Please help me understand

[swim]

I've been reading posts on this site for over a year and am thankful to everyone for the info and helping us to feel that we are not alone in all of this. A few days ago, it felt like the wind was knocked out of us and I am trying to understand.

 

We've been dealing with PANDAS in our older son(11 yrs old now) for about 6 years. Two weeks ago, we saw an increase in PANDAS symptoms and headed to the doc. Blood work showed no recent step or other infections, but increasing keflex dosage improved his symptoms in about 2 days. There must have been some sort of infection, but have no idea what is was as he was not sick.

 

About a week ago, our younger son (8 yrs old) started showing PANDAS signs for the first time ever. Our hearts sank and sorry to say we could not admit this was happening. Today, we admit it and will be headed to the doctor tomorrow. Problem is, he has not been sick and I can't imagine what blood work will show. I feel crazy, but he is starting just like our older son started 6 years ago. I find it odd that older son had increase in symptoms 2 weeks ago without being sick and now younger son is showing symptoms for first time and did not have any sick symptoms. What is going on?

 

I see that many people on this site have multiple children with PANDAS and I am trying to understand. What is the theory on this? Is there some genetic cause, are there particular strains that cause this, or is it some combination of variables? How can something that seems rare happen to more than one child in a family? Any help would be appreciated. Thanks!

[lyme_mom]

I've been reading posts on this site for over a year and am thankful to everyone for the info and helping us to feel that we are not alone in all of this. A few days ago, it felt like the wind was knocked out of us and I am trying to understand.

 

We've been dealing with PANDAS in our older son(11 yrs old now) for about 6 years. Two weeks ago, we saw an increase in PANDAS symptoms and headed to the doc. Blood work showed no recent step or other infections, but increasing keflex dosage improved his symptoms in about 2 days. There must have been some sort of infection, but have no idea what is was as he was not sick.

 

About a week ago, our younger son (8 yrs old) started showing PANDAS signs for the first time ever. Our hearts sank and sorry to say we could not admit this was happening. Today, we admit it and will be headed to the doctor tomorrow. Problem is, he has not been sick and I can't imagine what blood work will show. I feel crazy, but he is starting just like our older son started 6 years ago. I find it odd that older son had increase in symptoms 2 weeks ago without being sick and now younger son is showing symptoms for first time and did not have any sick symptoms. What is going on?

 

I see that many people on this site have multiple children with PANDAS and I am trying to understand. What is the theory on this? Is there some genetic cause, are there particular strains that cause this, or is it some combination of variables? How can something that seems rare happen to more than one child in a family? Any help would be appreciated. Thanks!

 

There are other infections that can cause these symptoms besides strep and most non lyme specialist doctors do not know how to test for them. See my other posts about lyme and related illnesses. The treatment for lyme is antibiotics and it is common for multiple children to have lyme b/c they play in the same place and can be bitten by the same lyme infected ticks. Here is an article about the other infections that can cause pandas:

 

http://www.psychiatrictimes.com/display/article/10168/55056

[faith]

lyme mom,

thank you for this. I do have some other questions for you, but just wanted to copy a few paragraphs from the article you linked here, as it kind of ties into a thread discussion we had a little while back about 'microbes' and how they play into all this, especially when some of our kids don't have a particularly strong link to strep as the catalyst. I'm going to copy this on that thread as well, its kind of an interesting discussion and maybe you might like to read it over. The last paragraph here that I bolded seems to reiterate what I kind of believe, that these microbes have an influence here, perhaps an initial assault, coupled with genetics, predisposition, environmental assaults, etc., which creates a susceptability in certain individuals. I think all these factors are why many doctors don't really have a handle on what the main cause is, because there really isn't a 'main' cause, its a combination of things. I want desperately to understand all this, I think I have a small handle on it, but then at a certain point, it all falls to pieces, I can only go so far. I'd certainly like to hear more of anything you know regarding lyme and 'other' possibilities causing these symptoms in our kids.

 

could you tell us how lyme was diagnosed of found in your child and what the symtoms were? is that your experience? sorry, not clear on your story. thanks......Faith

 

 

The causes of most psychiatric illnesses are unknown. The catecholamine hypothesis does not adequately explain the cause of abnormal neurotransmitter functioning. Mendel stated that human traits are determined by individual genes that function independently of other genes and environmental influences. Koch believed that many human diseases are caused by microbes that exert their effect independently of other microbes, environmental factors, and genes. The cause of most mental illnesses cannot be explained by neurotransmitters, genes, or infections alone. Instead, as stated by Yolken,8

 

most common human diseases are caused by the interaction of environmental insults and susceptibility genes.Many of the susceptibility genes are diverse determinants of human response to environmental factors, including infections, and prevention or treatment of the infections may result in the effective treatment of complex disorders.

 

Neuropsychiatric disease is often associated with an interaction of environmental insults and susceptibility factors that frequently results in a pathological interaction including inflammation, oxidative stress, mitochondrial dysfunction, and excitotoxicity, which leads to neuronal dysfunction

[EAMom]

We've been dealing with PANDAS in our older son(11 yrs old now) for about 6 years. Two weeks ago, we saw an increase in PANDAS symptoms and headed to the doc. Blood work showed no recent step or other infections, but increasing keflex dosage improved his symptoms in about 2 days. There must have been some sort of infection, but have no idea what is was as he was not sick.

Did they do a throat culture or just bloodwork?

 

About a week ago, our younger son (8 yrs old) started showing PANDAS signs for the first time ever. Our hearts sank and sorry to say we could not admit this was happening. Today, we admit it and will be headed to the doctor tomorrow. Problem is, he has not been sick and I can't imagine what blood work will show. I feel crazy, but he is starting just like our older son started 6 years ago. I find it odd that older son had increase in symptoms 2 weeks ago without being sick and now younger son is showing symptoms for first time and did not have any sick symptoms. What is going on?

 

Definitely do a throat culture. Many kids get strep with no symptoms other than behavioral issues (or tics or urinary frequency). In other words, these kids have no sore throat, no fever. Do the 72 hour cutlure if the rapid is negative. I would also culture other family members (esp. siblings, but grown-ups can get strep too).

 

You could consider strep titers if the cultures are negative. The problem is that some kids with strep don't get titer elevations and some kids get elevations but you won't see it if you draw blood too soon or too late after the infection.

 

What symptoms does your younger son have?

 

I see that many people on this site have multiple children with PANDAS and I am trying to understand. What is the theory on this? Is there some genetic cause, are there particular strains that cause this, or is it some combination of variables? How can something that seems rare happen to more than one child in a family? Any help would be appreciated. Thanks!

 

Yes, there is probably a combination of genetics and also that kids within a family would be exposed to the same strains of strep.

[EAMom]

This flow chart might help. http://www.latitudes.org/forums/index.php?...art=#entry52997

[dcmom]

swim-

 

Words cannot express my sympathy. We are going through this ourselves now. My younger dd had an acute overnight onset of pandas last year. We have now come to realize that her older sister, 9, has also been suffering with pandas, although milder. It was so hard with the first child, but I have to say in some ways with the second child- it feels harder. It just takes the wind out of you completely. I feel like I have been punched in the stomach daily.

 

I have to tell you, you are not alone. There are many of us who have two kids with pandas on this board. Most that I have talked to have the same experience of kids ramping up at the same time. Mine seem to.

 

The good news is, maybe you have caught your younger son early. Maybe you can get him on high dose antibiotics and a steroid burst and see fantastic and long lasting results.

 

Do you have a good pandas doc?

 

My heart goes out to you.

 

It is really tough having two kids showing symptoms at the same time...

[swim]

Did they do a throat culture or just bloodwork?

 

They did a throat culture and the blood work. The rapid and the 72 hour strep tests were negative. This is the first time we have seen an increase in symptoms without positive strep tests, but I am VERY grateful the increase in keflex brought symptoms under control in about 2 days.

 

About a week ago, our younger son (8 yrs old) started showing PANDAS signs for the first time ever. Our hearts sank and sorry to say we could not admit this was happening. Today, we admit it and will be headed to the doctor tomorrow. Problem is, he has not been sick and I can't imagine what blood work will show. I feel crazy, but he is starting just like our older son started 6 years ago. I find it odd that older son had increase in symptoms 2 weeks ago without being sick and now younger son is showing symptoms for first time and did not have any sick symptoms. What is going on?

 

Definitely do a throat culture. Many kids get strep with no symptoms other than behavioral issues (or tics or urinary frequency). In other words, these kids have no sore throat, no fever. Do the 72 hour cutlure if the rapid is negative. I would also culture other family members (esp. siblings, but grown-ups can get strep too).

 

You could consider strep titers if the cultures are negative. The problem is that some kids with strep don't get titer elevations and some kids get elevations but you won't see it if you draw blood too soon or too late after the infection.

 

What symptoms does your younger son have?

 

Our younger son is showing the same tics that our older son showed when he first started with PANDAS symptoms. We have not seen any ODC so far and are hoping to get it under control before we see any.

 

We will do the throat culture and I think we will also ask for the strep titers. I am wondering if our younger could be a carrier.

[swim]

dcmom - Thank you for your reply and I am sorry to hear you are in the same boat. I know the "punched in the stomach" feeling - have been feeling it all weekend.

 

Our pedicatrician has 3 or 4 other PANDAS patients and is willing to work with us, so we are very lucky there. We are hoping to get the younger one on a high dose of antibiotics tomorrow after a visit to the doc. Our doc didn't want to do steroid bursts with our older son, but we are able to get him pretty stable after symptom increases with just antibiotics. I know we are very lucky there. I don't think she will want to do steroids with the younger one, but maybe the high dose antibiotics will work.

 

Good luck to you - reading this site, I know we will all get through this, but I just need to be reminded sometimes. I look forward to the day when we have more answers on what triggers this, but it seems to be an unlucky combination of factors.

[EAMom]

Our younger son is showing the same tics that our older son showed when he first started with PANDAS symptoms. We have not seen any ODC so far and are hoping to get it under control before we see any.

 

We will do the throat culture and I think we will also ask for the strep titers. I am wondering if our younger could be a carrier.

 

Possibly...lots of PANDAS kids might be considered "carriers"...in which case Azithromycin might be a good antibiotic choice.

[lyme_mom]

lyme mom,

thank you for this. I do have some other questions for you, but just wanted to copy a few paragraphs from the article you linked here, as it kind of ties into a thread discussion we had a little while back about 'microbes' and how they play into all this, especially when some of our kids don't have a particularly strong link to strep as the catalyst. I'm going to copy this on that thread as well, its kind of an interesting discussion and maybe you might like to read it over. The last paragraph here that I bolded seems to reiterate what I kind of believe, that these microbes have an influence here, perhaps an initial assault, coupled with genetics, predisposition, environmental assaults, etc., which creates a susceptability in certain individuals. I think all these factors are why many doctors don't really have a handle on what the main cause is, because there really isn't a 'main' cause, its a combination of things. I want desperately to understand all this, I think I have a small handle on it, but then at a certain point, it all falls to pieces, I can only go so far. I'd certainly like to hear more of anything you know regarding lyme and 'other' possibilities causing these symptoms in our kids.

 

could you tell us how lyme was diagnosed of found in your child and what the symtoms were? is that your experience? sorry, not clear on your story. thanks......Faith

 

 

The causes of most psychiatric illnesses are unknown. The catecholamine hypothesis does not adequately explain the cause of abnormal neurotransmitter functioning. Mendel stated that human traits are determined by individual genes that function independently of other genes and environmental influences. Koch believed that many human diseases are caused by microbes that exert their effect independently of other microbes, environmental factors, and genes. The cause of most mental illnesses cannot be explained by neurotransmitters, genes, or infections alone. Instead, as stated by Yolken,8

 

most common human diseases are caused by the interaction of environmental insults and susceptibility genes.Many of the susceptibility genes are diverse determinants of human response to environmental factors, including infections, and prevention or treatment of the infections may result in the effective treatment of complex disorders.

 

Neuropsychiatric disease is often associated with an interaction of environmental insults and susceptibility factors that frequently results in a pathological interaction including inflammation, oxidative stress, mitochondrial dysfunction, and excitotoxicity, which leads to neuronal dysfunction

 

Faith,

 

Lyme Disease is the fastest growing infectious disease next to AIDS. Once thought to be limited to the Northeastern United States, Lyme and related tick illnesses are now coast to coast and it is expected to continually increase. There are few predators that eat the ticks and more and more ticks are infected with these microbes. Lyme is a spirochete like syphilis and it can cause multi-system illness, including the full range of psychiatric problems. Testing is not reliable and is only based on antibodies. Problem is lyme sometimes disables the immune system so you don't produce antibodies (but you still can have lyme). Also, there are like 200 strains of lyme and the test only tests for one or maybe two strains. For some crazy reason the tests that are covered by insurance (ELISA and Western blots) do not test for band 31 or 34, two of the most important markers for lyme. They wanted to create a vaccine based on these antibodies and figured everyone would be exposed to them through the vaccine. However, they pulled the vaccine off the market in 2001 but they never added bands 31 and 34 back to the test. This means you could be positive for lyme and get a negative result. In order to test for all known lyme antibodies you need to pay out of pocket for a test from Igenex Labs in CA or Clongen Labs in Gaithersburg. If you have any lyme-specific antibodies and you have lyme symptoms you might want to get treated for lyme. To further complicate the situation there are all kinds of other diseases that you can get from a tick that make lyme much harder to treat such as Bartonella, Babesia, Erlichia, Mycoplasma P. and others. The testing for these diseases is also not reliable. Igenex and Specialty Labs (Los Angeles, CA) offer a number of tests for co-infections.

I didn't know anything about Lyme before my son was diagnosed with it. He developed Bells Palsy (the right side of his face was paralyzed) on Father's 2008. As I learned about lyme I couldn't believe that I was not aware of how to protect my kids from it and how to spot the symptoms. I also realized that my son had had lyme five months earlier when I brought him to the doctor complaining of headaches, sensitivity to noise and irritability. My pediatrician dismissed the headaches saying "don't worry about them unless they are incapacitating." I know that sounds really stupid now but at the time I figured he knew better.

I got great advice from a naturopath the week my son got Bells Palsy. She said "get the whole family tested, find a lyme specialist and get the longest, highest dose of antibiotics you can get to kill it." I knew it was bad when a naturopath tells you to get all the drugs you can get! Within weeks we learned that we all had antibodies through the Igenex Western blot test (igg and igm). Now having antibodies doesn't mean you are sick but when my daughter started complaining that her ankles and her knees hurt, we knew it was lyme. Then I started getting migrating or surfing pain that went from one joint to the next. I watched my other son like a hawk and when he complained that his hip hurt and he acted a little tired the doctor started treating him too, just to be safe. You do not need to see the tick or have a tell tale bulls eye rash to have Lyme Disease. Thats a myth. None of us had either.

To make a long story shorter several of us had to be treated for other infections too along the way (Babesia and Bartonella). This was based on the symptoms, not the test results. My oldest had to be on a picc line all summer so he could get IV doses of antibiotics which cross the blood brain barrier. It was kind of a nightmare. We consulted the top lyme pediatrician in the world and we have an excellent lyme MD who is an integrative physician locally. Everyone is better except for my son who had the Bells Palsy. He still has some symptoms and is still on the medication, after 18 months. Last week he developed a rash across his chest that looked like scratches and it was the first definitive proof that he has Bartonella (aka Cat Scratch Disease) in spite of the fact that his bartonella tests were negative repeatedly. The lyme doctors interpret this as a good sign that the Bartonella is finally being killed. He has had some herxheimer reactions (exacerbated symptoms due to the toxins released during the die off). Other than that he is doing pretty well and it doesn't interfere with school or other activities.

Lyme is the great imitator and is often mistaken for other illnesses (MS, ALS, etc.). Knowing what I know about how hard it is to know if you have one of these illnesses, it seems to me that any parent of a child with PANDAS needs to know how to get their child fully evaluated for these illnesses. All children recover from lyme with the proper treatment, according to Dr. Charles Ray Jones, (New Haven, CN) the top lyme pediatrician in the world. He has been treating lyme in kids for about 40 years and he has had over 15,000 patients. The best doctors for diagnosing and treating tick-borne illnesses are members of ilads.org (International Lyme and Associated Diseases Society based in Bethesda, MD). Cure Unknown by Pamela Weintraub is an excellent and gripping book about lyme. Under our Skin is a documentary about lyme that is up for an Academy Award. You can google both. Also, Dr. Kenneth Boch has a book that talks a lot about PANDAS. Its called Healing the Epidemic of Childhood Disorders: Autism, ADHD, Allergy and Asthma. He and his brother, Dr. Stephen Bock, are really knowledgeable about all these things that can affect the brain (viruses, bacteria, yeast, etc.). Dr. Stephen Bock is a lyme specialist and member of ilads. They work together at the Rhinebeck Health Center in NY.

So, it is common for people to have lyme and other tick illnesses for years and not know it. If I only my doctor or I knew that my son's symptoms could have been lyme, my so would have been spared this long drawn out treatment!

[Suzan]

lyme mom, really great post about lyme, thank you. I was wanting some of that info too. I went out after and was reading more tonight. I've read up on lyme in the past and felt like it was not my daughters. But tonight, I read something about the bulls eye rash where it was commonly mistaken for a spider bite and I was brought back to a time where my daughters did have a rash like this that I assumed was a spider bite. I honestly can't remember now which daughter it was or if it was both.

 

So that brings me to my question which is, if you are already on full dose, long term antibiotics, is it important (or even possible) to find out if they had lyme?

 

Thanks,

 

Susan

[lyme_mom]

lyme mom, really great post about lyme, thank you. I was wanting some of that info too. I went out after and was reading more tonight. I've read up on lyme in the past and felt like it was not my daughters. But tonight, I read something about the bulls eye rash where it was commonly mistaken for a spider bite and I was brought back to a time where my daughters did have a rash like this that I assumed was a spider bite. I honestly can't remember now which daughter it was or if it was both.

 

So that brings me to my question which is, if you are already on full dose, long term antibiotics, is it important (or even possible) to find out if they had lyme?

 

Thanks,

 

Susan

Susan,

It would be important to test for lyme if any of your kids have symptoms because they could still have lyme and require treatment. There are very specific antibiotics used for lyme and it is hard to kill. Ilads.org or the Lyme Disease Association has a list of the many different symptoms that could be a sign of lyme. You should read the list and see what you think. The most helpful thing I read was the book Cure Unknown b/c you hear about all these families who had multiple children sick and what their symptoms were. It helped me understand what it looks like b/c I had to watch my kids for symptoms.

 

You also need at least two antibiotics to kill lyme: one like amoxicillin (for younger children) or doxycyclene PLUS a broad spectrum antibiotic like azithromycin to kill lyme when it tries to hide in your tissues. They work together to corner the spirochete and keep it from hiding out in the body. In the case of CNS involvement sometimes IV antibiotics are necessary to kill the bacteria, as was the case for my son. Lyme actually changes its shape in the body to evade detection and treatment. This is why so many people cannot get rid of lyme. This coupled with the fact that most doctors do not know how to diagnose or treat it (much less the numerous possible coinfections) it is no wonder so many never get well. Many lyme patients don't get a high enough or long enough dose of antibiotics and the lyme just comes out after they go off the drugs. Keep in mind that the symptoms can be very subtle but over time they will get worse. Lyme cycles-symptoms come and go so it makes you think there is nothing really wrong. One last thing, if you have a coinfection like bartonella or Babesia you cannot get rid of lyme without also treating the coinfection.

[dut]

Lyme mom - do you know if kids with lyme have exacerbations in response to illness. For example, can a child go for over half a year and be symptom free and then have a flare of symptoms following an illness such as an upset tummy or the flu? or does lyme cycle more quickly than that and flare without obvious triggers?

 

thanks

[lyme_mom]

Lyme mom - do you know if kids with lyme have exacerbations in response to illness. For example, can a child go for over half a year and be symptom free and then have a flare of symptoms following an illness such as an upset tummy or the flu? or does lyme cycle more quickly than that and flare without obvious triggers?

 

thanks

Yes it can. It varies from person to person. Lyme moves in the body very slowly-everywhere from every few weeks to years later. I met a child who is so sick and she is 11. She wasn't properly treated when she was 4 and over the years she developed all sorts of medical issues. The doctors told her mother it couldn't be lyme. They told her she was depressed, ocd, add, etc. Now she knows she has lyme and she is SO sick. It will take years to get her well. You have to kill it while it is multiplying/moving apparently, thus the long term antibiotics. They say that illness or stress can cause it to come out if it is not properly treated. Puberty, menopause can be times when it rears its ugly head they say.

[Worried_Dad]

Okay, this thread is scaring me. Lyme Mom, I'd value your input on something.

 

I know there's a lot of symptom overlap between Lyme and PANDAS. The DAN doc who originally diagnosed our son happened to be a certified Lyme specialist and suspected Lyme. He did a Lyme test (sent it to a lab somewhere, but I don't recall the location or if it was one of the ones you mentioned) and it came back indeterminate. I think it was 115 and the doc said anything below 100 is definitely Lyme, but numbers above 100 don't rule it out. Then our son's ASO titer came back elevated and he diagnosed acute rheumatic fever with Sydenham's chorea, which later changed to PANDAS.

 

Our son had the joint pain you mentioned that moved from joint to joint. That "migratory polyarthritis" happens to be a classic symptom of ARF, so we always attributed it to that. And our son has finally started to improve on the Saving Sammy dose of augmentin XR, but it sounds like that is one of the abx used for Lyme (but not the co-infections)?

 

So at some point, someone told us we could be sure our son had PANDAS rather than Lyme because he had overnight symptom explosions (OCD, tics, lability, etc.), and that Lyme's neuropsych symptoms come on more gradually. (Maybe because Lyme bacteria move very slowly in the body, as you mention below?) Is this correct? Would rapid onset be (in general) a differentiator between PANDAS and Lyme disease?

 

As I was reading your post, I was second-guessing our approach, wondering if that's why our son needed such a high dose of augmentin XR for such a long duration (4 months so far) to make steady progress? The Lyme specialist who originally diagnosed our son passed away, so we don't have his expertise available locally anymore. He seemed sure that it was PANDAS rather than Lyme... but I'm very paranoid. After 3 years of this, I don't want to see our son lose the progress he's making because we didn't attack all the underlying infections!

 

I'm hoping you'll tell me to chill, and that I'm being paranoid for no good reason. Please tell me that?!?

 

 

Lyme mom - do you know if kids with lyme have exacerbations in response to illness. For example, can a child go for over half a year and be symptom free and then have a flare of symptoms following an illness such as an upset tummy or the flu? or does lyme cycle more quickly than that and flare without obvious triggers?

 

thanks

Yes it can. It varies from person to person. Lyme moves in the body very slowly-everywhere from every few weeks to years later. I met a child who is so sick and she is 11. She wasn't properly treated when she was 4 and over the years she developed all sorts of medical issues. The doctors told her mother it couldn't be lyme. They told her she was depressed, ocd, add, etc. Now she knows she has lyme and she is SO sick. It will take years to get her well. You have to kill it while it is multiplying/moving apparently, thus the long term antibiotics. They say that illness or stress can cause it to come out if it is not properly treated. Puberty, menopause can be times when it rears its ugly head they say.