Jump to content
ACN Latitudes Forums

An Unexpected Turn of Events


Recommended Posts

Hi!

 

I just found this forum, after reading, and reeling from all of the changes, and information that I've had to absorb over the last 4 days.

 

A few days ago my son was perfectly normal in every way. And, by "normal", I mean by any 9 year old boys standards. OCD was something that I shook my head at while some unfortunate drama was playing itself out on the TV. It was someone else's plight or misfortune, or whatever I thought about it until Tuesday. If things got too uncomfortable, I only had to turn the tv off, and life as I knew it was restored.

 

It started out as a regular day. My son went to school. I went to work. We came home. We went to soccer practice. He used his iPad to make funny videos of his friends. He hoodwinked me into agreeing to a sleepover with two of his best buddies a couple of weekends down the road. He did homework while I made dinner. We ate. I put in a load of laundry while I sent him upstairs to take a shower, before we retired to our nightly bedtime reading routine. I cleaned up the kitchen, grabbed a laundry basket, and walked into my sons room where I expected to find him eagerly waiting to delve into the next chapter of our book of the week. We take turns reading, and he likes that I "do the voices." I was not prepared for what happened next.

 

I walked into my son's room. He was standing in the middle of the room, wrenching his hands and crying. My most stoic & laid back boy in the world hardly ever cries about anything (even as a baby), so tears are a big deal. I quickly presumed some sort of dire injury... but he didn't look injured. I grabbed him into a hug, rubbed his back, and pleaded with him to tell me what was wrong. His response? "I'm so sorry! I'm so sorry! Please don't hate me. I don't want to go to jail!"

 

HATE him? My own son? JAIL?!? Seriously, how much trouble can even the craftiest of 9 year olds get into while taking a shower...? After 15 to 20 minutes of trying to calm him, without success, I sat him down on his bed, and stooped in front of him. It was as if I couldn't get him to look at me, because his eyes kept darting to the four corners of his bedroom. That immediately got my attention. I called his name sharply (wondering if he were cognizant of what he was doing). He sniffed out a "yes?" while continuing to glance at each corner, in the same order, almost on a cadence. I immediately went into my Mommy platitudes, telling him that nothing was too bad to tell me, etc... He stopped looking into the corners, and looked me in the eye, and said, "I'm sorry I tried to murder you."

 

Uh... Huh? Did he just say "murder"? Did he just say "murder me?"

 

Before I could decide whether or not to laugh (surely this was some sort of joke, inappropriate & out of character as it would have been), or set up an appointment to have my hearing checked, he poured out this story (crying hysterically) about how he could have caused me to break my neck, which would have caused my untimely death. He did this by telling me to "look" (earlier in the day), whereas I turned my head. My neck could have broken. Hence, he would have been a murderer. But, his murderous tendencies didn't stop with offing me (by heinous head turning), he had come to believe that he'd attempted to commit suicide in the shower. As my heart started to pound, he poured out the details of his shower... he was showering. He looked down and noticed that his foot was on the drain. What if the water had filled the whole bathroom, and "some crooks" had nailed all the windows shut. He would have died. Therefore, he must have been trying to commit suicide. AND, he recalled touching the hood of one of his classmate's hoodies at recess. He must have been trying to kill them, because touching the hoodie might have caused the hood to somehow become entangled on his hand, and his classmate would have been strangled. AND, he thought he might have dropped a paper in school-- on the floor. He was certain that the custodian would have slipped on it by that time, and have died from a broken neck. A-N-D, he recalled spitting in the grass near a picnic table at the soccer field. Both of the his teammates parents who were sitting at that table were surely dead, having slipped in his spit, and broken their necks.

And, there was a "black dot" or a speck that he could see, that he brushed off of his hand, and lost on the floor, and that I was probably going to slip on, and break my neck. Which would surely finish me this time.

 

Sooo... I felt his head, and told him that I'd be right back. I was going for the thermometer, even as he felt cool. He grabbed my arm, and begged me not to move. He didn't want me to slip, fall, and die (resulting in his life imprisonment) from a broken neck. I tried everything, and then finally, "let's go together," seemed to work. But, I had to go through his bedroom door first while he again checked the four corners, shut the door, opened it, checked the four corners, shut the door, opened it... "WHAT ARE YOU DOING?!?" He was checking for bombs and grenades. He very astutely told me that he *knew* there were no bombs and grenades in the corners, but that he had to check. What? Why? He told me that if he didn't check, that it felt like he was being squeezed, and that checking made the squeezing "less tight".

 

I don't drink, so there's no alcohol in my home. I don't, nor have I ever even so much as tried any drugs, so they certainly aren't in my home. I don't even keep any harsh, or dangerous chemicals on hand. My son has never... N-E-V-E-R behaved in any way even remotely similar to this. My mind was racing... I was thinking that someone gave him something, maybe put it in his water bottle. Or, is he having some sort of psychotic break? There was no fever. I left a message for the pediatrician on-call. I sat down with him (while his eyes darted to the four corners, and he started this bizarre pressing thing with his hands to his thighs. I started to explain that he hadn't attempted to murder anyone (he wouldn't hear of it, and insisted that he had). I asked when he started to feel this way, and he thought he'd been feeling this way for a couple of days... or feeling scared for no reason. He'd convince himself that he hadn't tried to "murder" anyone, and the anxiety & fear that he'd been feeling would lessen. Then, it would come back again. Finally, it just bubbled over (hence the scene in his room). Nothing I said would placate him. He understood that his actions were normal and not murderous, but he was convinced that because of the *thoughts* that it had to be murder. And, while explaining this, he was constantly jumping, and jerking, and begging me not to turn my head so quickly, or so far, or "like that", etc... So I wouldn't break my neck.

 

I started thinking that it was time to take a trip to the ER. Something had CLEARLY gone terribly wrong. And, I needed a plan to calm my son so I could get off the sofa where he was attempting to hold me in place so I wouldn't break my neck, or slip on some string that he suddenly recalled pulling off of his new shirt and flicking aside.

 

The pediatrician called, suggested that perhaps he'd had a nightmare (No sir, this was a living nightmare, but we were all awake), or that he'd possibly seen something violent on TV and was anxious, or that perhaps he was ill. Yeah, I went with door number three, because I couldn't believe that anything that I just described (with DS hanging onto my arm, and staring some harsh throat clearing sound every three seconds, eyes darting to the corners, alternating between tears and vigilance, and starting the strange pressing motion on my back (apparently, he was suddenly afraid that "lumps" were going to pop up on me, and he was trying to press them down) would be anything other than *ILL*! I mean, did he hear what I just described?!?

 

'Call back in the morning, speak to his regular pediatrician. Perhaps he might need some counseling if he's like this often.' OFTEN?!? He'd been like that for less than an hour, out of his whole nine years! In the time that it took to shower, my otherwise normal nine year old was transformed into someone else. Call back in the morning?!? I called the ER, spoke to a nurse, and she said it sounded like OCD. She suggested, since he didn't appear otherwise ill (no fever, no 'other' symptoms, that waiting for morning would be better, unless he seemed dangerous, violent, or suicidal.

 

So, he slept, eventually, and I kept vigil. He seemed okay (asleep), and I foolishly hoped that this 'episode' would be over in the morning. No such luck. He woke up on Tuesday as obsessed as went to bed on Monday night. Through out the day he developed what seemed to be an impossible number of obsessions, compulsions, and even picked up several more tics. He feared that "beer" was being splashed in his mouth from long distances away (carried by the wind). He thought that a fingernail that he'd chipped off (days prior) was in his throat. He feared that his breakfast was contaminated. He was afraid that an orange spot (that only he could see) was on everything... and that it couldn't be wiped off (it'd just wipe onto the next surface). And, he recalled ever more instances of homicide-by-nothing attempts that he'd made and was going to be jailed for, with no hope of parole. He was doing the harsh grunting/throat clearing noise, and pressing to prevent "lumps". And, by morning, it was the case that IF the "lumps" appeared, that somehow a madman was going to spring out of... somewhere, with an axe, and split me in half. "Lumps". An axe murderer. Time to head to the doctor. Getting out of the house was quite an affair. What, with checking for bombs, and him holding my hand and looking out for the tools of murder (lint, crumbs, imaginary specks, strings, etc...) that he surely must have planted to exact my demise by slip-fall-broken-neck-acide. :(

 

After a brief examination, it was decided that it appeared he had OCD and needed to see a psychiatrist. I got the list of approved psychiatrists from my insurance company, and started calling. Everyone recommended that he see a psychologist instead. So, I called back to get the list of approved psychologists, and they said I needed a "psychiatrist". OMG!!!!! I called back to the pediatrician... he had a thought. He asked if DS had been ill recently. Yes, he (along with a large portion of his classmates) had been ill during the 2nd week of school. He missed a couple of days with a fever, a sore throat, cough, stuffy nose... Seemed like a bad cold that passed quickly. He said I should bring him back in to check for strep.

 

He returned to the doctor's office today-- the rapid test was negative, so they did blood cultures. The Pediatrician explained that there was a controversial condition called "PANDAS" that is perhaps causing his sudden symptoms. That's how I stumbled upon this community. My son was sick, with a "cold" about 10 days ago. Now, out of the blue, he has severe OCD. I'm not yet able to wrap my mind around this. But, while I wait to find out if he's recently had strep/has elevated strep antibody titer (or whatever he called it), I'm trying to understand, and to find some shred of hope, that our "normal" will somehow be restored.

Link to post
Share on other sites
  • Replies 48
  • Created
  • Last Reply

Top Posters In This Topic

Hi--I am so, so sorry to read your post. You need to know that many, many Pandas kids will not "test" positive for strep via a throat swab. (Our d had sinusitis show up on an MRI -- we believe that may have been where the strep was hiding.)

 

Our own d had sudden psychological changes too and some OCD issues that remind me of your experience (for example she thought that poison had splashed up from outside the car and gotten into her mouth, etc. etc. it morphed into some very creative situations.)

 

If I were you, and was in the midst of what you are experiencing right now, I would do everything I could to be sure my son was safe (not going to hurt himself or others) and then I would get him to one of the Pandas MDs that are diagnosing and treating Pandas with success -- for their advice.

 

In the meantime, some of the best advice I ever received was to TRY a 30 day trial of full-strength antibiotics for my d. We did and it made a difference, almost immediately. Can you get that from your pediatrician, and/or ask your pediatrician to call a Pandas treating doctor to consult? Dr. L, Dr. B, two that many see. Here is the link to a list of doctors parents have seen:

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

Check out the information on: www.pandasnetwork.org -- alot of useful information there. Take care and be safe, if it is Pandas it can get better with treatment.

Link to post
Share on other sites

Although it is bittersweet, I'm glad you found this forum. We all have stories similiar to your own & in that you will find support and excellent advice here. It is very late here so I won't go into much detail as I need to get to bed, but I think most would agree here that in the meantime, while waiting for strep titer results, ask your pediatrician to start your son on antibiotics as a trial (zithromax & higher does Augmentin seem to be the the meds that are most commonly used). Some kids do not mount strep titers (my daughter, after nearly 6-7 months of chronic strep with positive cultures, did not/does not mount titers, but has PANDAS & responds to antibiotics (3 years and counting). The titers are not diagnostic, the response to medication can be. Some would recommend a steroid burst ( I do not know anything about dosing on this,as we have never needed this, but others will). Also in the meantime, share where you are located & others can recommend PANDAS specialists who may be geographically closest to you. Take action- do not wait on the titers, other infections can also trigger OCD & tics.

 

This is the greatest place to ask questions and find answers and support. Glad you found us,

 

Amy

Link to post
Share on other sites

Although it is bittersweet, I'm glad you found this forum. We all have stories similiar to your own & in that you will find support and excellent advice here. It is very late here so I won't go into much detail as I need to get to bed, but I think most would agree here that in the meantime, while waiting for strep titer results, ask your pediatrician to start your son on antibiotics as a trial (zithromax & higher does Augmentin seem to be the the meds that are most commonly used). Some kids do not mount strep titers (my daughter, after nearly 6-7 months of chronic strep with positive cultures, did not/does not mount titers, but has PANDAS & responds to antibiotics (3 years and counting). The titers are not diagnostic, the response to medication can be. Some would recommend a steroid burst ( I do not know anything about dosing on this,as we have never needed this, but others will). Also in the meantime, share where you are located & others can recommend PANDAS specialists who may be geographically closest to you. Take action- do not wait on the titers, other infections can also trigger OCD & tics.

 

This is the greatest place to ask questions and find answers and support. Glad you found us,

 

Amy

Must have been responding at the same time as T. Mom- so glad to see our responses include the same info.

Edited by AmySLP
Link to post
Share on other sites

this is exactly what happened to my daughter....totally normal and then suddenly living in a nightmare....so glad you figured it out faster than us....my daughter went for 3 weeks w/o knowing what was happening....there are different routes you can go...but, antibiotics are the first step and great that you figured this out so fast.

praying for you!

Link to post
Share on other sites

I am so very sorry for what you are going through. Please pick up the book Saving Sammy by Beth Malony. The book describes what she and her son went through getting help for pandas.

 

I will send you a private message. Check the upper right of this screen and you will see where you have access to private messages.

Link to post
Share on other sites

Hi, I just wanted to say hang in there, and to offer you support and an ear. Not too much advice here since we are only on day 13 of our nightmare. However we are also on day 3 of a 6 week course of ABX so I feel better- feel like we are moving in the right direction. I saw the article linked below on this forum and faxed it to my pediatrician. It really help to get my DS the ABX for the 6 week period instead of 10 days or 2 weeks. His rapid strep was negative but she decided to treat anyway while we wait for the other tests. I hope the link works, I am a newbie on this forum. If not look for a thread titled something like: IOCDF weighs in....

 

 

http://www.ocfoundat...79&terms=pandas

Link to post
Share on other sites

Thank you all so much for replying, and (unfortunately) understanding. More so than anything that I've read over the last two days, it helps to understand how this has affected others, and what I might expect, and that YES, he can get better! I'm going to call his pediatrician as soon as they open. If he'll at least start him on a strong antibiotic I can at least reassure my son that we've got an idea, and a plan.

 

One thing that I didn't mention in my first post that my son had Kawasaki's disease when he was five. So, there is some precedent for strep causing an autoimmune response in him. I don't know if that matters, or if anyone else has experienced similar, but I'm going to remind the pediatrician of that too.

 

Btw-- we're in Michigan.

 

Thank you all, again!

Link to post
Share on other sites

My son also has never presented high titres, so keep that in mind. In the meantime, many parents find that dozing with ibuprofen provides an immediate (albeit temporoay) relief. I don't have time to go into the details of why it works right now, but basically, it reduces the inflammation in the blood brain barrier which slows down the immune systems attack on the brain.

 

It migh give you a little peace while you're waiting on doctors.

Link to post
Share on other sites

Our younger son was diagnosed with Kawasaki's at 5 1/2 months old with level 4 aneurysms. By 2 1/2 years of age he was diagnosed with OCD and rage behavior. His older brother had a sudden on-set of OCD in 2009 and originally diagnosed with PANDAS and later found he was suffering TBI (Tic Born Illnesses/Lyme Disease). We then tested our younger son only to discover he too had Lyme Disease with co-infections of Bartonella and Babesia. It turns out all our children suffer from Lyme Disease and it was passed to them while pregnant. We now believe it was the chronic underlying infection that contributed to Kawasaki's Diagnoses. Diagnoses of Kawasaki's was based solely on aneurysms at the time. We also know he was exposed to strep at the time of Kawasaki's on-set.

 

Strep is often an obvious trigger and sometimes the only trigger. Although for many of us there are other chronic issues at play. Some of the chronic infections you'll want to check for with your Dr. are Strep, Mycoplasma, Lyme Disease plus co-infections. Most of us test for TBI via a speciality lab called Igenex. You would need to request a test kit from them in advance and bring it to your Dr. for authorization.

 

There are a few on the forum from the Michigan that can help with local Dr.'s versed in PANDAS and potentially an LLMD (Lyme Literate Medical Doctor) that can help look for other chronic infections. Wishing you all the best. Wendy

Edited by SF Mom
Link to post
Share on other sites

This Forum WILL be your Doctor

It has helped everyone that has been on here

including us.

There is a list of Doc's that are PANDAS Doc's

on here I think at the top, find one and call them

Dont mess around with a Doc that dont know anything about

PANDAS it is just waisting time.

We have been to Dr.k twice but I know therre are alot more now

who are all doing what they can for our kids

I am sorry..

Just remember that he CANNOT control this... my Daughter started when she was 4

she is now 7 and as for now her PANDAS is gone

 

Tracie

Link to post
Share on other sites

Please join our small Michigan PANDAS group. I'll pm you the details. Look in the upper right hand corner of this page for your pm's.

 

You are not going to find much help in MI. Your best hope is that your pediatrician has recognized the strep relationship. I would highly urge you to at least consult w/ one of the PANDAS experts, so you can get well on your way to treating this. It took us over a year to get a diagnosis for my son.

 

The most important thing I can tell you is you do NOT have to have positive strep cultures or titers for a PANDAS diagnosis, so if they come back negative, do not let your doctor steer you elsewhere. Your pediatrician should run ASO and antiDNAse B titers. There is a lot more to be done but you are doing your homework and you will get there and quickly.

Link to post
Share on other sites

I talked to my son's pediatrician this morning, and he won't start him on antibiotics, because his strep tests were negative... He did say that he'd talk to an infectious diseases doctor and ask if there's anything else to consider. Even IF he's right that it can't be PANDAS, because he hasn't shown any signs of having strep, I'd rather be safe than sorry. If there's even a chance that it could help my son, I'd prefer to take it, even if it turns out to be fruitless. He knows that I already had an appointment with a counselor for next week, and I get the impression that he thinks this is the only avenue of help for my son.

 

I'm so frustrated. But, I'm going to forge ahead, and seek a 2nd opinion with a doctor who is more familiar with PANDAS, or other autoimmune disorders. Something has triggered this 'episode' (for lack of a better term), and I don't want him suffering at all, least of all due to lack of knowledge. Given the nature of my son's obsessions, I have a hard time believing that counseling, alone, is going to alleviate his symptoms.

 

I checked the list of recommended physicians, but I didn't see any listed for Michigan (unless I missed it-- I'll double check). I guess I'll try to start with neurologists?

Link to post
Share on other sites

eclairuse

 

Hi- I don't have a lot of time- so I will be blunt (as I would want this spelled out to me)...

 

I have two daughters with pandas, who both had an overnight onset of ocd. We were lucky, and had positive cultures- but, the onset of ocd can happen up to 6 to 8 weeks after infection (this is according to Dr Swedo and the NIH), and therefore a parent and physician can miss the link.

 

Most parents on this forum have found it necessary to travel (some great distances) to see a doc well versed in pandas. For us, this means traveling to Wash, DC from where we live now (NJ). Many travel to Chicago and Connecticut. Hopefully the parents closer to Michigan will offer you some advice on closer locations.

 

In many cases, like mine, kids with pandas/ sudden onset of ocd will need an aggressive combination of medical intervention (antibiotics, steroids, IVIG and/or pex) and therapy. I would be sure to contact IOCDF (international ocd foundation) to get a psychologist skilled in ERP (exposure and response prevention therapy), as most are not, and this is the only therapy proven to work with ocd. Also, please do your homework on pandas kids and psych meds, before trying psych meds (as you will find it easier to get them than antibiotics>)

 

You have a lot of work/ homework to do- but the good news is, your child will get better quickly. (the quicker you get to qualified specialists, the quicker you will see improvement).

Link to post
Share on other sites

I hate to be the bearer of bad news but you are going to have a hard time finding help w/ the locals here in MI. Wish I could have better news. Most of us here have been from dr to dr. No help. Call a PANDAS expert. Dr K in Chicago and Dr T in New Jersey do phone consults. Dr B in CT is an immunologist. He doesn't do phone consults. Don't know if Dr L is taking on new patients at the moment.

 

Please understand, strep confirmation is NOT necessary for a PANDAS diagnosis. My son has never had a confirmed case of strep. He was never tested in a timely manner when he presented w/ pharangitis symptoms. He has never had anything but normal strep titers, either. He has been diagnosed as having PANDAS by Dr K and Dr T.

 

Don't give up and don't let a pediatrician who knows little about PANDAS deter you.

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...