Who Diagnosed Your Child With PANDAS?

[Stephanie2]

I'm just wondering how everyone found out that their child had PANDAS. I have to say that it took 3 years before I figured out by myself that my child has PANDAS. Back in Feb of this year he regressed at the time of a throat infection (no one did a swab, they just said he had a throat infection...????!!!). This episode turned into tics and ocd behavior (which was brought to my attention by his OT). It wasn't until 3 months later that a 'doc in a box' did a random throat swab b/c he had a swollen lymph node on his neck. My son didn't even have a sore throat. It was over the next few weeks that I happen to put it all together (tics, ocd, positive strep culture) and I was only able to do THAT because I happen to have heard about PANDAS and knew what it was! I mean, 99.9% of the population doesn't know what PANDAS is.

 

So it got me thinking. How many more years would my son and our family have had to suffer before a doctor would have put this all together before my son would have been diagnosed? And how many more children are going undiagnosed. The number has to be HUGE! Then to top it off, my SIL has been telling me that both of her girls (aged 5 and 6) are doing strange things out of the blue: separation anxiety, depression, sensory issues, ocd-type stuff. She did not get them cultured and the behaviors finally faded on their own, but we DO know that they were exposed to strep by both of my boys. So there you go, two more girls undiagnosed right in my own family! Then she (my SIL) goes on to tell me that her cousin was extremely violent and emotionally unstable growing up and he had all sorts of ear problems and tonsil problems. Then he grew out of it around puberty and he is now the most calm, loving individual that she knows!!! She said that her whole family has always been baffled by his change in behavior.

 

Point is: when I read your posts it seems clear that most of you got a dx from some type of practitioner and it seems that I am in the minority among those who discovered the dx on her own. It makes me think that we/this group is the TIP OF THE ICEBERG; the lucky few who even know what our children are dealing with!

[ajcire]

I actually suspect most people figured it out on their own and brought it to the attention of their physician... but maybe I am wrong.

 

I definitely pieced it together myself after ds went through a bizarre and random thing of refusing to sleep alone and started having sudden rages that would come and go quick but were intense and directed mostly at me and his sister... his tone chanced and he seemed sad all the time. It started 2 days after his sister had strep.... after a few weeks of this I was in tears and exhausted and googled sudden sleep anxiety and children and up popped pandas... it took me 2 seconds to gasp when reading it... when I saw strep right away it caught my attention.. .then it said that often these children are brought to the dr. as little ones with an eye blink or other tic and told it is nothing.. aha... at 2 I took my ds in for an eye blink, at 4 for a coughing tic... then the same year and the first year that we had strep that I was aware of in our house (me, ds and dd had it) he had sporadic bouts of hoarding garbage that we at the time found a bit comical, handwashing just enough for me to notice it was a lot but not enough to cause alarm, frequent urination... his teacher had just told me he was using the bathroom a lot... and he didn't have a bladder infection....good at math.. I mean I felt like it was so clear that any dr. should see it.. and my ds is so mild I can't convince my dh... but to me it was sooooo obvious.

 

I took this newfound info the dr. so sure he would see it too and he told me that I was being crazy, pandas is not real and ds was not sleeping alone because it was a behavior issue that we needed to just deal with and let him cry and scream it out... I asked the dr's in the practice because I knew my son and knew this was not a regular behavior issue... this was a mellow, well behaved kid before this... finally one said he was believed in it but it was out of his realm and referred me to a dr elsewhere... who was helpful and felt it was indeed pandas... bloodwork with titers didn't confirm it but he said all signs pointed to it regardless. I learned her titers meant nothing anyway.... I JUST now found out that the one dr. in my regular office I didn't ask... will treat for me so I don't need to go another dr....

 

If I didn't google, I never would have figured this out..I would have probably headed to a child psychologist for the sleep stuff at one point and unless they pieced it together who knows...

 

 

Ok, edited to add that I hadn't seen the poll part when I posted this.

 

 

 

I'm just wondering how everyone found out that their child had PANDAS. I have to say that it took 3 years before I figured out by myself that my child has PANDAS. Back in Feb of this year he regressed at the time of a throat infection (no one did a swab, they just said he had a throat infection...????!!!). This episode turned into tics and ocd behavior (which was brought to my attention by his OT). It wasn't until 3 months later that a 'doc in a box' did a random throat swab b/c he had a swollen lymph node on his neck. My son didn't even have a sore throat. It was over the next few weeks that I happen to put it all together (tics, ocd, positive strep culture) and I was only able to do THAT because I happen to have heard about PANDAS and knew what it was! I mean, 99.9% of the population doesn't know what PANDAS is.

 

So it got me thinking. How many more years would my son and our family have had to suffer before a doctor would have put this all together before my son would have been diagnosed? And how many more children are going undiagnosed. The number has to be HUGE! Then to top it off, my SIL has been telling me that both of her girls (aged 5 and 6) are doing strange things out of the blue: separation anxiety, depression, sensory issues, ocd-type stuff. She did not get them cultured and the behaviors finally faded on their own, but we DO know that they were exposed to strep by both of my boys. So there you go, two more girls undiagnosed right in my own family! Then she (my SIL) goes on to tell me that her cousin was extremely violent and emotionally unstable growing up and he had all sorts of ear problems and tonsil problems. Then he grew out of it around puberty and he is now the most calm, loving individual that she knows!!! She said that her whole family has always been baffled by his change in behavior.

 

Point is: when I read your posts it seems clear that most of you got a dx from some type of practitioner and it seems that I am in the minority among those who discovered the dx on her own. It makes me think that we/this group is the TIP OF THE ICEBERG; the lucky few who even know what our children are deling with!

[Suzan]

I questioned whether I should put myself, our ped neurologist or Other. Our Ped Neuro taught me about the condition where I had never heard of it before. But once our titers were low, he dismissed it. I kept on with the research and this forum and got Dr. Cunningham's test which was positive and then I got our Dan! Ped on board. I believe my girls have had PANDAS since they were very young (before age 2) and if caught earlier we woul d have all had an easier life so far.

 

I did select myself though because I was the one who kept pushing and searching and following what I came to know in my heart.

 

Susan

[dcmom]

My dd had 4 weeks of unmanageable behavior. I thought we were all going crazy! Then a parent from her class emailed a heads up that her daughter had been diagnosed with strep, but didn't have the typical symptoms. I googled strep and behavoir problems- dd's story was there.

 

I took her to the ped, told them her throat was sore and she needed a strep test (had been there the week before for behavior and urinary issues). The quick was negative. When the doctor called me about the positive culture, I told her I thought Julia had pandas- she said no!

 

I knew Julia had it. We pursued a psychiatrist, and 2 neurologists who worked with pandas- they confirmed my diagnosis.

[Worried_Dad]

We were lucky enough to find (via a friend at work) an wonderful local DAN doc who happened to be a certified Lyme specialist and thought our son might have Lyme disease. This guy refused to give up, kept running tests (at the same time our regular family doc and several specialists told us our son just had "school avoidance issues" or a psychogenic movement disorder), and finally found the elevated ASO titer and diagnosed ARF and SC. About 10 months later, after attending an Autism conference where Dr. Swedo spoke, he changed the diagnosis from SC to PANDAS.

 

Unfortunately, this awesome doc passed away last October. Since then, we've seen an endless succession of local docs, trying to find somebody to help. No luck yet. They all give us the "PANDAS isn't proven / doesn't exist, it exists but you haven't proven your son has it, he might have it but there are no treatments, we're not equipped to deal with that" variations on the theme of why they can't help. ARRRRGHHHH!!!

 

So a general practitioner gave us the dx, but now we're having to do all the research and try to "prove the diagnosis" to all other local docs (neurologists, rheumatologists, infectious disease docs, child psychiatrists). VERY tiring!

[monarchcat]

My son's behavior changed after his 5th birthday, then he developed tics around age 6 which was dismissed with a simple, "many children have tics, it will fade around puberty" by his pediatrician. When he was almost 8 he developed a sudden, severe new tic after being tic-free for several months and I started researching what could cause a sudden tic exacerbation. I found PANDAS and started putting the pieces together culminating with the Cunningham blood test this past August. When I suggested PANDAS to his ped back then (we have since switched) the dr agreed to check titers, but only checked ASO and when that came back extremely low (5 weeks following a pos. strep test no less) he discounted PANDAS entirely.

[ShannonOtown]

It had been 3 years since my son (now 11) was having so many symptoms. I took him to the eye doctor twice for his blinking, then to the allergist numerous times for the blinking, the urologist for his urination issues (had surgery to enlarge his pee-pee hole), the pediatrician for allergies (coughing, upper resportory issues, etc). Never seeked advise for the hand-washing and ocd items. It wasn't until this past July at 2 am in the morning, after a rough night of my son going to the bathroom non stop, that I finally found the answer. I was determined to seek the internet for the answer and I wasn't going to bed until I found what I was looking for.... I Googled so many searches, but I finally I had my big moment when I seached "frequent urination and OCD". Don't ask me why I put 'OCD', but somewhere in the back of my mind I thought my son's perfectionism and love for routine was a little excessive for his age and the hand washing had become out of control. I'm sure we all had that moment of Oh My God ... the screen results filled with the word PANDAS! I couldn't believe there was an actualy name that matched my son to the tee. So 3:30 am on my couch, in the dark in my living room, I had put it all together... sitting there crying and shaking trying to wrap my head around the last 3 years. And we all know what happened next.... non-stop research, visits to the pediatrian with the puzzled looks and suggestion to go to another urologist, trying to find a specialist, etc. Finding this forum has been my anchor (I only read and never post) and getting lucky enough to grab an appt with Dr. Murphy in Tampa, FL. So many questions still go unaswered, but atleast we know we have so many parents pushing for results.

[EAMom]

I checked Myself...although it was probably more my dh (with his persitant calling) than me.

 

Our dd's behavior started to change in late Jan 08 after a fever (we later learned several kids in the class had strep). The first thing I saw was lots of tantrums and "difficult" behaviors. At about that time she decided she wasn't going to eat breakfast anymore. I thought perhaps she was stressed b/c she was starting speech therapy (which she didn't want to do-lots of fear and anxiety there) and b/c my husband was traveling for work a lot in feb. (Perhaps she missed him and I needed better parenting skills). Towards the end of February and early March her behavior deteriorated even further, following 2 tooth extractions (for orthodontic reasons). She stopped playing with the other children at school (in fact her behavior was so altered that her teacher thought she had been molested) , she developed strange demanding and defiant behaviors, she became depressed and considered herself to be a "bad person", increased sensory defensiveness, and most frighteningly, she developed symptoms of full blown anorexia nervosa. She would ask before each meal, "does this have sugar in it?" "will this make my stomach grow?". She began elaborate rituals of measuring her wrist, legs, stomach to make sure she wasn't fat. She weighed herself repeatedly and became obsessed with getting a new scale when it "broke" (we disabled it). She would eat 1 small meal a day. She dropped from 50 pounds to 42 pounds in a 2 week period. We were in a panic since the eating disorder clinic (outpatient appointment) didn't have an opening for several weeks (we were worried she wouldn't last that long). My dh called psychiatrist after psychiatrist, trying someone qualified and willing to treat a 7 year old with anorexia nervosa. One psychiatrist said she sounded just like a typical case of anorexia nervosa except for her age. To make a long story short...after calling 20 doctors (mostly psychiatrists) the dh finally got in touch with an eating disorder specialist who said "check her for strep". Confused, we googled "strep" and "anorexia nervosa" and learned about PANDAS. This was 2 mo. after the fever and onset of behavior change for her most severe pandas episode...although we now realize she likely had early "undiagnosed" episodes of PANDAS (urinary frequency, handwashing) when she was younger off and on for years.

 

BTW, we still still encountered resistance in the hospital b/c our dd's ASO/anti-dnase b were low/normal. Despite her positive cultures (and her sister's positive culture), many docs still took the low ASO/anti-dnase b as "evidence" that it wasn't PANDAS. A year later, her CaM kinase ll was in the high end of the pandas range (when not in an exacerbation), while her ASO was 17 (undectable)...this is after 1 year on antibiotics. When we took it again during an exacerbation (after the flu) last June, her levels were the highest Dr. Cunningham had ever seen 253%...the very high end of the SC range.

[LNN]

Our LMFT (Licensed marriage & Family Therapist) diagnosed my son. We'd never heard of Pandas. But we started seeing the LMFT for severe anxiety and tics following a strep infection. Our pediatrician dismissed the dx as did two neurologists. We fired the pediatrician and the new one was willing to entertain the idea (eventually agreed it was infection-triggered but was only willing to do episodic abx). 10 months into the nightmare, we found Dr Cunningham and had our "smoking gun". We then went to Dr Latimer and after a T&A and PEX, are hopeful we have the upper hand on this thing.

 

BTW - my son's ASO/anti-dnase titers were "negative" three weeks after the rapid strep test turned positive in under 30 seconds and he had white blisters on his throat. I know titers can be convincing, but in our case, they have zero meaning. Our Cunningham CAM Kinase II results were 183% above normal and ds is on the low end of SC.

[smartyjones]

I am so, so thankful to the behavior therapist - an RN with psychology training - who diagnosed him. Otherwise, we would have tried to treat him behaviorally for years! She wasn't so helpful with practical solutions but man, am I happy she was on the ball with a diagnosis.

 

He's 5 and I never would have characterized him as difficult; I said he had a "defiant streak" and "more tantrum prone than your average child." I used to laugh that he was my "bipolar genius". He's always had an stronger than normal attention span and has phenomenal visual discrimination - not to the point of worrisome just noticeable different than his age group. And could get irritated quickly but cool down just as quickly. All this ramped up at age 4.5 with severe separation anxiety, school phobia and odd behaviors - chewing shirt, repeating phrases, nonsense words.

 

He had strep at 22 months, diagnosed only b/c he vomited and his brother had a postive rapid the day before. I question now if he ever really got rid of that strep and those behaviors have been pandas all along just manageable and what we thought within the range of normal for a 2 and then 3 year old.

 

The pediatrician suggested medication "to get stuck thoughts out of his head" and a play therapist. I thought how on earth can medication be the first choice for a four and a half year old. The play therapist saw him a few times and was excellent at watching him and ticking off all the diagnosises she didn't think it was. A friend had suggested yeast. I was discussing this with the therapist who was dismissive of that but then said, "You know, there is this strange thing called PANDAS. I don't know that much about it but it's OCD triggered by a strep infection. The behaviors you describe lean toward OCD but he's awfully young for that." She later told me her own child had had RF probaby 15 years or so ago and she'd had to fight with drs on that.

 

I thought it was not likely b/c he hadn't had strep for 2.5 years and was quite healthy compared to peers. I thought she was just dismissive of yeast. We had his titers checked and they were high, then a positive throat culture. After all that the peditrician said, "I think you'll find the strep and the behaviors are unrelated." I don't think I'll ever forget those words - that was the last time we saw her. Our new ped put him on Keflex and after 3 days he was back to his pre-pandas self.

 

I feel so indebted to that therapist b/c our "not-knowing period" was only about 3 months. We still deal with the illness but at least we have known what we were dealing with.

 

~Kathy

[Lena_Dmom]

Our nutritionist, Kelly Dorfman, who many of you know suspected PANDAS. I had strep last Christmas but we never tested our son... Then in early Spring the "classical" both-eyes blinking started. We took him to see his at-that-time traditional pediatrician who said "Seasonal allergy." After every allergy drug failed... we were not sure... but then tics went away and we thought "phew... bad dream."

 

Then in June tics came back... along with sensory sensitivity... An appointment with our dev. pediatrician came up - she examined and said "You're thinking Tourett's, aren't you? It is not. Just seasonal allergies."

 

I emailed Kelly who we have been seeing for a year and she immediately said "Check him for strep NOW". Luckily we have already switched to a DAN! pediatrician who did not put any fight and immediately ordered blood work. Fortunately or unfortunately, depending on how you want to look at it, his titers came in very high. So he was put on abx.

 

We're VERY early in the game and the abx that we're on isn't working for us (in fact we're seeing some worsening of symptoms after being on it for almost 2 weeks) but we feel fortunate to have the dx. Even though our kid does not match every symptom (yet! I have to say because in the last couple of days it is like he got a hold of a check list for PANDAS and started going through it developing and checking off every darn symptom!) I emailed dr. K and he confirmed - that given all that I've described to him - he couldn't think of any other dx that would explain our son's situation - PANDAS it is.

[P_Mom]

I "diagnosed" PANDAS myself....but, of course, I needed verification. Pediatric neurologist didn't believe me..pediatrition thought it was PANDAS, but, didn't have a clue what to do. Didn't get an "official"diagnosis of PANDAS until almost a year later after onset by Dr. K...and subsequently Dr. Latimer. However, in the year before official diagnosis...I pushed and searched until I found someone to put my kids on prophylactic antibiotics until I got to Dr. K, because I just knew it was PANDAS.

 

I think it is that way for the majority of us.

[Megs_Mom]

I diagnosed her 3 times. When she was three, I googled "sudden onset OCD" - and it was like Megan was on the screen. I was reviewing all her records recently, and found that her pediatrician did not even spell it right when I brought it up when she was three! Then I spent a year from age 7-8, doubting myself. If not for some moms, Dr Williams at Yale, and a return visit to a Neurologist who finally said "yes, see her piano finger tremors" - I might have never treated this right. So I checked myself, but it was really a village.

 

I am a google mom, and proud of it.

[Kayanne]

I checked off dd's pediatrician because we went to see him regarding her complete behavior shift in school, and at home...emotional lability, ADD, mostly obsessive thoughts that were causing her to not talk, tell on herself, and make decisions impossible.

 

My husband and his family have a history of anxiety/panic disorder and a little bit of OCD, so we were fully expecting him to steer us toward setting her up with therapy, after the typical tests.

 

The pediatrician said, "I don't want to open a can of worms, but there has been a suggested link to repeated strep infections and OCD and ticcing."

 

He said he would run the titers and other blood work, if the titers were high, and everything else was normal, then he would refer us to CHOP. He gave us the general idea of PANDAS, but he never used the word. He had even said that he had seen a case where a boy had began to have a severe arm tic after strep. When I asked him what/if any treatments there were, he said PEX.

 

In the meantime, we were to set her up with counseling.

 

Titers came back high...we went to CHOP...not very helpful...wouldn't give a PANDAS diagnosis because she had yet to show a waxing and waning pattern.

 

I found this forum that weekend; posted and got awesome advice about Dr. Latimer.

 

We went to a pediatric psychatrist who said it was PANDAS, and that same week we saw Dr. Latimer, and she treated with prednisone an prophylactic antibiotics.

 

DD is now showing no signs of PANDAS, and is currently on pen vk.

 

~Karen

[L Haven]

I think you may be right, Erica. I wasn't sure which to check. I found a paragraph about PANDAS during an exhaustive web search (this was 2003), printed the page and took it to our ped. She made the appointment at Children's Hospital, where he was officially diagnosed. Anyway, I checked ped neurologist.

 

Lena