OMG- Just got our CAM back

[SSS]

Holy Moly, my heart is beating wildly.

My poor girl, who I've been trying to help and figure out for years.

Wow.

I have a call into our DAN! for an appt. and forwarded him the test results.

We've been on Azith. and ibuprofen for 30 days...

We are backsliding. I wonder if the next step is a steroid.

She was exposed to active strep as an infant. Followed by head growth jumping the chart, and unexplained fevers...nothing ever confirmed.

Age 2 1/2 documented strep.

Things went 'bad' from there.

I'm shaking.

I truly cannot thank the members here enough.

Sarah &

Samantha 5

[butterflymom]

=

Edited February 3, 2016 by butterflymom

[lyme_mom]

Holy Moly, my heart is beating wildly.

My poor girl, who I've been trying to help and figure out for years.

Wow.

I have a call into our DAN! for an appt. and forwarded him the test results.

We've been on Azith. and ibuprofen for 30 days...

We are backsliding. I wonder if the next step is a steroid.

She was exposed to active strep as an infant. Followed by head growth jumping the chart, and unexplained fevers...nothing ever confirmed.

Age 2 1/2 documented strep.

Things went 'bad' from there.

I'm shaking.

I truly cannot thank the members here enough.

Sarah &

Samantha 5

Absolutely do not do steroids until you have absolutely positively ruled out lyme and coinfections! I believe Cunningham has indicated that the cam score can be elevated by lyme too. Lyme often starts with a fever and often is characterized by unexplained fevers. It is not easy to rule out lyme b/c the testing is not reliable so I would recommend seeing a llmd (lyme literate medical doctor) not an infectious disease doctor or PANDAS doctor. Those who are strictly PANDAS do not understand lyme so you need to seek an opinion from a trained lyme expert. I would suggest even trying a short lyme treatment if the llmd advises this. A short treatment of suspected lyme is much, much safer than giving steroids to a child who may have a chronic infection. Steroids may help some but it is not worth the risk if there is even a chance that your child has lyme or another infection. Steroids can make things much worse b/c it further suppresses your immune system and if you have something like lyme it can allow it to gain further ground in the body. I have read that it can make some symptoms irreversible. Too many on this website are fixated on strep and often overlook other infections. I believe this is because the PANDAS doctors are also fixated on one infection and many of these kids have multiple active infections that need to be treated, not suppressed. "Backsliding" on azithro can be a die off reaction or "herxheimer reaction" that you get when you are killing lyme. Dozens of others on this website have learned that their child really has multiple chronic infections, not just strep and it is very troubling to me how quickly kids diagnosed with PANDAS are offered steroids without the proper lyme evaluation. Its really a misleading name b/c strep is not the only trigger for these symptoms.

[SSS]

Wow lyme mom, thank you.

dd5 has never been exposed to ticks-we are in a non tick area, she has been very sheltered, we've never had pets. I do understand it could be passed in utero- I have no tick experiences I can remember, but did grow up in MN. My DH cannot remember ever having a tick.

Myco. P. could very well be a factor here-

Is this also true for Myco. P and steroids?She is backsliding on the Azith. we have kept the same dose daily dose- 200 mg. for 40 pounds, for 30 days now and continuing.

She has a SCARLATINA rash on her bottom, and it has now moved onto both legs.

I am very scared.

I have an appt. with our DAN! on Thursday, an appt. with our medical Dr.'s to present this next week (they have no expertise in this, I know, but I have to try for their help)

Lastly, I have a phone consult with Scott Smith out of New Jersey who is a PANDAS expert pending for next week to get his take on it.

Scott Smith did email me back and said:

A CAM score of 175 is very, very significant.

 

Thank you so much for taking the time to reply.

I am all ears with any information you parents have who have walked this before me.

Again, I am running scared. I think she is very sick.

[thereishope]

Is this also true for Myco. P and steroids?

If I remember correctly, kids with Myco P can backslide with a steroid as well.

 

She is backsliding on the Azith. we have kept the same dose daily dose- 200 mg. for 40 pounds, for 30 days now and continuing.

I'm not sure on dosing, but hopefully someone else will tell you what their Zith dosing has been for an active infection. There are other kids who did better on other antibiotics than Zith.

 

Its really a misleading name b/c strep is not the only trigger for these symptoms

Yes, strep is not the only trigger for all kids. Many kids on here fall into the PITAND catagory where other things can trigger that reaction. I think the word "PANDAS" confuses basic doctors like pediatricians. However, I do not see this site as being fixated on strep as a sole trigger. Many just happen to have strep as the original known trigger that began their journey or seems to be the infection that causes the most distress. I don't recall parents saying strep is the sole possible trigger for all.

Edited February 5, 2011 by Vickie

[lyme_mom]

Wow lyme mom, thank you.

dd5 has never been exposed to ticks-we are in a non tick area, she has been very sheltered, we've never had pets. I do understand it could be passed in utero- I have no tick experiences I can remember, but did grow up in MN. My DH cannot remember ever having a tick.

Myco. P. could very well be a factor here-

Is this also true for Myco. P and steroids?She is backsliding on the Azith. we have kept the same dose daily dose- 200 mg. for 40 pounds, for 30 days now and continuing.

She has a SCARLATINA rash on her bottom, and it has now moved onto both legs.

I am very scared.

I have an appt. with our DAN! on Thursday, an appt. with our medical Dr.'s to present this next week (they have no expertise in this, I know, but I have to try for their help)

Lastly, I have a phone consult with Scott Smith out of New Jersey who is a PANDAS expert pending for next week to get his take on it.

Scott Smith did email me back and said:

A CAM score of 175 is very, very significant.

 

Thank you so much for taking the time to reply.

I am all ears with any information you parents have who have walked this before me.

Again, I am running scared. I think she is very sick.

Sure. It doesn't matter if you have a history of a tick-bite. The only person in our family who had a tick bite was my daughter and she had only tick. We all ended up having lyme though. My sister also has lyme and she lives an hour away and does not garden, hike or do any other high risk activity for lyme. There is so much lyme in our area that it doesn't matter. I had never even seen a tick in my life until we got a dog three years ago. I said to my husband, "What the && is that on the dog??!!" I had no idea what an engorged tick was and it was sooo gross. It is believed that you can get lyme from mosquitos and I am inclined to believe this is true. I also heard that some childhood vaccine might be contaminated with lyme b/c it was made in the same lab as the failed lyme vaccine. Who the heck knows but it is truly an epidemic. Steroids are bad for almost everything-infections, hormones, etc. I remember when my daughter had a really bad cough years ago (it was probably early mycoplasma or lyme or babesia) and my pediatrician wanted to give her steroids. I told him no way b/c a) I didn't think she was in danger of not breathing (a mother can tell these things) and I did not want her to have hormonal imbalances later in life from the steroids. He laughed a little and said ABC (airway, breathing, circulation,) comes way before H (hormones) suggesting that I should not worry about hormones b/c breathing comes first. I took the prescription and filled it just in case he was right and then I made a beeline for my naturopath. I had never taken my daughter to her before and she gave me some drops to give her every few hours and the next day she was absolutely fine. She even played in her soccer game. The pediatricians just liberally hand steroids out. Now I am SO thankful I did not listen to him b/c she probably had an infection then. How crazy is it to give a kid steroids without even attempting to find out what is CAUSING the symptoms! Later we realized how truly clueless our pediatrician's office was when they failed to diagnose lyme in my son for at least six months and then failed to give him the right dose of antibiotics for lyme when he finally advertised his lyme dramatically with the development of Bells Palsy (half his face was paralyzed). If you have any more questions please feel free to pm me. One PANDAS/LYME expert recently said that they think lyme is involved in almost all cases of PANDAS. I really believe some day they will realize that the early PANDAS treatment with steroids and IVIG was not wise. Steroids are just really so potentially damaging to the body and you don't know if the ivig is really safe and not contaminated with some infection. That's another topic but I think the PANDAS doctors tools are quite primitive and you are better off going to see a really good lyme literate doctor like Dr. Beals in MD who also treats kids who fit the PANDAS profile. We ended up being treated for multiple infections of lyme, bartonella, babesia and mycoplasma (not all for everybody) but my kids never had what you would call PANDAS symptoms so I have never been to a "PANDAS" doctor. I have been reading this site for over a year though and I am horrified that these doctors are routinely offering steroids and ivig without first doing exhaustive evaluation for other infections besides strep. I also have a family member who has been to several of the top pandas docs and these doctors do not have sufficient training in tick borne diseases. One doctor gave her child steroids after ivig for lyme/strep and her child ended up in the hospital. It is reckless to give a child steroids when they have tick borne infections. As you can learn from reading the lyme forum, so many parents are finally seeing real healing in their "PANDAS" children after going to see a lyme literate doctor.

[LNN]

I think we are all finding that there are many paths to healing and many here have very strong feelings about various treatments and approaches. We all have a passion for healing our own kids and helping others shorten their own journeys. Lyme is certainly one avenue to explore. It was an important part of my son's recovery.

 

But I do not regret giving two separate month-long steroid tapers over the two years we searched for answers. It was a choice between being my son being disabled and being functional, between his feeling stupid and hopeless and his feeling pride in academic accomplishments and feeling "normal" again, even if the improvements only lasted a few months. It was a chance for us to see what was possible and kept us fighting for nothing less. The damage done to my daughter, suffering the wrath of an OCD-driven verbal attack from my son, was just as important in our decisions as the risk that steroids could give (the undiagnosed) lyme a leg-up. I'm in no way advocating steroids for a lyme patient. I only point out that there are many factors that need to be considered and sometimes treating symptoms is critical while you search for more lasting answers. There is a reason that OCD is considered one of the 10 most debilitating diseases by the World Health Organization. It isn't simply an inconvenient symptom.

 

What is the right thing for one family may be different than what's right for another. Some may have serious reservations about one thing or another and I think it's healthy to ask questions and not fall into group-think. But given the complexity of our kids' situations, it is ultimately up to each parent to decide what risks are acceptable or not.

 

S&S - I agree that you should look into what could be triggering your daughter's symptoms and perhaps consider adding another doctor to your team. But try to not become so worried about making a "wrong" decision that you become unable to make any decision. It can be overwhelming. There are no quick or universal answers. Focus on baby-steps and bringing symptom relief as you simultaneously work on additional lab tests and longer term plans. Only you know how much your family can handle at one time.

 

Best of luck in your next steps.

[kimballot]

I am glad to hear that you have an appointment with Scott Smith. I've not worked with him but I only hear wonderful things. I think he really looks at the whole picture and I think he can help you to sort out what is going on. It is always difficult to make decisions about your child but please realize that your child is different from any other child on this forum. There are pieces of information that each parent can offer you, but in the end you need to determine what is best for your child.

 

I see quite a bit of talk on here about avoiding steroids and IVIG, but I don't see that any healthcare practitioner has suggested these to you right now- so I am going to assume that you are not yet actually at the point of making that decision.

 

If your practitioner does bring these up - here are some things to think about.

 

Steroids shut down immune responses. This can be a good thing if your child is having an autoimmune response (where the antibodies are actually attacking your child's body tissue thinking the body tissue is an infection). However, this can also be a bad thing if your child has a real infection in his/her body because then the immune system cannot fight the infection and the infection can grow worse while your child is on steroids. Steroids have many side effects so they should not be the first thing you do, but sometimes if your child is having an autoimmune response and it appears that the underlying infection is cleared, it may be the best solution.

 

Most people would not consider IVIG as a first resort. Some kids have immune deficiencies and they need IVIG. Their bodies are just not producing enough antibodies on their own and we don't have any way yet to help them increase the number of antibodies. Some kids have an autoimmune response where their antibodies are attacking their body tissue and they do better with a short dose of steroids but it is not enough to stop the response. No one wants to keep kids on steroids long-term, so some people turn to IVIG as it can reduce inflammation and stop the autoimmune response. Just like with steroids, it is important to clear the infections before you do IVIG, or the body will just return to producing the same antibodies later.

 

In the end, the FIRST thing you need to do is find out if there is an infection (or multiple infections) and treat the infection(s) appropriately. It sounds like you have done Azith for a while and it is not working. You may need another antibiotic or your may need a combination of antibiotics - it depends on what the infection is. It may be strep, but it can also be something else. Mycoplasma, lyme, and sinus infections are common in our kids and they all need to be ruled out. There are other bacterial and fungal infections that can also come into play. Your DAN! doctor, Scott Smith, and your medical doctor will be able to help you with these. If you need to see a lyme doctor, then folks on the lyme forum can help you to find one or you can contact ILADS for a lyme doctor in your area. I think that carefully and systematically checking for infection is what you need to focus on right now.

 

Let us know how things go!

[SSS]

Thank you, thank you.

Yes, I agree, checking for underlying infections seems to be our next step, although in the meanwhile, I'm not sure what to do about our back-slide...

It will be interesting to hear next week the varying Dr.'s opinions.

Thanks again everyone for weighing in---

[eljomom]

Just curious--how does Scott Smith treat PANDAS??? Anyone....

 

Also, I keep coming back to the kids who might no longer have infection, but are now having chronic pandas symptoms.....we spend all this time trying to find a hidden infection, and there might not be one. What is going on in these kids.....symptoms stay with no infection? Is that the permanent damage? I mean, if pandas is like Rheumatic Fever of the basal ganglia....my father in law had RF as a child, and had a massive heart attack at 41, and died of a second one at 44.

[kimballot]

Just curious--how does Scott Smith treat PANDAS??? Anyone....

 

Also, I keep coming back to the kids who might no longer have infection, but are now having chronic pandas symptoms.....we spend all this time trying to find a hidden infection, and there might not be one. What is going on in these kids.....symptoms stay with no infection? Is that the permanent damage? I mean, if pandas is like Rheumatic Fever of the basal ganglia....my father in law had RF as a child, and had a massive heart attack at 41, and died of a second one at 44.

 

EljoMom - that is the $1 mil. question. How do you stop an autoimmune disorder? My understanding of the immune system is very primitive, I will admit, but I do understand that we have these memory B cells that float around our bloodstream looking for things that look like infections that we have had before. They recognize these infections (antigens) from the glucose and proteins on the surface of the antigen. They are supposed to be able to tell the difference between a foreign antigen and your own body tissue, but some of these foreign antigens are tricky and they have evolved to look like our body tissue. Also, some of us have just cruddy genes that make immune systems that can't tell the subtle differences between a foreign antigen and our own tissue... so those B cells keep making antibodies that attack the tissue even when the infection is gone.

 

Once the body produces antibodies that think a particular tissue is an infection, then every time the body sees that tissue those memory B cells can make the antibody again.

 

I think the only saving grace with PANDAS is that antibodies do not normally cross the blood-brain barrier. Normally they stay in the blood vessels in the brain, but they cannot get through the walls of the vessels to actually start attacking the brain. The problem is that when there is an infection or inflammation (even allergies can make inflammation), then the walls of the vessels loosen up and let antibodies pass over into the brain tissue. That is why it is important to keep inflammation down. It is also one of the reasons that steroids and IVIG help - because they are highly anti inflammatory. Of course, if you have allergies or infection that continue after the steroids or IVIG, then the blood brain barrier will open up again and you are in trouble!

 

 

IAM ADDING AN EDIT TO THIS POST-

Peglem just brought up a very good point- that researchers do not think that antibodies are destroying the brain with PANDAS - more that they are causing misfiring of neurons. This is very important and I hope I was not misleading.

Edited February 6, 2011 by kimballot

[kimballot]

Thank you, thank you.

Yes, I agree, checking for underlying infections seems to be our next step, although in the meanwhile, I'm not sure what to do about our back-slide...

It will be interesting to hear next week the varying Dr.'s opinions.

Thanks again everyone for weighing in---

 

Hi - regarding your backsliding while you wait for your appointment next week - I don't know if you use anti inflammatories, but they can help if it is a PANDAS reaction. Quercetin and fish oil are good for long-term use, and many people use ibuprofen for short-term relief. I am sure Scott Smith and your Dan! doc will have lots of ideas about ways to reduce inflammation.

[SSS]

Thank you, thank you.

Yes, I agree, checking for underlying infections seems to be our next step, although in the meanwhile, I'm not sure what to do about our back-slide...

It will be interesting to hear next week the varying Dr.'s opinions.

Thanks again everyone for weighing in---

 

Hi - regarding your backsliding while you wait for your appointment next week - I don't know if you use anti inflammatories, but they can help if it is a PANDAS reaction. Quercetin and fish oil are good for long-term use, and many people use ibuprofen for short-term relief. I am sure Scott Smith and your Dan! doc will have lots of ideas about ways to reduce inflammation.

 

 

Hi- I am using ibuprofen 2x a day, and restarted back on Omega 3 fish oil (have been off it for a year or so)

I think my dd5's immune system is totally 'whacked'

The last time she was 'sick' with ANYTHING was over a year ago- I ended up taking her to the emergency room for a bladder infection that came on, and while there, because she had a cough (although not a huge one) I talked them into a chest x-ray, which showed pneumonia. We got antibx. (can't remember which one) she got better, and since that time, over a year ago,

 

she has not had a sniffle, cold, cough, NOTHING, despite the fact her K class in a horror show of constant illness, others of us in the house having colds.

Now, it seems as though perhaps her immune system is waking up?

The Scarlatina rash on her body, she has some mild sniffles, I think she is starting to hold urine, she says it hurts 'a little' I am wondering if we have another bladder infection, or what the heck is going on!

By the way, she gets ample Vitamin D, and C, daily- GFCFSF diet, she eats well, multi vitamins, probiotics, etc. and has been nutrionally 'sound' for a long time now.

Edited February 6, 2011 by S & S

[kimballot]

Thank you, thank you.

Yes, I agree, checking for underlying infections seems to be our next step, although in the meanwhile, I'm not sure what to do about our back-slide...

It will be interesting to hear next week the varying Dr.'s opinions.

Thanks again everyone for weighing in---

 

Hi - regarding your backsliding while you wait for your appointment next week - I don't know if you use anti inflammatories, but they can help if it is a PANDAS reaction. Quercetin and fish oil are good for long-term use, and many people use ibuprofen for short-term relief. I am sure Scott Smith and your Dan! doc will have lots of ideas about ways to reduce inflammation.

 

 

Hi- I am using ibuprofen 2x a day, and restarted back on Omega 3 fish oil (have been off it for a year or so)

I think my dd5's immune system is totally 'whacked'

The last time she was 'sick' with ANYTHING was over a year ago- I ended up taking her to the emergency room for a bladder infection that came on, and while there, because she had a cough (although not a huge one) I talked them into a chest x-ray, which showed pneumonia. We got antibx. (can't remember which one) she got better, and since that time, over a year ago,

 

she has not had a sniffle, cold, cough, NOTHING, despite the fact her K class in a horror show of constant illness, others of us in the house having colds.

Now, it seems as though perhaps her immune system is waking up?

The Scarlatina rash on her body, she has some mild sniffles, I think she is starting to hold urine, she says it hurts 'a little' I am wondering if we have another bladder infection, or what the heck is going on!

By the way, she gets ample Vitamin D, and C, daily- GFCFSF diet, she eats well, multi vitamins, probiotics, etc. and has been nutrionally 'sound' for a long time now.

 

 

Hmm... I wonder if the pnuemonia last year was actually mycoplasma.... Either way, it sounds like she cleared up pretty well afterwards.

 

For now - Get her checked for a bladder infection and if it is negative it might be urinary frequency associated with PANDAS exacerbation. Also, if others in the house have colds that should be checked out as well. My son had an exacerbation recently when I had mycoplasma that was not fully treated. Our immunologist evaluated everyone in the house and it looks like mycoplasma was flowing here. Three of us are on Azith right now (not just my son) and he is actually doing much better since other family members have been treated!

 

Write all these things down and be sure to mention them to the team. They are all pieces to your puzzle!

[peglem]

Just curious--how does Scott Smith treat PANDAS??? Anyone....

 

Also, I keep coming back to the kids who might no longer have infection, but are now having chronic pandas symptoms.....we spend all this time trying to find a hidden infection, and there might not be one. What is going on in these kids.....symptoms stay with no infection? Is that the permanent damage? I mean, if pandas is like Rheumatic Fever of the basal ganglia....my father in law had RF as a child, and had a massive heart attack at 41, and died of a second one at 44.

But, in PANDAS researchers think that the antibodies are not destroying cells in the basal ganglia, but only activating them. The antibodies are plugging into receptors in the neurons, causing false signaling.