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

 

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!

Could the strep be in his stomach? Does he have stomach problems?

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.

MMC I've always wondered if this could be genetic. Have you heard of other pandas/pans adults whos children have also aquired it? I haven't seen much on this topic and am interested.

Share this post


Link to post
Share on other sites

Pandasphilly, I have read other posts from parents on the forum here that state they or their spouse had PANDAS - like symptoms during their pediatric years. I suspect it often is, but not always. I know for our family, it is. Perhaps, its a combination of genetics from both parents that comes into play. My sister had PANDAS symptoms as well, but much less severe than mine. Her children did not have PANDAS, but one did (does) have Crohn's, another autoimmune disorder. Our father had RA, an autoimmune disorder.

 

PANDAS/PANS sure is more prevalent in children these days and this begs the question, why? Vaccine damage to immune systems? I hope the medical community can figure more of this out for the sake of our potential grandchildren.

Share this post


Link to post
Share on other sites

I, too, think I suffered from PANDAs as a kid and teen. My sister was constantly in bed, home from school, with one strep infection after another. And she had the classic symptoms . . . fever, sore throat, etc.

 

Meanwhile, like my DS, I never demonstrated any of the classic signs of strep infection, but I was a behavioral handful; today, I would have been diagnosed with ODD, I'm certain. In my parents' eyes at the time, I was just a pain-in-the-neck kid: willful, temperamental, emotional, quick to anger, raging. It was a painful childhood in many ways because I constantly felt misunderstood. Knowing what I know now, I realize a lot of my actions and reactions were born of fear and anxiety. But back then, you didn't seek either medical or mental help for a difficult kid; you just tried to discipline them into submission. :(

 

I didn't have a "classic" presentation of strep until I was well into adulthood and my DS was 6, in school, and bringing the strep home with him. For the first time in my life, I got raging physical . . . instead of mental or emotional . . . symptoms. Twice, my throat was so sore and swollen, it sent me to the ER because it was either after hours or on a weekend and I couldn't get a doctor to see me and prescribe abx fast enough.

 

Frankly, this is another pattern that gives me hope . . . that my immune system finally "grew up" and allowed me to have a classic medical presentation instead of my flying off into a rage. ^_^ And while I'm still prone to being somewhat emotional, perfectionistic, and anxious -- particularly over those things I have less control over (i.e., I'm rightfully identified as a "Type A" personality!), I generally manage myself and my reactions well enough that I "fit in" with my family and my peer group.

 

So I figure my DS at least has a fighting chance! :D

Share this post


Link to post
Share on other sites

Wow thanks MMC and momwocdsons,

My son is so severe that the thought of grand kids (or him having to deal with this again, particularly if he has a chance at recovery) makes me cringe at present. I know it's aweful but our life at present seems a mute point. We just try to get through every day but there's little enjoyment or harmony, stressed marriage, suffering siblings. Some days it seems what's the point of it all. Maybe in a few years I might feel different. My daughter at 12 said she may not have kids if this is a possibility. I'd rather see her actually living a fulfilling life without kids than doing what were doing. Perhaps if treatment becomes more easily available or the disease gets recognized it won't be so bad for them. Again my son is a severe case. But there's always hope

Share this post


Link to post
Share on other sites

tpotter - yes, stomach is a very good possibility. All 3 of my kiddos have chronic stomach pains, the youngest has GERD. What exactly would we do for testing or treatment for strep in the stomach? We tested for h.pylori - all 3 negative.

 

Chad - I don't know about the facebook page. If someone else could post it I'm very interested too. I've been reading your posts to my DS9 and he's amazed that someone else really gets it. DS has also asked me why would God allow this to happen to him. We have many deep discussions and I pray that he will have the maturity and strength to see beyond this and not be crippled by despair. But that's pretty hard in the midst of brutal symptoms. I would love to be able to show him the facebook page so he feels less alone.

 

As for having PANDAS myself - yes, I'm sure I had it too, but got diagnosed bipolar - which eventually just went away when I was in university. I've never heard of bipolar that just goes away. I'm certain now it was PANDAS and I just had a Eureka moment as I was typing this. My little sister had scarlet fever right before all this. Aha!

Share this post


Link to post
Share on other sites

Facebook pages are Pandas network and pandas resource network and pandas canada and pepsi refresh project pandas. typing any of these in search should call these up. Momcap I was thinking of you the other day when I joined all of these and saw a person on pandas network from ontario (Rebecca)

Share this post


Link to post
Share on other sites

Facebook pages are Pandas network and pandas resource network and pandas canada and pepsi refresh project pandas. typing any of these in search should call these up. Momcap I was thinking of you the other day when I joined all of these and saw a person on pandas network from ontario (Rebecca)

These are great, but is there another one specifically for kids?

Share this post


Link to post
Share on other sites

Chad

Your journey is amazing! Thank you for finding this post and writing up your experiences!

 

My 8 yr old son was diagnosed with PANDAS last year and underwent a series of tests. It all started with strep infections back to back over 3 months. He had OCD, hallucinations, brain talk where his brain was telling him bad things, separation anxiety, and had the same questions about why God was doing this.

 

I told him about your story and his eyes lit up with excitement. He was amazed that someone else had gone through this the same as him. What was really eye opening is when you described there being 2 people inside of you. When I mentioned this to my son, he completely understood. And I finally did too!

 

After IVIG he is doing so much better and is nearly back to his normal behaviors. I just wanted to thank you for telling us your story as it has brought clarity into an environment where there has been so much fog. :)

Sincerely!

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...