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

Hey everyone. My name is Chad and I'm 20 years old, currently studying to be a Civil Engineer. When PANDAS was affecting me I was diagnosed with Tourettes Syndrome and OCD. PANDAS affected me from ages 8 to 12 and ever since then I am essentially "cured" except for a few movement tics that no one even notices.

 

I am new to these forums and saw that it was mostly parents on here so I decided to join in case anyone wants to ask me any questions about my experience with PANDAS from my brain's point of view.

Share this post


Link to post
Share on other sites

Hi Chad,

 

Thank you very much for offering to talk about your experience with PANDAS with this group - what an incredible asset you're bringing to us. I'm wondering if you wouldn't mind putting together a slightly longer introduction when you have the time. If you could tell us how you were diagnosed and what that process was like, what was the course of your treatment and what meds or supplements you continued to take after the PANDAS was resolved, to prevent a relapse. Also, any details you care to share about what life was like as a young kid dealing with PANDAS.

 

I think you're very generous to join this forum for the reason you did and thank you again. I'm so glad that you're doing well now and wish you continued health!

 

Best,

 

Heather

Share this post


Link to post
Share on other sites

Ditto what Heather said. First, it's great to hear you're studying to be an engineer. My son is almost 13, and his emotional issues have hindered his studies at some times to the point I wonder how college will be for him. He is extremely smart (cognitive scores are extremely high), but grades don't always reflect that. Would love to hear your awareness level at that time about what your brain was going through..did you recognize what was gonig on? My son doesn't have a lot of self awareness..he's had some quirky behaviors that are OCD (obsessive thoughts/compulions) related but I think for him, that's his normal.

 

Thanks for joining and your willingness to share your story!

Share this post


Link to post
Share on other sites

Count me in, also! Would love to hear when you were diagnosed, what interventions (meds, IVIG, abx, supplements) you used, whether or not you still take any of these, and whether or not you ever experience any sort of regression due to illness, stress, etc.

 

Thanks so much for offering to share! And thrilled to hear you're doing so well now!

Share this post


Link to post
Share on other sites

Starting age 6, I got strep throat for the first time. Started off being nothing out of the ordinary, but by age 8 I would have strep throat 80% of the time. Doctors would just give me antibiotics send me my way and within 3 weeks I'd be back in there office with strep again. Aggravating, but nothing too terrible until one day I woke up screaming in my bed. My mom said I looked possessed and was saying words and sentences that just did not make sense. She took my temperature and it was 106.9 degrees. I remember hallucinating seeing demons and the world did not look like the world. My mom managed to cool me down with wet wash clothes and returned me back to normal. So now every time I would get strep, I would also get high fevers and become delirious. This happened for about 2 months when one night I was spending the night at one of my friends house and I thought I was going to become delirious. Turns out this time, I did not have a fever, but I knew something was not right. Walking back into my friend's bedroom, I collapsed on the floor and had my first seizure.

Overnight after the seizure, I started having eye twitching and neck cracking tics. Things kept getting worse and worse until I was diagnosed with Tourettes Syndrome and OCD about 4 moths after the seizure. I had loud vocal tics which sounded like a fire alarm and dolphin noises (you know the teachers loved me haha). My OCD symptoms were liking to touch my joints such has the inside of my knuckles, elbows, and knees. Also my smell became much more sensitive. If I didn't like a certain smell, I could not get near it without gagging. So around age 9 all the doctors were wanting me to try medication that could or could not have helped. My mom and I decided we weren't going to mess with medicine since none of it was actually proven to be effective at the time (I think this was in 2003). My mom was doing research on the internet when she stumbled upon an article explaining how there was a theory that streptococcus could cause Tourettes and all sorts of other stuff. We went to the doctors with this information and none of them took it seriously. To them PANDAS was just nonsense.

 

So instead of medication, I started seeing this great Psychologist who helped me find ways to ease my tics and compulsions. She helped me find ways to relax when tics were flaring up or in situations where I could receive public scorn. Meanwhile, I was still attending public school and my grades were dropping. Before PANDAS I was incredibly good at math and then it was like my brain just turned off the ability for me to do it. Everything that was happening, I could notice. I had extreme self awareness which really helped out when I explained my situation to others. Peoples jaws would drop when a 9 year old would explain to them that I had Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. Because of good friends who would back me up, no one ever bothered me about my tics or compulsions at school except for substitute teachers.

 

My mom and I eventually decided to visit an Ear, Nose, and Throat specialist who wanted to get rid my chronic strep throat. He could see that my tonsils were full of bacteria and said we should remove them and my adenoids. I got them removed and all of my Tourettes and OCD started to decrease. When a year you couldn't even tell l had Tourettes or OCD and it remains the same way to this day. Everything took time, but everything I lost to the PANDAS came back including my math abilities. To this day I have not had a single case of strep throat again and I have only one or two tics that come only during stressful times such as exams and even then only last for literally minutes. Certain sicknesses can trigger tics also. For example if I have a runny nose, I will develop a small nose twitch tic.

 

I never took any medications, supplements, IVIG, or anything. Just had my tonsillectomy and found ways to relax my tics/compulsions.

Share this post


Link to post
Share on other sites

Thank you so much for taking the time to share your amazing story. We parents really love hearing recovery stories, especially told from your 1st person perspective. You're so lucky to have a wonderful mom and great friends that supported you. Good luck to you in the future.

Share this post


Link to post
Share on other sites

Thanks Chad, for all the detail you provided. I'm interested that your symptoms resolved with tonsillectomy and adenoidectomy. These procedures don't seem to be generally recommended now for treating PANDAS, but they worked for you, clearly!

 

Just last week I asked our LLNP about this and she basically said the procedures were not the first line of treatment, especially if the child doesn't have a lot of strep throat problems. However I had also just read a blog on Psychology Today, written by a psychiatrist who does recommend doing them for PANDAS.

 

Anyone have any thoughts or knowledge about this?

 

tx,

 

Heather

Share this post


Link to post
Share on other sites

In my opinion, the majority of the medical community just doesn't know what to do let alone recognize PANDAS as a real thing. If PANDAS is simply the antibodies attacking the brain instead of the bacteria, then theoretically removing the antibodies or the bacteria causing the antibodies to react would stop the 'attacks' on the brain. It's such a shame that the medical community doesn't put more research into this.
Please though, if any of you have any questions don't hesitate to message me.

 

I want people to be able to pick through my brain to find out ways to help others. Plus I love hearing about other peoples cases.

Share this post


Link to post
Share on other sites

Hi chad,

Thank you for sharing, I have 3 children with pans. What I find interesting about your post is that you got high fevers with every strep infection. I wonder if that is the reason why you improved. I think many of our children have problems with their immune systems and don't present with typical symptoms of fever with an infection. My children never get a fever because their bodies don't fight off their infections properly. I am thrilled that you have improved and think its wonderful that you want to share your experience. My children don't express how they feel inside, aside from just complaining that they don't feel well. It would be great to hear how you as a child felt during that phase of your life.

Share this post


Link to post
Share on other sites

Chad, thanks for your story, it's great to hear. I have 2 kids with PANDAS, but in retrospect, I also suffered from it through my childhood. My strep history sounds very similar to yours, never being able to clear the strep, very high fevers, hospitalized more than once for strep. My PANDAS symptoms manifested in OCD and severe anxiety, no tics that I recall. While my tonsils were never removed - though my mom begged (it was out of fashion as a treatment back then), I eventually did outgrow the chronic strep my freshman year in college. I was hospitalized for seizures as well (had the hallucinations at that time too) but they never did figure out why, after a week in the hospital, I finally checked myself out and went home to my mom (mom's can fix anything). For some reason, after that time, my chronic strep resolved itself.

 

I now have clinical OCD - likely as a result from the untreated PANDAS. I too am a civil engineer, (BA and MS in Civil Engineering - Transportation), and think it's wonderful that you've done so well and are succeeding. Good luck with your studies - they do get easier after you finish your core classes ;)

Share this post


Link to post
Share on other sites

Chad,

 

There is also a 2 FB groups for teens/kids with PANDAS (I don't know the specifics, you can probably do a search and find them.) It might be helpful to them to hear your story and gather support from the fact that it can and will get better for them. Just a thought.

Share this post


Link to post
Share on other sites

Thank you for sharing, Chad. Your history sounds very similiar to mine. I am much older than you, 48. My symptoms started at age 7 after strep throat, high fever and hallucinations (only one episode). I developed PANDAS and chorea symptoms shortly after and was diagnosed with Sydenham's Chorea. There was no PANDAS diagnosis back in 1972. By age 15, I was clear of most of my symptoms. Like you, I now have minor tics and some slight OCD that no one would ever know about. I never had my tonsils removed. My "treatment" was monthly bicillin shots which was a prophylactic against strep...and later, oral Pen VK until age 21. I struggled with math, and barely made it thru college level, but I did with tutoring...ADD meds would have helped most likely.

 

I now have two children with PANDAS, and one has the PANS part as well (DS14 with the worse symptoms). DD17 is doing very well...her main symptom is ADD, which is controlled by meds. DS14 is struggling. His PANDAS started shortly after one strep episode at the age of 10, and we are constantly trying to help him with various treatments. He just missed 10 days of school, went back today thankfully. Anyway...please be aware PANDAS has a genetic component that can be passed down to children. I would never tell anyone not to have children, but it is something to be aware of.

Share this post


Link to post
Share on other sites

Chad, thank you so much for sharing your story! My 9 year old DS has an almost identical history - scary how similar!! He has chronic strep infections, appeared "possessed" all of a sudden, extremely high fevers, hallucinations (esp of demons or vague evil black thing), also made a lot of comments about the world "not looking right", had a possible absence seizure, talked about his brain feeling cold, eventually developed loud and disturbing vocal tics (chicken noises, loud screaches, hooting, etc), and OCD that is always present but cycles in severity. He was also amazing at math pre-PANDAS, and now freaks out if I ask him to do a simple math sheet. He is extremely self-aware of what is happening to him, and although I think that is mostly a blessing, sometimes it is also a curse.



The only differences I can see in my DS's story and what you wrote, is that DS never had motor tics, and although I fought hard to get his tonsils removed, the doc refused to also remove his adenoids. So here we are several years later, with symptoms continuing and even worsening. Every blood draw shows elevated strep antibodies. He had a baseline ASO of 27 from many years ago (pre-PANDAS), and for the past 4 years his ASO ranges from 240 - 600, which leads me to believe that he has a chronic strep infection hiding somewhere (adenoids?). He had almost 12 months of wellness when we swamped him with combo high-dose antibiotics, but we did not feel safe to continue this extreme protocol.



Thank you again for sharing your story! It gives me hope that if we can somehow get to the root of DS's infection(s) that he really can be well again. It was especially exciting to read that EVERYTHING came back again with time, even those math abilities!


Share this post


Link to post
Share on other sites

After getting my tonsils and adenoids removed, I had PANDAS behaviors for about 1 and half more years, but the severity of it decreased consistently throughout that time.


If you wouldn't mind could you send me the link the the Facebook group for kids with PANDAS? I tried to search for it, but can't seem to find it.

 

As a kid going through PANDAS, there were some points where I questioned why I was living. I asked my mom once or twice why God would make me suffer through this. It wasn't until one night I went to a Good Friday service at my church where I walked out understanding that I rather than looking at PANDAS as such a burden, maybe I could turn it around and be able to help others.

 

The easiest way to explain to someone what it was like living with PANDAS is that there are metaphorically two 'people' inside of you. For parents of kids with PANDAS, there is your child who you know (soul) and there is their brain which is a separate entity. Unfortunately, the brain overrules the soul commanding your body to do certain acts the soul does not want to do. That's how I always explained it to people so they could understand a little bit more. It was a constant battle of 'who' is in control.

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

×
×
  • Create New...