Jump to content
ACN Latitudes Forums

Parents of Preschool PANDAS kiddos:


PowPow

Recommended Posts

It is very difficult to decipher "weird yet normal" 4 yo behavior from PANDAS/PITANDS sometimes.

We have several other children- so I ought to know strange 4 year-olds by now!

I have a very, very hyperactive preschooler who enjoys rough sensation (squeezing, pinching, full-out jumping on other people!) yet is getting very particular about clothing. (too stripe-y; too pink; does not feel right; not straight enough, etc.) I have a stack of underwear every morning that I have to go through until we find the "right" ones. Socks, too-- thank goodness for summer!

She is starting to scream for me (about 75% of the time)when I leave her- even to go to the next room.

She must use a huge wad of tp every time she goes to the bathroom (she says she cannot touch her bottom- though I think that is not totally abnormal for little ones.)

She told me she cannot get "bad angels" out of her head. She saw these "angels" weeks ago on a tv show that her older siblings were watching and she should have not have seen- it was a spooky scene with concrete angel fountains in a cemetery. She will not go too bed at night due to the "bad angels". She has also told me twice recently of being able to think of nothing but a certain toy-- like when we are at church and she says- " I can't stop thinking of my plastic egg".

She does flop on the floor sometimes when she is asked to choose between grape or strawberry jelly or other easy things-- "i just cannot decide," she yells.

If her braids are not exactly even in height and tightness-- the whole family better watch out!

No known strep history for her.

There probably is more, but I cannot think of it right now.

My older girls with PANDAS suffered from such clear cut horrifying OCD- it was obvious there was a problem.

I do not know if this warrants a PANDAS expert visit- or if not, GREAT (I would prefer not to spend the $$$) but where do I turn? I asked on the adhd forum weeks ago and got zero responses.

Edited by PowPow
Link to comment
Share on other sites

Like you, we had an older child with clear cut issues and a younger one with "hmm..." symptoms. She stayed just under that "need to take action" radar for about 2 years while we dealt with more immediate problems with the older one.

 

One thing that helped us was some quantifiable blood work - C3d immune complexes that were elevated (indicator of general immune system activation), C3a and C4a immune complexes (sometimes rise with lyme and/or mold), vitamin and mineral panels(deficiencies can cause many issues), CBC panels, yeast/candida blood work, etc.

 

DDs blood work "proved" that her immune system was reacting to something. Over the course of a year, her C3d went from 25 to 50something to 96 (above 8 is high). Now, after 8 months of treatment with an LLMD, her C3d has dropped down to 23. Her C3a was very elevated (a possible indication of lyme which coincided with an indeterminate Igenex report) and her C4a was normal (often coincides with a reaction to lyme or mold). Her ASO and Anti-Dnase titers were normal. Her eosinophils were normal, lessening the picture that some sort of food allergy or respiratory infection was causing her reflux...

 

No single blood test confirmed a specific infection, but it did give me that quantitative data to say that her behaviors were more likely driven by a physical cause rather than just fringe kid behavior. When we put her on abx, her behaviors responded and calmed down very quickly, further confirming that link between behaviors and infection.

 

So I'd suggest discussing some blood work with the doctor on your team who's most Pandas supportive. It may help clarify that gut feeling you have.

Link to comment
Share on other sites

Thanks- I am thinking that is the direction I need to go. I do not know if our particular PANDAS doctor will do any of this- it has never been done for my other kids-- though, again it was not necessary. I do also "have" an LLMD- my oldest PANDAS daughter actually was treated for lyme & babesia first- before the auto-immune tx of PANDAS was undertaken. We are getting labs for food allergies drawn tomorrow actually- skin testing was done and was positive on a few things. So we are trying to get the whole picture. She is an allergy-asthma kid ;)

I could ask my family doctor-- if he does not think I am nuts already! Anything the layperson can read about immune testing that can make it so I look like I know what I am talking about when I go ask him?

Thanks, LLM.

Link to comment
Share on other sites

PowPow-

 

My younger dd was in Kindergarten when pandas presented the first time. I know how much your family has been through, but I am going to be honest here, it sounds very suggestive of pandas.

 

The biggest thing is, we DID notice a change. It was one day I had a "normal", happy, carefree five year old, who was a total joy to be with. The next day, one symptom appeared, that caused her lots of frustration, and puzzled me (although I wasn't too concerned). Within 3 weeks, I had a different child; one that was miserable, and very difficult to deal with.

 

The following were her symptoms:

 

urinary frequency

feeling of not being "dry" or being "wet" down there after urinating

making multiple consecutive trips to the bathroom, extremely frustrated

using lots of toilet paper

wiping, and staying in the bathroom for continually extended periods of time

difficulty finding clothes, socks and underwear to fit, eventually progressing (in stages) to only being able to wear pajamas (and one pair, at that)

difficulty making decisions, especially noticeable with food

losing taste for previously favorite foods, eating very little, no food appealed, yet hungry

difficulty sleeping, bad dreams, night time accidents

fear of ghosts, seeing ghosts, looking extremely scared much of the time

I could see it in her eyes- hard to explain

MAJOR separation anxiety- very hard to get her to school, playdate, party, etc

 

All of these symptoms manifested with extreme frustration, tears, temper tantrums, panic, etc. It was not like, calmly, "Mom, these panties are not comfortable." It was "THESE PANTIES DO NOT FIT!!! I HAVE NO PANTIES!!! I WANT TO DIE!!! I HATE YOU!!! IAM NOT GOING TO SCHOOL!!! ETC.

 

Gosh- how our lives have changed, and how I have learned so much since then (unfortunately)- but it was all ocd, and while I believe in SOME accomodation, still- we accomodated WAY too much. We didn't know any better then :(

You know pandas- if you are questioning it- I am thinking there is something there.

My little on had dramatic onset first, and I came up to speed on pandas quickly, but it still took us 6 mos to recognize it when it reared its head in my older daughter; due to some denial, a milder onset, and ocd that I was not used to.

The good news (if there is any) is that you are set up, and a longer course of antibiotics could calm things at this point. We use the same doc, and when we went in with my older, milder (at the time) dd, she was VERY open to a month long trial of antibiotics, followed by steroids, if needed.

 

Feel free to PM me, or email me. I am thinking of you- and would love an update on your other two :)

 

Eileen

Link to comment
Share on other sites

My son was sudden onset on his 5th birthday. All I can say is what you explain, I could see that happening with him at the time (except for the girl references like braids :) )

 

I also have a daughter who just turned 5 in June. She does not act in the ways you describe.

 

You say she has no known strep history. What tests show that? Keep in mind some kids never have rise in titers. Does she has a history of recurring ear infections, bronchitis, etc?

 

Have you seen the thread OCD in young children?

http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

Link to comment
Share on other sites

This is a struggle we deal with regularly, and the truth of the matter is, your gut instinct is the best way to tell.

 

Our son was around 20 months old when he woke up one day suddenly the spawn of Satan. It was so sudden, we all made jokes that someone must have slipped him "the memo" that his terrible twos have arrived! All of his initial symptoms, the speration anxiety, tantrums, aggression, particular about food were ALL developmentally appropriate. We struggled for 6 months letting everyone convince us that it was the terrible 2's and that boys are just "harder" (we didn't have issues like this with my daughter). He'll be 4 next month, and we still second guess normal vs pandas.

 

Looking back, it seems so obvious now, but we still struggle as his symptoms change - and they do, as he becomes more aware and verbal, the aggression has subsided somewhat and he's more verbal about what's wrong (not that it can always be fixed, and there's still tantrums...they're just more verbal.). We started looking at it on a scale of 0-9.

 

For example, several of his issues revolve around food. His food has to be on his plate in a particular way, most 4 year olds don't like their food "touching" so no biggie right? A "normal" kids reaction to his food touching might be on a scale of 0-3, no big deal, or a little upset but they get over it, especially if you fix the problem (3 being a particularly challenging "normal" child. A 4-6 might be an extended tantrum, even if you fix the problem, lasting well over a "normal" tantrum, even if you ignore it, don't give attention, etc. This is already NOT normal. This is where my son "lives" when he's exposed to strep or coming down from an episode. A 7-9 is full blown "crazy" as we call it (not quite PC I know, but hey) - complete refusal to eat from that plate, the food needs to be thrown away, and in the cases of a 9, won't eat even a brand new plate of food offered to him. These are the rages that usually turn violent (although we see some in the 4-6 range) and can last until he just passes out from sheer exhaustion.

 

Basically, for the younger set, a lot of the symptoms are developmentally age appropriate behaviors, just jacked up on steroids with a red bull chaser. We describe his hyperactivity as equivalent to freebasing pixie sticks.

 

Simple things like bedwetting is questionable in our kids, many folks would say lots ofm4 year olds wet the bed occasionally. And that's true, but you know your kids best, and in our case, our son never wets the bed...ever. Every time he starts wetting the bed, he has tested positive for strep ( it's been one of our most reliable markers since he's asymptomatic)

 

I would start logging some of her more quirky behaviors, be honest and see where you'd rate her. (PM me if you want a copy of the spreadsheet we used to do this). Compare her reaction (and how you handle it) compared to how a friends child would react in the same situation. We struggled at first because we found ourselves doing all sorts of jumping through hoops to prevent tantrums, so we had to stop so we could really evaluate.

 

I'm sorry that you're going through this, but it does sound to me like a case of PANDAS. It's tough on all the families here, but it is especially tough for the younger ones where their behavior changes aren't as clear cut. I think that's why so many kids are missed early on, because it can look like "normal" behavior.

 

Good luck, and we're all here for you!

 

(typed on my iPad, so please forgive the typos!)

Link to comment
Share on other sites

LLM---I think PowWow and I share the same pandas doctor.....good luck getting this doctor to order ANY of the tests you listed. I have been asking for them to be run for almost a year, and have been told repeatedly..."they will not be helpful."

 

Like you, we had an older child with clear cut issues and a younger one with "hmm..." symptoms. She stayed just under that "need to take action" radar for about 2 years while we dealt with more immediate problems with the older one.

 

One thing that helped us was some quantifiable blood work - C3d immune complexes that were elevated (indicator of general immune system activation), C3a and C4a immune complexes (sometimes rise with lyme and/or mold), vitamin and mineral panels(deficiencies can cause many issues), CBC panels, yeast/candida blood work, etc.

 

DDs blood work "proved" that her immune system was reacting to something. Over the course of a year, her C3d went from 25 to 50something to 96 (above 8 is high). Now, after 8 months of treatment with an LLMD, her C3d has dropped down to 23. Her C3a was very elevated (a possible indication of lyme which coincided with an indeterminate Igenex report) and her C4a was normal (often coincides with a reaction to lyme or mold). Her ASO and Anti-Dnase titers were normal. Her eosinophils were normal, lessening the picture that some sort of food allergy or respiratory infection was causing her reflux...

 

No single blood test confirmed a specific infection, but it did give me that quantitative data to say that her behaviors were more likely driven by a physical cause rather than just fringe kid behavior. When we put her on abx, her behaviors responded and calmed down very quickly, further confirming that link between behaviors and infection.

 

So I'd suggest discussing some blood work with the doctor on your team who's most Pandas supportive. It may help clarify that gut feeling you have.

Link to comment
Share on other sites

PowWow---you have described my "pandas" child to a tee. All the "quirks" that we just rode the waves on. That being said, I wonder if any of it may have just been picked up by your 4 year old from hearing/seeing your other two dd's in their worst days? I also still wonder if we are even pandas.....antibiotics don't help us a lick.

Link to comment
Share on other sites

Always been on the fence about our youngest, whose symptoms sound alot liek your daughter. Her symptoms are so wishy-washy too (typical 4 y/o behavior or PANDAS), whereas out 7 yr old PANDAS daughter's onset was much more distinct after nearly 6 months of difficult to erradicate strep. Here's how I handled it this time-I put my little one on the ABX for a trial (I should say she was followed by Dr. B for nearly a yr. b/c he was convinced and had ABX in my stash for her just in case. I think it's hard b/c no one wants to have more than one child afflicted with this, but I am now relieved to have my sweet 4 yr old back, not the screaming possessed child I've had for a few weeks. We are only 4 days into zith with her. It was like turning off a light swithc with behavior change for her in 24 hrs after 1st dose. Can you trial the ABX with her-maybe with your pediatrician on board to give ABX for trial before seeing the PANDAS specialist? No sture how long I will keep he on the ABX. We're back in school, so maybe through winter. I still don't want to say she has PANDAS, even though her positive reaction to the ABX is hard to deny.

 

Amy

Link to comment
Share on other sites

  • 3 weeks later...

Just a little preschooler update:

My 4yo has been much better the past few days. A few things have changed.

1. She is sleeping better at night- not really sure why- I just started putting her to bed 1/2 hour earlier 2 weeks ago and she is sleeping longer. My mom always says the "sleep begets sleep" ~ if you are overtired you will not sleep well; I see that evidenced here.

2. She had an asthma attack last week that landed her in the ER. It was discovered that she had pneumonia as well. That bought her a hospital stay, 2 doses of IV steroids (decadron and solumedrol), IV rocephin & IV zicef (ceftin!). She came home with steroids (30 mg x 3 days) and a z-pack.

She has been home a week and the last few days have been so much better.

Coincidence? Finally maturing? Who knows?

Yesterday she was at her grandparents and they even mentioned to me (without my questioning) how much calmer she is.

So now, I watch and wait for it to recur...

Edited by PowPow
Link to comment
Share on other sites

2. She had an asthma attack last week that landed her in the ER. It was discovered that she had pneumonia as well. That bought her a hospital stay, 2 doses of IV steroids (decadron and solumedrol), IV rocephin & IV zicef (ceftin!). She came home with steroids (30 mg x 3 days) and a z-pack.

She has been home a week and the last few days have been so much better.

Coincidence? Finally maturing? Who knows?

Yesterday she was at her grandparents and they even mentioned to me (without my questioning) how much calmer she is.

So now, I watch and wait for it to recur...

 

 

hi powpow -- i don't want to be harsh, but i must ask -- do you have plans A, B, and C set as you 'watch and wait'? as i read your initial post, i thought, yes, this without a doubt in my mind sounds like pandas in a preschooler. my ds was 4.5 at onset.

 

his behaviors included: impulsive, obsessed with symmetry, hyperactive, baby talk, inapporpriate potty talk, tantrums, aggression, silly rhyming, repeating words and phrases, decisions were monumental, intense fear causing avoidance, need for certainly. since he was only 4.5, everyone we sought help from said it was a phase, testing, yada, yada, yada. except for ONE behavioral therapist who diagnosed him. if not for her, we would likely still be trying to treat him behaviorally and probably not too successfully. she said 'what you're describing sounds like OCD". even now, with all i've learned and experienced about OCD -- i find it shocking she saw it.

 

he had a known strep infection 2.5 years prior. with onset, no real signs of sickness. i had taken to the doctor around this time b/c one night he woke up with intense ear pain and was fine the next day. the dr found nothing. when tested his titers were high -- 898 -- and a positivie culture. a few months later, a new ped did a sinus CT b/c he suspected infection --but no real signs except for behaviors = all 6 cavities infected. i think your key is no KNOWN strep history -- or other infection -- for her.

 

once on the right abx for him, ds had 100% remission in about 3 days. so long ago and i didn't have this forum -- i thought he was cured and it was an odd, wierd few months for us. after about a month off abx, he relapsed. i was completely caught off guard and devastated as i tried to piece together a plan.

 

i think it's way too much of a coincidence that your dd had intense abx and steroids and you've seen an improvement in her behaviors. i would advise you set up plans for what you would do if the behaviors return. perhaps make appt b/c most have waiting times anyway that you can cancel if you think so in the future.

 

i also know what it's like to watch a 2nd child and wonder what is 'normal' and what is troublesome. he's older, 9. last year, he was showing symptoms but not too bad -- worries about someone breaking in and taking his baseball cards, needing to be inthe same room with me. he had high titers. dh and i went back and forth about taking him to our dr we see for ds7. i remember saying, "are we just waiting for him to fall apart before we take him in?' i guess we were b/c a few weeks later, he was having terrible 'bad thoughts' at bedtime (also tv induced -- mostly about trains crashing and it was around the time of that train movie last year -- but much more extreme than should have been for a kid seeing something upsetting). dr believes him to have had strep, TBI and HHV. he's done extremely well with treatment.

 

good luck.

Link to comment
Share on other sites

my little one would get very hyper...running around in circles, try to climb out the windows etc., but she would be completely normal when she was on abx (often suprax). (this happened often as she always had sinus infections and also a urinary tract condition. she used to have bright green flourescent mucous just drip out of her nose for weeks at a time.) at the time, I never made the association. it was only after the pediatrician decided to test little one for strep after older one had 4 strep infections in five months, then little one tested positive for strep. after ped put them both on zithro simultaneously, they both cleared up, and little one was no longer a snot monster.

 

eventually, older one was dx'd with pandas & sydenham's. little one would always get super hyper when older one was ill. little one rec'd month long course of zithro while older one showing active symptoms, and at visit to neuro he looked at her and said "she looks completely normal! I'm keeping her on the zithro.". also got both their T&As done simultaneously, and little one was pretty much ok after that. (even ped agreed that at the very least her adenoids needed to be removed.)

Link to comment
Share on other sites

Well I could have written your post about two years ago. I have three kids.....Our oldest son was a classic PANDAS presenter with handwashing OCD and anxiety immediately following a strep incident. My second son with milder symptoms following illness, but really not requiring intervention until recently (another post entirely). My daughter was always the "strong willed child". To the point that we started seeing a family counselor when she was 3 to get a plan on how to deal with her "strong will". Looking back now we realize it was all mini episodes of PANS. When they are 2 or three it is easy to pass off as a phase or terrible two's. She had lots of frustration intolerance and a very rigid personality. She didn't transitions well from one event to another, & making a simple decision was torture. Several other things that when we finally spoke to the team at USF, they said was classic OCD in young children. (Who knew)Then there would be months of good times, you know the routine. She was not a classic presenter (at least not to me)like my boys were. No hand washing or germ issues. She did have the seperation anxiety though. I just wasn't putting it together. So it wasn't until she was seven and received the flu mist and then there was a huge exacerbation that we could deny it no longer. Now looking back over the years, I see that all of her behavior really wasn't "strong willed", it was OCD that she was unable to verbalize because it started at such a young age. It didn't appear like the OCD in my other kids. Although I know now, it appears differently in different children. So this last year has been horrible trying to get her stabilized. It has taken 2 IVIG's, antibiotics and CBT and we still have some work to do. I think your daughter sounds very OCD to me. She has thoughts that get "stuck", has sensory issues, issues with symmetry, can't stay in a room without you (seperation anxiety)....there is a family history....was there a question in here somewhere? Your question is in your treatment plan. Sounds to me like you are covering that quite nicely too.

 

I only wanted to post to support you in your decision to move forward with the diagnosis and treatment of your daughter. Sounds like you are doing a great job. It is so hard with multible PANDAS / PITANDS kids. The other thing I wanted to add is that with your daughter having pneumonia you need to have them check for systemic mycoplasma pneumonia. My daughter had asthma and pneumonia several times when she was younger and my pediatrician told me that was no big deal. Then after she had her exacerbation with the flu mist her PANDAS specialist tested her for myco p and she was positive. It wasn't until they started treating her with biaxin that she started to recover. The zith really didn't do much. Sounds like you have your hands full. Hope things settle down for you soon. Best of luck...

 

Dedee

Edited by Dedee
Link to comment
Share on other sites

Yes...what everyone else said...it sounds like PANDAS & getting a plan in place would be wise. Especially if you know how bad it can get.

 

A word about myco p, and to repeat what Dedee said about Biaxin. My 7yo son reacts to this (had 2 episodes due to it this year), and we used Biaxin to combat the PANDAS symptoms. He was already on daily Zithromax when he got sick. We switched to Biaxin for 6 weeks both times he got sick. And his symptoms of myco p started were PANDAS behaviors first. In the initial case this year, he only had a slight cough with the myco p but lost most of the improvements we'd seen from the IVIg (major backslide). The Biaxin was helping within a week! The second one, he had PANDAS symptoms first (sleep issues), but then 3 days later was tired, coughing, fevered, weak...we saw more symptoms as a positive thing. We didn't even run the test the 2nd time & just called it myco p. We did IVIg last November, and he's doing really well...still on daily Zithromax.

 

Good luck!

Link to comment
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...