case histories?

[pr40]

Hi everyone,

I am still new to PANDAS and am trying to figure out the basic stuff. So far the most helpful have been case histories. They, first, helped us identify symptoms, gave us some ideas of what remedies to try and how this thing might progress.

 

PANDAS is highly individual as we know. So, I would like to make a suggestion: can we, please, devote one thread (among the, say, helpful threads) to case histories? I imagine that they would not be day by day histories, but month by month, including symptoms, medications tired, the effects, general progress, and so on.

Such case histories would be very helpful not only to parents but also to doctors and scientists doing researchers on PANDAS and would establish, if nothing else, than a detailed description of this thing in its many variants.

So, can I please urge you do it?

I am not going to start with my daughter's history with PANDAS because it is short (6 months) and we still don't know what we are seeing, doing, etc.

Thanks in advance.

[MomWithOCDSon]

I think this is an excellent idea. Many of us have posted our histories here (sometimes in more detail, sometimes in less), and others of us have provided detailed case histories to various organizations and/or doctors/researchers. But having a thread here solely devoted to brief summaries would be both interesting and helpful, IMHO. I'll give it a go and try to keep it succinct.

 

Pre-PANDAS Dx History: Recurrent ear infections from 18 mos. to 3 years, until ear tubes surgery at 3. Dxed with OCD at 6 (parents raised the issue of PANDAS at 6 and again at 7.5 but were blown off and no symptomatic strep to support concerns). Age 12, condition took dramatic downturn - DS became highly anxious, non-functioning, could not attend school, could not sleep, could not eat, etc.

 

PANDAS Dx: October 2009 - Basically initially self-diagnosed via "Saving Sammy" and ASO blood test which revealed titers 5 to 7 times the high end of the lab's "normal" range (depending upon the lab)(later saw Dr. K. in May 2010 who clinically indicated PANDAS and ordered full immune panel and fresh ASO and anti dnase b which were still elevated). Existing pediatrician agreed to 30-day Augmentin 875 trial.

 

Road Back from Nowhere: Dramatic behavioral improvement within 48 hours - anxiety relented dramatically, began participating in family activities again, sleeping better, etc. By the end of the 30-day trial, improvements had "plateaued," so thought perhaps the abx was no longer needed. Within 10 days of being off abx, however, behavior began to slide downward again, so asked for renewed prescription and stepped it up to Augmentin XR, based upon Sammy Maloney's experience. Added probiotics, fish oil and anti-inflammatory supplements (quercitin, Vit C, curcumin, etc.) and stayed with abx. DS returned to school and some extra-cirricular activities (IEP in place at school, however). Weekly ERP therapy and low-dose SSRI (Zoloft) remained in place.

 

One Year In: Every time we attempted to remove or even cut back on abx, behavioral regression would resurface within 8 to 10 days of the reduction/removal. Continued with abx and supplements with a slow improvement in behavior and mood. Some "saw-toothed" periods, with slight regressions or re-appearances of anxiety-related behaviors we thought we'd left behind, but overall pattern demonstrated level and/or upward trajectory overall. Continued low-dose SSRI, therapy, anti-inflammatories, probiotics; added glutamate modulating therapies such as NAC and Lamictal.

 

Two Year Mark: Began to slowly wean off abx while continuing other supplements and interventions. Ceased abx after 3-month weaning period. Slight downward bump behaviorally, but bounced back and regained ground relatively quickly.

 

Today (33 Months Post Beginning Treatment): Off all abx for 7+ months. Continue low-dose Zoloft, Lamictal and supplements - NAC, quercitin, Vit C, zinc, B6, Vit E, Vit D3, fish oil, milk thistle, coconut oil, Pepcid, olive leaf and melatonin. DS attending high school and in Honors or AP classes, happy, resilient, positive attitude (IEP remains in place). Sleeping well. Therapy every 2 weeks. Still occasional moments of anxiety and "sticky" OCD behaviors, mostly self-doubt around tests and homework. He may now be at his own, personal "100%," though we will continue to hope for and work toward ever-diminishing anxiety triggers.

[jtp]

This is great idea. I often wonder about the history of other members here too. So here's our journey:

 

Son born in May 2000. Breastfed for 10 months, Very fussy baby. Would rarely nap more than 1/2 hour at time. Although he didn't nap well he did sleep through the night very quickly. Met all his milestones on time or early. Very active, curious and adventurious toddler. He rarely got sick and when he did he would have a high fever one day and be up and running the next. Only had antibiotics once at 18 mos for an ear infection.

 

At age 5 he attended school he was never shy at home, but boy did that change when he entered school. He was extremely shy and sensitive, still very sensitve today. During this year he had an operation for a hernia and later that year had a very strange virus (this has always bothered me). I got a call from the nurse at school saying he was having a breathing issue. So I brought him to his Pedi but by the time I got there he was getting random pains throught his body (no fever). He said he could feel it moving from one place to another. His stomach hurt so bad the Dr made us go the ER. They sent us home. That night he was having raised welts over his body. It would raise and go down and then move to other parts, like lips, eyes ears.( I assumed that this was what had happened internally earlier) I gave him Benadryl which helped a bit. Next day brought him back to the Pedi and she said it was a virus. hmmmm weird.

 

At age 8 he had bronchitis and was given 2 weeks amox. 2 weeks later he had an ear infection and was given 2 more weeks of antibiotic. about a month or two later he developed tics, a bit of ocd behaviours, restlessness, insomnia, weird behaviours.Could not wear socks with seams, elastic waist pants only, no tags etc. This went on for a few weeks and then he began a severe eyerolling tic and I brought him to his pedi. I thought he was having seizures.I had not heard of Pandas but my Pedi said he might have strep and if he did it would be Pandas. Strep and Lyme negative so Pedi said it was not Pandas. We went to a Neurologist diagnosed with Transcient tics. Pandas symptoms subsided and cleared totally in about 2 months. We did not give him any medications or supplements at this time. (this is when I found this forum)

 

Age 11. He had colds and fevers between age 8 and 11 and no tics or behaviour changes. He did have a continous sinus issue throughout this year, post nasal drip sore throat. Summer 2011 his sinuses were worse ended up with an ear infection. Dr gave him 5 days of Zithromax. Ear cleared but 2 weeks later got Hand food and mouth disease from a pool. The tics and adhd type behaviour along with mood swings returned. Back to Pedi same scenario as above. Brought him to Children's hosp to see a Neuro there and he said that he could have postinfectious OMS or Sydenhams Chorea. My son has never had a diagnosed strep infection still to this day. The Neurologist said if it happened again to bring him back. He said we were lucky we did not get a PANDAS diagnosis because then we would be using antibiotics long term. During this episode we gave our son probiotics, fish oil, ibuprofen and a multivitamin. This episode was about 2 weeks shorter than his first episode however it seems the adhd type symptoms have stayed with him.

 

Present age 12. We went to see Dr B. tested for several infections. My son and family tested negative for strep, mycoplasma and Lyme, but he still has a sinus problem(maybe strep in sinuses). I tested positive for mycoplasma and am currently taking Abx. My DS had a raised ANA titer and it was suggested he see a Rheumotogist (we have an appt next week) DS is on his 6th week of taking Zithromax and we return to Dr B next week for the rest of his allergy testing. So for now no allergies to foods. He is doing okay, no tics but still a bit on the adhd scale. Doesn't seem as interested in his favorite things. His sinus issues got better, but they are starting to return and I will bring this up at our next appt. He is taking Zithromax, Probiotics, fish oil and multivitamin. At times a nasal spray Qnasl for his sinuses.

 

We will be exploring the possibility of tonsil and adenoids removal or at least consulting with a Pandas friendly ENT. I'm not comfortable with him taking Long term antibiotics so we may pursue alternative methods. Right now we are trying to weigh all the options and get a few more opinions. After that we will make decisions as best we can.

 

Jeannie

Edited June 27, 2012 by jtp

[junkyardjean]

Great idea! We are only 7 months into this journey at this point, but here is a rundown...

 

DD - normal term birth, small stature (and continues to be small). Started daycare around 6 months - had a cold/virus/ear infection every 3-4 months. "Spicy" child from birth - lots of crying, busy, testing boundaries, etc - but not clinical or overwhelming to parent.

 

Just after age 3 - taken to dr. for increased urination. Unable to find an infection, symptoms slowly subsided over next week.

 

Age 3.5 years - DD wakes up with what looks like pinkeye - no fever, pain, eating and drinking normally. Take to dr - notes indicate red, pus-filled throat upon exam. Leaking from eyes is "pressure from sinus infection". No strep test done. Placed on amox for 7 days. On day 7, dd complains of wrist pain. Her wrist swells up within 2 hours, is red and hot to the touch. Within hours, her knees, elbows, ankles swell, red and hot. Also gets rash. Treat with advil & tylenol - affected joints migrate. A week later (rash gone, joints managed with advil), she gets a high fever which lasts approx 7 days, very, very lethargic. Gets diagnosis of Acute Rheumatic Fever (query serum sickness). Prescribed pen v until she is 18 years old as proph. ASO elevated, as well as ESR, CRP.

 

One month later, dd starts experiencing behavior changes - hallucinations, raging, irritability, clumsiness, sensitivity in moods. Tires easily, black bags under eyes, gray skin coloring. Slowly improves over 3 months. Dr's indicate sydenham chorea.

 

End of March 2012 - DD spikes a fever - taken to dr and told "just a virus". Within hours of fever starting, dd undergoes complete behavior change. Sensory issues, OCD, verbal & motor tics (minor), raging, self-harming (head banging). Consults indicate PANDAS.

 

Since March, dd seems to be reacting to most virus & bacteria she encounters. We are working with naturopath full time to boost her immune system and that is really keeping the flare-ups much shorter in length (victory feeling when one of her best friends was diagnosed with strep the day after dd played with her all day - we only had 2 days of issues!! Hurray!!). We changed her diet - she is on fruits, veggies, beans, whole grains as her immune system was kicking up after eating certain things. It is like her immune system has gone completely rogue on everything.... Eating yogurt, cheese, etc (which she ate before with no problems) will literally cause excema to grow on her cheeks right before your eyes.

 

Currently doing testing to rule out other infections (so far, no immune deficiencies or infections present).

 

Very grateful to have found this forum and that there is current research happening on PANDAS. We are still in the process of wrapping our heads around everything...

[pr40]

Our child is an 8 year old girl. Symptoms started in December 2011, after an episode of strep in mid October which was treated (beginning 10/17 2011) with cefzil susp. 250/5cc 1 tsp po bid x 10 days.

 

IVF child, nursed for 30 months. When 3 months old, sensitive to her mother drinking milk. Tummy pains and so on stopped when mother discontinued milk. At 2, right knee swollen for a week or so. X-ray showed nothing. Test for Lyme negative.

 

Before 8th year, antibiotics only once when she was 2 and had pneumonia. Otherwise healthy, usual colds, etc.

 

First symptoms were those of Restless Leg Syndrome, an involuntary movement of legs, especially in the evening, and insomnia as a result. Soon separation anxiety appeared, general moodiness, irritability, regressive behavior (wanting to be wiped after going to the toilet, sticking out her tongue, throwing tantrums, etc.).

As symptoms worsened, they included the hands, which she also felt she had to stretch and move in strange ways.

Within weeks, her gait was also changed, as she walked with her ankles pressed outward, and little hopping movements, in response to the feelings in her feet/legs.

 

She has become easy to distract and very slow in doing basic functions (getting dressed, doing homework). She has a certain way of doing some things (like putting two pairs of socks on), walking with a stick, her hair has to be done a certain way, and so on. She began to insist that Mama wipe her after pooping, convinced that there was always some extra poop to be cleaned, which must be done by Mama. Very upset if told she should and could do it herself.

She picks her nose until it bleeds and touches her mouth often.

She has frequent headaches; nausea and loose stool sometimes. She often feels tired.

Her math is not as good as it used to be.

However, her drawing and writing seem to have remained the same. She is able to go to school though she does not perform at the same level.

She also does not seem to be able to stop herself from saying certain things.

Sometimes she is very sensitive to light and to being touched.

She can be depressed or elated. Most often she is in a bad mood. (Often, after she eats her mood markedly changes, but the change may not last long.)

 

Mid April 2012, she suddenly seemed fine for a day. Then had a bug, nausea and vomiting, no fever, during which she had all of her symptoms again. Then, few days after the bug was gone, she was again fine for three days, then symptoms returned in a mild form.

 

In June, her condition is chaotic. One day she has many OCD symptoms – having to touch every object by which she walks, for instance – the next day she can walk down the street normally. Changes can happen in the matter of hours. We see no rule.

 

Currently, we are in this mild symptoms phase. RLS seems to have disappeared entirely.

 

She was seen at Children's Hospital in Boston, at neurology, on February 9, 2012, and diagnosed with post-strep RLS. She was taking 1mg of Clonazepam (after a gradual increase to that dose), for 6 months. We don’t know if it helped her.

 

She has also been taking iron supplements, which may help with RLS. Her most recent levels indicate improvement: iron saturation was 10, and is now 37. Ferritin was 52, and is now 76. TIBC was 349, and is now 336. And iron was 35, and is now 129.

 

In December ’11 and February ‘12, she was on an antibiotic for ten days. We did not see any changes in her symptoms while she was taking it, though on the first occasion it seemed that the antibiotic stopped her symptoms from getting worse.

[EmilyK]

Love this idea

 

Pre: We adopted DS at 8 months - normal birth reported and normal development reported at that time. DS was developmentally on target with great fine and gross motor skills and sense of direction from age two that had the extended family calling him "map brain". He participated with no issue in 2-day a week day care and 5-day a week preschool. His reading skills and drawing skills were ahead of his peers. DS was a persistent problem solver and an easy kid - rule follower, busy and inquisitive, respectful. DS slept beautifully from arrival except one week when he first learned to stand - easily addressed over 5 nights of teaching him to get back down and self-soothe to sleep again. DS had a healthy appetite and was not a picky eater. DS was a healthy kid. He had a bug when he traveled to us at 8 months with fever and vomiting and had two bouts of pink eye in preschool, but otherwise healthy.

 

Onset: Thursday of first full week of Kindergarten (started with a 3-day week, so the subsequent week): suddenly couldn't sleep alone or fall asleep, urinary complaints and frequent urination, crazy hyper could no longer sit for dinner or stories. Symptoms mounted adding anxiety and sensory complaints (too loud, too bright, too heavy, too sticky). Tests showed nothing on urinary issue. School reported that he became highly distractible and he would obsess over not getting things exactly right. DS began to having screaming, weeping meltdowns on the floor of not wanting to go to school as he was sure he'd "get in trouble". I work for the ed dept and have opportunity to visit dozens of schools and classes across the state each year. He had a great teacher and principal in a supportive, non-punitive environment. Those emails from the teacher really picked up in March after his brother had strep in Feb that year.

 

Continuing: Distractible behavior persisted even in creative arts, math, science camp environment. 1st grade new school with smaller class sizes and responsive classroom philosophy and many peers of same ethnic/racial background. Anxiety mounted and DS started to clean obsessively at home. He quit eating convinced he'd vomit. He began to be unable to do math and writing that he could do previously. Sensory complaints increased as did the meltdowns. Began weekly therapy in December. Reading intervention, modified homework, and OT at school - he held it together mostly ok for the day and fell apart once home. School reports that he needs much redirection to stay focused on work in a class of 16 with teacher and TA. DS continues to obsess about not doing things exactly right. We had one month where he covered all windows with blankets and papers to keep the ninjas out. Driving down a road with an "ugly turn" caused a meltdown. Meltdowns now involved hitting and running away. Many times we'd have to put him in car and throw on the child lock to go to school. He'd hide under his jacket in a restaurant, flip out at a hockey game or birthday party, etc. Classic strep presentation Feb. and continued postivie in April, May, finally negative mid-June. Penicillin in April in pill form gave us a glorious 3 weeks of having our kid back. Subsequent penicillin fairly useless. Pediatric neurologist in Boston not so helpful. We are on waitlists and have other appointments in August with a neuropsych and September with Dr. B. I've been working my way through Dr. Gellar's referral list and I'm thinking we're ready to head further abroad to NJ or NY for treatment. Being out of school had reduced the meltdowns from 1-2 a day to every other day. We continue with weekly therapy and various strategies such as What to do when you dread your bed, and What to do when your temper flares workbooks, 5 point scale, omega 3's , D3, multimineral/vitamin, Juice Plus, organic, nonGMO preservative free food, lots of exercise. He finished the year on grade level for reading but well behind in math and writing. The urinary complaints and fears of vomiting are back.

[tpotter]

This is great idea. I often wonder about the history of other members here too. So here's our journey:

 

Son born in May 2000. Breastfed for 10 months, Very fussy baby. Would rarely nap more than 1/2 hour at time. Although he didn't nap well he did sleep through the night very quickly. Met all his milestones on time or early. Very active, curious and adventurious toddler. He rarely got sick and when he did he would have a high fever one day and be up and running the next. Only had antibiotics once at 18 mos for an ear infection.

 

At age 5 he attended school he was never shy at home, but boy did that change when he entered school. He was extremely shy and sensitive, still very sensitve today. During this year he had an operation for a hernia and later that year had a very strange virus (this has always bothered me). I got a call from the nurse at school saying he was having a breathing issue. So I brought him to his Pedi but by the time I got there he was getting random pains throught his body (no fever). He said he could feel it moving from one place to another. His stomach hurt so bad the Dr made us go the ER. They sent us home. That night he was having raised welts over his body. It would raise and go down and then move to other parts, like lips, eyes ears.( I assumed that this was what had happened internally earlier) I gave him Benadryl which helped a bit. Next day brought him back to the Pedi and she said it was a virus. hmmmm weird.

 

At age 8 he had bronchitis and was given 2 weeks amox. 2 weeks later he had an ear infection and was given 2 more weeks of antibiotic. about a month or two later he developed tics, a bit of ocd behaviours, restlessness, insomnia, weird behaviours.Could not wear socks with seams, elastic waist pants only, no tags etc. This went on for a few weeks and then he began a severe eyerolling tic and I brought him to his pedi. I thought he was having seizures.I had not heard of Pandas but my Pedi said he might have strep and if he did it would be Pandas. Strep and Lyme negative so Pedi said it was not Pandas. We went to a Neurologist diagnosed with Transcient tics. Pandas symptoms subsided and cleared totally in about 2 months. We did not give him any medications or supplements at this time. (this is when I found this forum)

 

Age 11. He had colds and fevers between age 8 and 11 and no tics or behaviour changes. He did have a continous sinus issue throughout this year, post nasal drip sore throat. Summer 2011 his sinuses were worse ended up with an ear infection. Dr gave him 5 days of Zithromax. Ear cleared but 2 weeks later got Hand food and mouth disease from a pool. The tics and adhd type behaviour along with mood swings returned. Back to Pedi same scenario as above. Brought him to Children's hosp to see a Neuro there and he said that he could have postinfectious OMS or Sydenhams Chorea. My son has never had a diagnosed strep infection still to this day. The Neurologist said if it happened again to bring him back. He said we were lucky we did not get a PANDAS diagnosis because then we would be using antibiotics long term. During this episode we gave our son probiotics, fish oil, ibuprofen and a multivitamin. This episode was about 2 weeks shorter than his first episode however it seems the adhd type symptoms have stayed with him.

 

Present age 12. We went to see Dr B. tested for several infections. My son and family tested negative for strep, mycoplasma and Lyme, but he still has a sinus problem(maybe strep in sinuses). I tested positive for mycoplasma and am currently taking Abx. My DS had a raised ANA titer and it was suggested he see a Rheumotogist (we have an appt next week) DS is on his 6th week of taking Zithromax and we return to Dr B next week for the rest of his allergy testing. So for now no allergies to foods. He is doing okay, no tics but still a bit on the adhd scale. Doesn't seem as interested in his favorite things. His sinus issues got better, but they are starting to return and I will bring this up at our next appt. He is taking Zithromax, Probiotics, fish oil and multivitamin. At times a nasal spray Qnasl for his sinuses.

 

We will be exploring the possibility of tonsil and adenoids removal or at least consulting with a Pandas friendly ENT. I'm not comfortable with him taking Long term antibiotics so we may pursue alternative methods. Right now we are trying to weigh all the options and get a few more opinions. After that we will make decisions as best we can.

 

Jeannie

 

Jeannie,

 

You may want to try DAN dr or holistic chiropractor (or ART...they're very similar), and see if you can get some more answers.

[pr40]

If I can make another plea for more of case histories, please. They are among the most helpful sources for parents and doctors. The more we have publicly available, the better the case we will make.

[bigmighty]

Pre-diagnosis - Had 18 cases of 'symptom-free' strep between ages two and 10. DS would fall down and sob at length for no reason. I'd go in and request throat culture and it was always positive. Never a sore throat or fever with strep. Anxiety and tricotillomania accompanied each case but all usually resolved in one to two rounds of antibiotics. Just before age 10, ENT suggested six months of antibiotics. DS did not have strep again for nearly three years. During the ages 10-12, DS (always extremely shy and with extreme sensory integration issues) blossomed and became outgoing and much less sensitive. At the time, we did not see the connection at all, as his behavior changes took place after he went off of the antibiotics.

 

Diagnosis - age 12 - extreme full-blown OCD overnight onset. Went to family therapist who, luckily, suspected PANDAS immediately. Titer score during an active case of strep at this time was "too low to measure." But Antinasal DNA antibody test score was quite elevated. Local PANDAS-friendly doc provided long-term antibiotics. DS accepted into NIH clinical trial. Two rounds of HD IVIG. DS was completely 100% in remission for three weeks (age 13) after 2nd round of IVIG. However, he got strep three weeks later, leading to symptoms much more severe than those at initial onset. Symptoms continued for 10 months, during which time DS worked with Dr. B in CT. Eventually, a combo of 19 day steroid taper and augmention 875 2x daily resulted in remission.

 

Present - DS has been in remission of all symptoms for 10 weeks. He has no recollection of having ever been sick. He remains on augmentin 875 2x daily, for the present. His most recent few sets of labs show overall IGG at 600 (normal is 800-1800). Dr. B. recommends multiple IVIGs - every eight weeks ongoing, to address the CVID, but suspects that the PANDAS symptoms will return when IVIGs begin.

 

Still undecided as to how to proceed. More labs and appts with local docs/immunologists next week. DS is presently on the schedule for IVIG in CT in late August.