Could it be PANDAS?

[kc35]

Last year my DD had an eye darting tic. We saw a neurologist who tested her blood for Strep, then EEG and MRI. Everything came back normal and we were told that she has tics. The eye tic went away within 2 months. She was sick a lot last year, but never had antibiotics for anything.

 

Within the past month and a half there have been a big increase in tics . First eye blinking, then arm/finger stretches, full body stretches and even jumps. I've also seen an increase in moodiness and a little OCD type symptoms. When asked why she does these things, she says she has a feeling to do them. She has been sick for the last 2 weeks with a little cough and low grade fever/night sweats early last week. A girl in her class tested positive for strep. So I took her to the dr yesterday who did the rapid strep test but it turned out negative. We are waiting for the 48 hour test. He prescibed amoxicillin just in case she has strep and if she doesn't then he said stop using the amoxicillin. We have not given her any yet since she seems fine. My question is do these symptoms symptoms sound like PANDAS? With PANDAS does a 10 day course of antiobiotics improve the tic symptoms? I'm wondering whether I should just give her the antibiotic to see whether she improves even though she doesn't seem to have strep and her infection/cold seems a lot better.

 

I am seeing a neurologist who specializes in tics in Dec. I am not sure whether they are PANDAS literate. I called their office to see whether they they think she needs to have a blood test for strep. I'm waiting for a call back. I know my pediatrician won't do a strep blood test since he didn't even know what PANDAS was. Thanks.

[Broo100]

Pandas can come from a number of infections. It could absolutely be mycoplasma or any other thing

[3bmom]

Welcome! I can only speak from my experience but I went 4 years without a Dr "in charge" of my son even though at the time a highly respected hospital diagnosed him with probable PANDAS and gave us antipsychotics. At the time my DS was just 6. I did diet and antibiotics. Read thru the forum there is a wealth of info and more Drs available who have experience.

 

Until I got an experienced immunologist I located my original pediatrician who knew I wasn't crazy. His feeling at the time was the body is very complex and if I try something that I know won't harm such as an antibiotic and it works why should I make the child suffer until studies figure it out. It worked.

 

My son was asymptomatic and never had a sore throat. Only with the first flare did the culture come back positive. We always had to do blood work and both ASO and antiDNase B. because sometimes one was elevated high and the other not.

 

You will learn there can be other infections and carriers in your home. As you turn over these stones hopefully you will stop it in its tracks.

 

Most Drs have been chastised about antibiotics and creating superbugs. I was personally yelled at by a nurse in an urgent care in front of a room full of people, and friends make comments because we are on prophylactic antibiotics. I did some research. 80% of our consumption of antibiotics is from our food. Round up pesticide is patented as an antibiotic and the FDA just raised our limits of exposure because of super weeds.

 

I suggest organic', no dairy, no grain diet. Sounds overwhelming but take it a step at time. Find a PANDAS literate Dr. They may be an immunologist, infectious disease, neurologist, pediatrician or ...

 

People on this website are very experienced and our kids all have a different medical tapestry creating PANDAS but they all have caring parents like you who want to get their child back and also help others not go thru what they have. Hang in there. You are at the right place. 3bmom

[rowingmom]

Your daughter"s symptoms sound much like ours did in the beginning.

 

We used two 10 day courses of PenV for a positive strep infection. 3 days after beginning the first round, all of the symptoms resolved, but came back when the abx were discontinued. After starting the second round, again symptoms resolved but then returned approx. 7 days in.

 

This could have been a herxheimer response (which occurs when gram negative bacteria die releasing inflammatory endotoxins), or perhaps because the single antibiotic was not capable of clearing the infections we now know she was struggling with. Strep is a gram positive bacteria, and therefore not capable of producing a herx response.

 

We found out that DD's PANS symptoms were caused by a bartonella infection. These infections can be hard to treat and the IDSA (Infectious Diseases Society of America) will generally not treat long enough to gain remission. We ended up finding treatment with an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor).

 

Please be aware that strep is not the only cause for these autoimmune reactions. I would find a PANDAS/PANS specialist to help with diagnosis.

[Dedee]

I would suggest that you educate yourself as much as possible about PANDAS / PANS and not rely on any physician to tell you what is wrong with your child. There are precious few physicians out there who truly understand it. Many may profess they do, but they are mistaken. Thankfully, there are more PANDAS / PANS specialist now than when we first started dealing with this with my oldest son 12 years ago. I recommend you find a specialist and make an appointment right away. Most likely you will have to travel and there will probably be a wait, so go ahead and make your appointment now. You can get lots of great information on the pandasnetwork.org website along with some physician recommendations.

 

This forum is a great place to come for information. You can also do searches for information. There is no reason for your child to suffer. If there are already signs of OCD and anxiety along with the tics, I would be concerned. This probably will not resolve completly without assistance. You may see intermittent lessening of symtpoms, but eventually this will rear it's ugly head and you will wish you had jumped on it while it was manageable. I'm not trying to scare you but rather give you the wisdom of many who have been there, and done that. Please keep us posted on your progress. Best of luck.

 

Dedee

[kc35]

The neurologist's office just called and they said that they do not believe in PANDAS. My previous neurologist who left the area did believe in it. I found a pediatrician in my area who is listed on the pandasnetwork site. I will make an appt with him as well. I just want to make sure that I am understanding this correctly. If my daughter has PANDAS then a 10 day course of amoxicillin will likely make her symptoms improve, even if temporarily? I believe that she currently will not end up having a strep throat infection and that the 48 hr test will come back negative. Is there any harm in giving her an antibiotic, if she doesn't have any kind of obvious infection? She's only been on a z pack once before. The neurologist's office reiterated that 200 mg MgO and 100 mg B6 can improve tics. Does anyone here have any experience with this? Thanks.

[pr40]

you do want to determine if there is an infection. again strep is not the only bug to test for, myco and lyme coinfections should be tested as well. your child's ticks could have improved for any number of reasons. there is no sure way to know, unfortuantely. You can know it the other way, when, for instance, you stop abx and tics come back. that'll be a more unambiguous sign.

 

yes, B vitamins can help with some tics but they are a temporary help. if this is pandas/pans, you have a system wide problem which you will not be able to resolve with any one thing. most of us here try to stay away from psychiatric drugs for as long as we can. other than that, I think everything is a fair game or, rather, a fair tray.

123 PANDAS goes something like this: 1) anti-inflammatories and abx 2) diet and lifestyle 3) methylation

[rowingmom]

Magnesium oxide is not well absorbed - try citrate. We use epsom salt baths (magnesium sulfate) to relax, but some people have trouble with sulpher compounds. Pay attention for any negative reactions. B6 as well can be a problem. Many of our kids have MTHFR genetic deletions which can cause a slowing of the methylation cycle. These kids need to supplement with methylated versions of B12, B6 and folate, and can have adverse (or increased symptoms) reactions to the unmethylated versions. Some react to sulfer containing supplements and foods.

 

I would stick with magnesium for now.

 

I think a trial of abx would not be a problem if you keep an eye out for allergic reactions.

 

There is much to learn, sorry to throw this all at you at once.

 

I daily chart all of DD's symptoms against treatment using an Excel stacked bar chart. If you would like a template just PM me. It saves having to write notes, and it saves the doctors from having to decipher them.

Edited October 1, 2013 by rowingmom

[LNN]

My question is do these symptoms symptoms sound like PANDAS? With PANDAS does a 10 day course of antiobiotics improve the tic symptoms? I'm wondering whether I should just give her the antibiotic to see whether she improves even though she doesn't seem to have strep and her infection/cold seems a lot better.

 

It could be Pandas/Pans. It's possible you could see an improvement in tics in 10 days. But tics tend to take time to resolve, so I'd look for an improvement, not a complete abatement. If it were me, I'd do the 10 day trial. But be sure to also give a good quality probiotic for the next 2-3 weeks as well, 2-3 hours before or after you've given the antibiotic. I usually gave antibiotics with breakfast and dinner and then probiotics at bedtime. (antibiotics will kill probiotics if given too closely together). Look for a probiotic that's refrigerated (your local health food store will have this) and one that contains a higher percentage of bifido strains. Something like Culturelle will do if you can't find anything else, but personal opinion is that probiotics with bifido strains do a better job of populating the gut with strains of bacteria that are better for nutrition.

 

My son was a ticcer. He'd get better with a 10 day course of antibiotics (abbreviated on this forum as abx) but then would relapse as soon as the abx stopped. After 10 months, he had a tonsilectomy/adenoidectomy (T&A) and it was only then that his tics and Pandas symptoms (OCD, hyperactivity, movements, urinary urgency, anxiety) resolved. Tics were the last to go and took about 2 months after the T&A to completely disappear. Kids can have strep that colonizes in the nooks and crannies of the tonsils where a throat swab won't reach. Sometimes, this prevents antibiotics from fully eradicating the infection and it's only after a T&A that things get better. So just because your DD (darling daughter) is testing negative, that doesn't mean she doesn't have strep. You can also do a blood test to look for antibodies to strep and that can show you whether her body was fighting a recent infection. The blood test ASO (anti-streptolysin) usually shows a rise in antibody titers 1-3 weeks post-infection and an Anti-DNase B blood test will show those titers rising 4-6 weeks post-infection. But they too are not fail safe. Just possible clues.

 

There is no "harm" in the 10 day abx trial aside from the risk of a yeast infection in the gut or other body areas. Probiotics can offer some protection but not entirely. But do make sure you finish the 10 day and don't stop prematurely. Germ resistance comes more from stopping abx too early rather than from using for 10 days or longer.

 

Agree with Rowingmom - magnesium citrate is better absorbed. Giving at bedtime can help with relaxation. If you want to use B6, use the P-5-P form of it, which carries less risk of adverse effects. P-5-P can help with detox - the body's attempt to get rid of toxins and dead cells. My son tics when he fights an infection faster than his body can cleanse itself of the carnage. But don't introduce abx, magnesium and P-5-P at the same time or you won't know what's helping and what's causing any adverse effect. Try the abx for 10 days. Then introduce magnesium for a week. Then add p-5-p. Space them apart and start with low doses.

[nicklemama]

You might see small improvement in 10 days time. 10 days barely scratches the surface of PaNDAS. Amoxicillan is not particularly effective. Keep your appointment with the ped recommended. The neurologists view is quite common. Don't let that stop you from exploring PANDAS.

[kc35]

My husband doesn't want to give my DD (6) abx until it is proven she has an infection. I tend to agree with LLM about trying the 10 day course of amoxicillin to see what happens but my husband disagrees. I will find out the results of the 48 hr strep test tomorrow. She seems fine except for alittle cough and the tics, which are stressing me out. Fortunately I got an appt with a PANDAS literate pediatrician on Oct. 7. What tests besides the 2 mentioned in one of the posts - ASO and Anti DNase B should I ask for? I hope this Dr is willing to run the tests. Thank you so much to all who have given me advice, I really appreciate it. I hope I am making the right choice by waiting.

[3bmom]

I would include looking for mycoplasma pneumonia, especially since there is a cough. We were positive without symptoms. Also checking for viral infections Herpes Virus 1,2 and 6. There are a lot more tests as you will learn from reading on this website.

 

I would think about the risk of untreated strep or another infection for at least a week before you see the Dr. over a round of antibiotics unless they are allergic. The tics and behaviors are due to inflammation on the brain.

 

A lot of kids here test negative on the throat culture and need to have blood drawn to see the rise in antibody titers for confirmation. I would make sure they do both the ASO and AntiDNase B. Once I was told he didnt have strep only to find out 4months later that they didn't do both tests. One was normal and the other very high. We are now on Intuniv for focus which had never been an issue before the untreated flare. Just my thoughts...

[Missmom]

I would give the abx anyway and finish it. As long as your daughter is not allergic to pennecillin then it won't hurt her. It will give you something to go on. Look for improvements in tics but also improvements in just her general personality and demeanor. You may notice just slight improvements but it may be enough to know you are on to something. In kids OCD can take on many forms. It is not just the textbook OCD that you might think of where a person is very neat/clean, etc.... It can be simple things like your child saying mom..... Mom..... Just to be saying it. It can be touching things, smelling things, etc.... If you have time google kids and ocd.. You might be suprised at what you may have thought was just quirky behavior was ocd. I know i was suprised. Tics can sometimes be compulsions or OCD, it is just hard to know sometimes. My son also started with tics, worry, anxiety, and mild OCD. All were manageable but got so much better with just a trial of abx. We now see a great neurologist and have him on augmentin. I feel like I can call this doctor at any time and she would help me. I know tics are awful, not because it bothers the child but also because you worry about other kids making fun of the tics. Best of luck. Oh and also I just wanted to say my son had two negative throat swabs and a negative culture, but I convinced the pediatrician to run the bloodwork( he was very skeptical) he only ran it because I insisted and begged. Sure enough bloodwork came back positive... He was shocked and although he had never treated a pandas kid before he did diagnose my son and referred us to a neurologist who got us on our treatment plan. You have to be strong with these doctors and advocate for your child. If I had not gotten that bloodwork done I can't imagine how my son would be now. The pedi would have just sent us out the door with a diagnosis of transient tics. Hope you find answers too.

[nicklemama]

If your child turns out to have PANDAS, 10 days of amoxi will be nothing. My son has been on antibiotics for 3 years. The risk of further amplitude of PANDAS symptoms/behaviors is a lot worse than a 10 day course of amoxicillan.

[pr40]

ask your husband what he would do if this were rheumatoid arthritis or heart damage caused by strep. if he would not object to the usual course of action, which is long term abx even when there is no ongoing infection, he has no reason to object to long term abx for PANDAS. you just need to establish that this is PANDAS.

look at pinned materials, there are tests suggested there.