be difficult to prove because there are so many other factors - ie., were bio-medical treatments used simultaneously, antibiotics, a decrease in exposure to strep, changes with age and hormone levels. It's really hard to isolate these factors.

 

All of the above conditions are immune related and it makes sense that many different antigens (strep, viruses, other bacteria, yeast, environmental toxins, metals) can disrupt normal immune function and can cause an autoimmune response. IVIG can settle down an overactive immune response, but it may not always change what caused that abnormal response in the first place.

As I've said before, 70% of the immune system is housed in the gut, and I believe you have to start there to make sure that everything is functioning well. I can only tell you what I've experienced with my daughter on a short term basis since I've started some of the pro-biotics and the kefir (hopefully I'll be able to report some positive changes in the long run). I can tell you this. She caught a cold yesterday. I gave her extra vitamin C (5,000mg) yesterday and today. Today she was congested and I saw some intrusive thoughts (but just a few). She is handling this much better than she would have in the past. I really attribute this to the probiotics & kefir - I think it's helping to modulate her immune system. Pat

[T_Mom]

I just have to add one more thought tonight--I know full well that less than a year ago, I did not have time to sit and think about these issues as for about a month my daughter had, what looked like, full blown psychosis--OCD that was crippling, etc. etc. Make that "sudden onset" severe regressive OCD. We wondered if some terrible thing had happened to her it was so sudden and out of the blue. For about two weeks it was full-assist, in that we had to carry her, feed her, dress her, etc. She felt so strongly the OCD was telling her not to do things. Out of the blue (except for a probable "related" case of sinusitis which showed up on the MRI.)

 

Now, I believe this was basically brain inflammation--(remember Dr. ELIA in the news clip?...) and the idea is that basal ganglia is inflamed as in Sydenhams Chorea--and all that may lead to...

 

* This did not show up prior to age 9. It goes away with antibiotics. It goes away with steroid treatments. It is inflammation caused by something.

IF this was a systemic malformation, or misinterpretation of the foods she was eating, then I wonder wouldn't it have shown up earlier? If it is caused by strep lurking, the secret culprit, or some other cause of inflammation (autoimmune, etc.) then perhaps antibiotics will treat and remediate, give the body a chance to heal, the brain cells to stabilize again--via quelling the inflammation. What of those antineuronal antibodies? They are indicating the body is fighting off something--why not help it? Evening ramblings--It is good to have the time to be able to think about these things.

[pmoreno]

I just have to add one more thought tonight--I know full well that less than a year ago, I did not have time to sit and think about these issues as for about a month my daughter had, what looked like, full blown psychosis--OCD that was crippling, etc. etc. Make that "sudden onset" severe regressive OCD. We wondered if some terrible thing had happened to her it was so sudden and out of the blue. For about two weeks it was full-assist, in that we had to carry her, feed her, dress her, etc. She felt so strongly the OCD was telling her not to do things. Out of the blue (except for a probable "related" case of sinusitis which showed up on the MRI.)

 

Now, I believe this was basically brain inflammation--(remember Dr. ELIA in the news clip?...) and the idea is that basal ganglia is inflamed as in Sydenhams Chorea--and all that may lead to...

 

* This did not show up prior to age 9. It goes away with antibiotics. It goes away with steroid treatments. It is inflammation caused by something.

IF this was a systemic malformation, or misinterpretation of the foods she was eating, then I wonder wouldn't it have shown up earlier? If it is caused by strep lurking, the secret culprit, or some other cause of inflammation (autoimmune, etc.) then perhaps antibiotics will treat and remediate, give the body a chance to heal, the brain cells to stabilize again--via quelling the inflammation. What of those antineuronal antibodies? They are indicating the body is fighting off something--why not help it? Evening ramblings--It is good to have the time to be able to think about these things.

 

 

T.Mom - you're right - problem is the inflammation and if it's from strep or some other bacteria, then antibiotics should take care of it - nothing wrong with that. However, if the inflammation comes from a virus or a fungus (like yeast or parasites), then all the antibiotics in the world are not going to help that. If you're lucky enough to isolate the cause of inflammation - that you can prove it was strep and treat it with abx - then you get a good response. Otherwise, you're left to wonder which organism is causing the inflammation and you have to do trial and error. Sometimes it is strep, you treat with antibiotics - everything gets better for a while - then even on the antibiotics things get bad again. Parents think the antibiotics aren't working anymore & sometimes switch antibiotics. What could be happening is that if there was bacteria present initially the antibiotic did its work, you saw improvement in symptoms, but after a while the antibiotic itself caused some imbalance in the gut flora and the symptoms you saw later had to do with yeast overgrowth or clostridia overgrowth.

 

I'm not saying - don't do antibiotics - if you have a proven infection, its necessary. I'm not saying - don't do IVIG - it can give you some immediate abatement of inflammation and symptoms. But, even while you're doing these things (and some parents can't afford the IVIG), why not try the easiest and simplest method for immune support (which would come from probiotics or kefir in particular). You mentioned something about - if food related - why wouldn't that have shown up earlier with your child. It may not be food related. The reason that some people have success with GF/CF diets is not always because their children were allergic to these foods in the first place. It's because once they have immune issues caused by something going on in the gut, they can have more problems with digesting foods that contain casein and gluten.

 

You wouldn't necessarily know if your child has a GI problem unless you tested for it specifically. There are tests for leaky gut syndrome, for gluten & casein sensitivity (but when you test you can't have been off gluten & casein or it will come up negative anyway), tests for yeast or bacteria overgrowth. A lot of the kids that suddenly display PANDAs symptoms have had a pretty normal development prior to that. What is speculated is that there is some genetic predisposition for some GI disturbance that may lay dormant for some time until triggered - sometimes by a certain virus or bacteria or environmental factors. The trigger is probably different for many of the kids. I may be wrong, but I tend to think that what really set my daughter off the very first time is that she ate an overabundance of halloween candy (and I mean she ate a lot) in one night and it was one day later that she contracted the virus that started all this in motion. The candy contained a ton of refined sugar and it was probably too much for her system to process. I've read that more and more people (especially in developed nations like ours) that eat a lot of processed foods with lots of sugar, junk food, preservatives, artificial colors and flavors are having increasing problems with their immune systems. If you look at any of the third world countries, you most likely will not find any cases of Pandas and very few autoimmune diseases.