Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Recommended Posts

Hi. My son is in a flare and I feel lost. We did IVIG a year ago and things were going back to baseline until about a month ago. At our year checkup with Dr. L she didn’t seem too concerned about his mild tics and prescribed a 3 day steroid burst. We finished those about a week ago but I’m not sure it worked because his behavior this weekend was horrible. A first .. where he raged. He’s been hyper since and today I noticed his pupils are dilated. Should I test him for strep even though he’s on antibiotic? We started Motrin today. Should I call Dr. L tomorrow? Thank you..

Share this post


Link to post
Share on other sites

I wouldn't hesitate to call Dr. L. (but I don't know how she works with the phone).  I also got a home strep test kit (a bit of work to do the test properly, but the convenience and cost reduction is significant), so you might consider that, so you can test at home any time without worrying about the effort of taking him somewhere.

Is the Motrin helping?

Share this post


Link to post
Share on other sites

Hi,

I did call Dr. L but her office is on vacation until Monday. The new guy that manages the phones can only manage the phone. ANd he told me to call back on Monday.

What is the brand of home strep you use? I don't trust the one I have anymore. It is a green box and starts with A.

I did run him over to our pediatrician and we did the rapid and the other one that looks for more of the strep bacteria. Both negative. Which relieves me but then what is making him flare?

We did put him on Motrin and that is helping. He's calm and I don't see the wildness that I saw late last night. Why is he flaring? WHY?

We are in Northern Virginia. I have an appointment with Dr. F late August and just made an appointment with an immunologist/allergist called Dr. A in Fairfax. His immunoglobulins are pretty normal minus IGA, which was only slightly low.. but he came recommended as PANDAS friendly and willing to puzzle it through.  

Thank you for responding back. 

Share this post


Link to post
Share on other sites

Sorry I didn't reply earlier - have not checked into this forum since I wrote July 6th.

I think the one that we used was Quidel Quikvue (we actually lent it to someone and don't have it right now).  It is used by some MD's, but then became harder to get some time back.

It is often hard to figure out what is making him flare.  We had one slowly getting worse over months, and then we did a teeth cleaning that dramatically increased the flare.  That's when we found out he had mild gingevitus (hard to get him to brush when he is in a bad state), and (our dentist confirms), bacteria can enter the bloodstream directly through the diseased gum tissue.  It also took a while to clear it, but we did.  But suppose we never did a teeth cleaning - it may have been a while before we latched onto that problem.

Share this post


Link to post
Share on other sites

Hi Bttrfly1,

I could have written your exact post this week. My daughter (5yo) had a perfect past 4 mos.  Not a single tic, no rage, etc. Then this week the hyperactivity, obsessions and rage started with a vengeance. I have no idea why and I’m devastated. I’m sure the tics will follow shortly. She started a day camp this week - is she overtures? She has a slight stuffy nose - maybe a virus? We saw Dr. L last January but she has been unresponsive to my calls and emails. I put in three calls and emails to her last winter when we were going through and she never responded to us (even though we paid her $1200 fee and drove three hours to see her in Jan.). My ped is not helpful and doesn’t do any investigating beyond a strep test, and I can practically see her eyes roll every time I show up requesting another one  

I’m curious to know what her response to you will be. Will you please report back when you hear? And may I ask, how old is your child?

good luck. 

Share this post


Link to post
Share on other sites

Hi Jsl25

I am sorry for your struggles.

However, I will beg you not to expect the "tics to follow shortly".  Who knows?  They might not...Children live up to your expectations.  If you don't think about the ticcing they might just never come.

Having said that, I have had struggles with a "Sick School" in the past.  If the building where the daycamp is being held is old and moldy, or very new and full of new building chemicals, these might be the culprit.  A stuffy nose would indicate  some sort of allergen.  You might want to read Dr. Doris Rapp's book "Is this your child's world?"

My son would have stuffy nose while in preschool.  It cleared up when he entered grade school, and we realized the link only when he was put back into the preschool building for summer daycamp.

Share this post


Link to post
Share on other sites

Hi

my son is 8. Diagnosed at 7 and started IVIG a few days after he saw Dr. L. 

Dr. L’s office did call me back. I spoke with nurse Brenda and she relayed my concerns to the doctor. Then she called me back with what do to. For my son, she said treat with Motrin 3 times a day for two weeks. She said it does the same thing as a steroid without leaving the immune system weak.

Her office manager also called me back later that day to tell me the same thing. I would be persistent with them and keep trying. They respond but it seems not as fast as we’d like. 

 

 

 

 

Share this post


Link to post
Share on other sites

It's been a while since I've posted on here.

My DD10 had a couple of extremely scary episodes a few months back, Apr-May 2018. Our Primary knew a doctor that specialized in PANDAS. So we made an appointment. DD didn't like him, and he prescribed Amoxicillin and things got even worse. We put her on Luvox 100mg.

She had a couple of scary episodes at school and I suggested that we slow the Luvox. I started her on Probiotics that I learned about here. She has gotten much better. Her obsession(s) have lessened a lot.

Things can trigger her anger, but that might be mostly normal stuff, like social injustices. Calming her down is a challenge, but things have never gotten as bad as those first couple of times.

This psychobiotic/probiotic helped the most

https://www.amazon.com/PRO-Kids-Childrens-Probiotics-Survivability-Recommended/dp/B00MVX0MKW/ref=sr_1_1_sspa?ie=UTF8&qid=1532808141&sr=8-1-spons&keywords=pro+kids+probiotic&psc=1

This one helped a lot.

https://www.walmart.com/ip/Culturelle-Probiotics-Kids-Daily-Probiotic-Dietary-Supplement-Packets-30-CT/16608856

In the 2 months we started these she is mostly back to normal, except when things get really stressful. She has regained her weight, can play at a friends house, can eat some restaurants, etc. But school, just the mention of it would send her in a panic attack. Her anxiety due to PANS might be less, but she was getting bullied towards the end of school. Kids would tease her about having to go to the bathroom all the time, and "why don't you just kill yourself" sort of comments.

So, we are going to homeschool her for 5th grade. The relief seems to have had an impact on several things. She is very strong in her opinions, but can still be reasoned with most of the time. But she is still pretty sensitive to any criticism.

Anyway, probiotics are not a cure, but as far I am concerned, they are the best treatment. Hopefully, when puberty kicks it will go away. 

The most helpful research, IMHO, is on psychobiotics. This stuff starts in the gut.

Share this post


Link to post
Share on other sites

When DD has a flare like she’s having now, we immediately bring her and check for typical infections. Turns out she has a bacterial infection. She when on amoxicillin, and got worse, I remember reading it means it’s working, but we changed it. Mom can’t handle the physical challenge of a big rage episode. DD’s on something else.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×