What can we learn from each other?

[Suzan]

I have two children, I have morphed them together below except where I noted things specific about them. Hopefully I have made sense....

 

My child has:

Lyme - positive Igenex Testing and mother (me) positive for lyme

Chronic infection

Chronic Strep - History of chronic strep I don't believe they have strep anymore

Significant Immune Deficiency

No known current infections

 

 

What group is you child in?

Group 1 - my child dd8 only reacts to strep. other illnesses do not cause exacerbation HOWEVER, she also falls into group 4 because she would have other unknown triggers and patterns

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child dd9 reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child dd8 exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

dd8 - 118% (taking high doses of taurine which I think skewed the results)

dd9 - 143%

Both girls were elevated in all anti-neuronals

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5 obsessions, separation anxiety, phobias, urinary urgency (dd8 has seizures, extra heartbeat and born with hemangioma birthmark

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+ obsessions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia (dd8 only), reassurance questions, regressive behavior, rages/tantrums, nightmares, hallucinations, bedwetting, urinary urgency, separation anxiety, extreme irritability, emotional liability - dd9 - PAIN, episodes where she could not walk, nightly roving joint pain, muscle twitches (not tics)

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

3 "low" dose IVIG's for dd9prior to current treatment. Increased pain and inability to walk after IVIG's. Improved mood for 3 weeks and then it would wear off.

Current meds for Lyme using the 3 stage approach:

 

500 mg zithromax M-W-F

1500 mg Amoxicillin daily

500 mg Flagyl 2 days each month

Nystatin, Diflucan, probiotics, multivitamin, caprylic acid, melatonin, benadryl, zyrtec, ibuprofen

 

Protocol is working great for dd9. After 3 months on lyme treatment, most of her symptoms are gone and/or at least 70% better. Hardly any pain and usually sane. She still is triggered by illness and allergies

dd8 has been on treatment for 1 month and is not showing improvement yet

Edited March 4, 2011 by Suzan

[norcalmom]

smarty - I should probably fill this out for my son. Its so interesting to see everyones replies. I like seeing all the stories and data together in one place and seeing how everyone is currently treating and what is working. This is better than a survey - because in the survey you only see the results numerically, you can't read the stories. They are too limited. I admit, I wasn't going to spend the time doing the survey monkey if people weren't interested in this subject.so I took the lazy way out with this post. But now, reading through all this, I like the antecdotal format. Perhaps someone reading it will see some connections that I would miss or that survey monkey doesn't capture by crunching the numbers.

 

My son gets more than 10 symptoms in exacerbation...almost the whole list..He's still functional though. Yes, hard to say how people group things. OCD has many facets, and some people may not be able to see the forest for the trees. It wasn't until I started to read about reassurance questions that I realized that my son had this - its not a "10" like his tics - couldn't miss those in exacerbation. And bedwetting, well, little boys wet the bed sometimes...we saw ALOT of things as normal, that we now know are not. Stuff we didn't even know was a symptom - disappeared after ivig. so, mild and subclinical, and during exacerbation the least of our worries - we were focused on the "top three" for him - which were/are - intursive thought OCD triggered my me swallowing, compulsion to look into the sun, and math/hadwriting and perhaps a bit of ADHD (basically school issues that were effecting self esteem).

[JTs-Mom]

My child has:

Lyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

Per our infectious disease doctor, my ds does not have elevated anti-neuronals. I have not yet seen the #s. He just got the results a few days ago.

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5 tics, urinary incontinence, emotional lability

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5 tics, urinary incontinence, emotional lability

6-10

10+

[EmersonAilidh]

I have:

Lyme

Chronic infection <<Would Lyme coinfections count?

Chronic Strep

Significant Immune Deficiency

No known current infections

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the trigger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

Haven't had one.

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

How many symptoms do you have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5

6-10; Compulsions, dilated pupils, rages/tantrums, nightmares, depression, extreme irritability, emotional liability.

10+

 

How many symptoms do you have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+; tics, obsessions, compulsions, dilated pupils, anorexia, body dysmorphia, reassurance questions, rages/tantrums, nightmares, depression, extreme irritability, emotional liability. +Anxiety & speech problems.

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dilated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

Never had P.A.N.D.A.S. treatment.

Edited March 7, 2011 by EmersonAilidh

[norcalmom]

No enough responses to see much yet, but it does seem that those with Lyme likelihood of chronic strep...(or vice versa).

 

Is there anyone out there that has lyme, and doesn't have chronic strep (or history of recurrent strep infections)? But still has all symptoms of pandas?

 

We only had one respondent that said their child only reacts to strep.

3 folks are PITAND

5 are Lyme and Chronic Strep (and other coinfections in 2 of those 5)

 

 

I almost feel I can't classify peglem - because her daughter has been so sick for so long. she thinks chronic strep, not tested for lyme or other, some of highest cam K and antineuronals. Very little delta in baseline to exacerbation, and non-identified triggers or non-viral triggers included.

also - Michael, is an "outlier" - no offense!! Totally appreciate the input feedback and information. Just don't have a group to put you in for this. All the info is greatly appreciated though.

 

Also seems that the people that say they have a chronic infection - have non-typical presentation. Either they get elevated and stay that way, or they aren't sure what is setting off excerbations, too few replies to say at this point, but possibility.

 

Unfortunately, I have to assume that only those with Lyme, actually checked for lyme. So, bummer there.

 

Anyone else want to share?

[airial95]

Haven't had a chance to scroll through and read others responses (but I will tonight...) but here's our stats:

 

My child has:

Lyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections

All bloodwork has come back normal, both ASO and immune workups, but he has had 3+ confirmed strep infections in the last 9 months.

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline we see this with bacterial infections too - but his main trigger is strep

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?Not old enough for the cunningham test yet (he'll be 4 in October)

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5 we have had 2-3 rituals stick around between exacerbations as well as ADD symptoms

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+

tics, obsessions, compulsions, add/adhd, urinary frequency, phobias, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, bedwetting, separation anxiety, extreme irritability, emotional liability

 

What is your current treatment, and how is it working? We were on abx for 11 months - got to about 75% on zithromax (full dose for 3 months, proph dose for 5 months, switched to cefdinir for 3 months and got to about 80-85%. Stopped all abx in december - backslid to about 75-80% (doing ERP so some of the backlide may have been attributed to forcing him out of his rituals) Got a positive swab two weeks ago, and are back on 250 mg/day of cefdinir (he's 33 lbs) Swab came after increased bedwetting/potty accidents, two new tics (very mild - unnoticeable to anyone but mom and dad at first) and hopping/clapping through the kitchen tile (which was totally new for him)

[kferricks]

My child has:

Lyme

Chronic infection

Chronic Strep

SIGNIFICANT IMMUNE DEFCITIENCY

No known current infections

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

 

If you had

a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?NO TEST

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5

6-10 obsessions, compulsions dialated pupils, urinary frequency reassurance questions nightmares separation anxiety emotional liability

10ALSO SENSORY ISSUES

 

ACTUALLY AT BASELINE SHE IS COMPLETELY WELL ADJUSTED KID WITH NO OTHER PROBLEMS..

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+

obsessions, compulsions, add/adhd, dialated pupils, urinary frequency reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other. sensory

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

 

Omnicef and pred worked for awhile and then she was just put on Azith and pred but not much help there, we went backwards instead but she could've been exposed to something in the process... so Yes and I don't know.

[norcalmom]

shadow - what kind of immune deficiency ?

[kferricks]

she does'nt make antibodies for strep or pnemonia. We "think" she had a strep infection when this all started, so I was not sure how to answer that question.

[norcalmom]

how long has she been in this state of exacerbation? I'm so sorry you've had almost no relief. Very scary. Are you thinking about ivig? I think with immune deficiencies that are significant, most insurance would cover it.

[eljomom]

I haven't replied since I don't know that i have many "definites" to many of the questions, but will do the best I can:

 

I've been going round and round on the whole chronic infection, possible Lyme, pandas, wheel for weeks now.

 

Is there some symptom, test result, or presentation that might help us distinguish (even a percentage) of these groups from one another? To help decide the right treatment (or combination of treatments)?

 

Below is a list of qestions. I'm going to assume anyone answering this has PANS - Pediatric Autoimmune Neuro-Phychological Syndrome (call it pandas if you want)..and may or may not know what triggered it. Perhaps those of you that do know for sure, can help those of us trying to figure it out. If we get enough response and it looks like there might be some correlation in this stuff, I will do a survey monkey and include more questions. input on questions welcome.

 

Probably easiest to copy and paste the questions below and put your answers in BOLD CAPS so its easier to read.

 

My child has:

Lyme hmmm....Igenex negative, but a few IND's...still not sold that means she has chronic LYme...

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections Still not sold that there are NO underlying infections, but nothing so far has shown up

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) there seem to be days here an there, maybe 3-5 in a row, where tics/ocd is less (NOT gone), and then back to same 'ol same 'ol...still trying to figure out why this is happening...happens more now that she's on low dose zith...before it was just steady

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe) well, I guess we would be more here....sort of Group 2, 3 and 4...but not "clear exacerbations with a return to baseline"

 

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

Cam K 168

Anti D1 4000 (4 times mean)

Anti Lyso 320 (double mean)

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5 tics, compulsions, obsessions (?), adhd

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10 tics, compulsions, obsessions (?), adhd, reassurance questions, separation anxiety, decline in drawing, emotional lability

10+

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

Did Augmentin after about 2 years of mild ocd, and over 4 months of tics....the sudden tics and sep. anx, decreased drawing, etc..onset was after high fever and impetigo (staph)....anyhow, Augmentin for 1 month...maybe a bit of improvement after 3 weeks, that disappeared when brother got stomach bug. Now on Azithromycin (100 mg/day @ 45 pounds)for almost 3 months...having some brief (3-5 days) periods of less tics, sep. anxiety, etc...have not tried steroid yet (want to rule out underlying infections first, but can't get anyone to test for it), and not sure about iVig/pex...she is not debilitated, but she's also not "normal"---so how do you decide when to try it......?????

 

Thanks for your input and time.

[nicklemama]

Below is a list of qestions. I'm going to assume anyone answering this has PANS - Pediatric Autoimmune Neuro-Phychological Syndrome (call it pandas if you want)..and may or may not know what triggered it. Perhaps those of you that do know for sure, can help those of us trying to figure it out. If we get enough response and it looks like there might be some correlation in this stuff, I will do a survey monkey and include more questions. input on questions welcome.

 

Probably easiest to copy and paste the questions below and put your answers in BOLD CAPS so its easier to read.

 

My child has:

Lyme

Chronic infection

Chronic Strep

Significant Immune Deficiency

No known current infections. Never tested for strep until post diagnosis. Strep and mycoplasma titers normal.

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

He appears to be reacting to strep exposure. Two playdates w/ kids recovering from strep (found that out post play) and he exacerbated for a couple of days.

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe)

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

Cam K 144

Anti D1 2000 (2x mean)

Anti Tubulin 2000 (4x mean)

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came latertics didn't come until a yr after 1st untreated exacerbation

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

 

N/A - they don't exacerbate - its always pretty bad

one

2-5separation anxiety, anxieties, fears, sleep disturbance

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

 

one

2-5

6-10

10+obsessions, compulsions, tics, rages, adhd, dialated pupils, phobias, fears, reassurance questions, regressive behaviors, nightmares, separation anxiety, depression, irribility, emotional lability, loss of social skills

 

List of symptoms to pick from not limited to : tics, obsessions, compulsions, add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting, depression, extreme irritability, emotional liability, or other.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

Started biaxin, 250mg bid, for 60 days. Returned nearly to original baseline. Put on azithromycin 250mg for 30 days, prophylactic dosing only twice a week. Went downhill. Placed on Augmentin 500mg bid for 45 days, too many strep exposures at school, started exacerbation after making gains when first on Augmentin. Switched to azithromycin 250mg sid three days ago. We'll see. No other treatments thus far.

 

Thanks for your input and time.

[kferricks]

how long has she been in this state of exacerbation? I'm so sorry you've had almost no relief. Very scary. Are you thinking about ivig? I think with immune deficiencies that are significant, most insurance would cover it.

Since the first day of school, but in hindsight, she was showing worrys a couple weeks prior, but it all seemed like normal stuff. She did improve in Dec. meaning she could walk from room to room by herself and a couple improvements up to 50%. Dr. still thinks she won't need IVIG. But we will see after next Monday what he has to say. Thanks for asking.

[amyjoy]

My child has CHRONIC STREP

 

Group 4 - my child exacerbates, but we cannot tell what the trigger or pattern is with the exacerbation.

 

CAM kinase = 139

anti-lyso top of range at 320

 

tics first, and ocd came later

 

current baseline - two symptoms (dilated pupils, a few ankle tics here and there)

 

exacerbations - maybe 5-7 things - mainly tics, plus anxiety, regressive behavior, hand writing goes down, insomnia, emotional, coordination goes down, hyperventilates or feels like he "can't take a deep breath"

 

 

Am feeling pretty good about his current treatment protocol for the most part.

The three biggest things that helped (we tried everything for the past 5 years) =

 

the cranial work - started three years ago took him from non-functional, severe tics including vocal tics with barking, not being able to be at school without me going there to help him at some point nearly every day, not ever sleeping and shaking all the time to no more vocal tics ever, sleeping, overall tic reduction and some overall improvement within weeks

 

going off of gluten (found out he has celiac) major reduction in tics, bloating, joint probs, behavior

 

the ivig in November- magical reduction in tics, ocd, anxiety, mood problems

 

Currently he takes these things every day:

probiotics - s boulardii, culturelle and sometimes the Proboulari by metagenics that has lacto and bifido and boulardii

 

avipaxin - anti pro-inflammatory cytokine via acetylcholine pathway support

 

oils

 

mag / minerals at night

 

GI reset by Xymogen that has Glutamine and Imunoglobulins to help restore GI immunity

 

liver + methylation support

[Orion]

Norcalmom-

not sure if this info will help you or just confuse things even more. My child fits into the adolescent onset of PITAND (PANS) presumably set off by Lyme (need to ask her doctors if myco pn. is a player.)

 

It’s been interesting reading this board for the past several months. The hardest part to wrap my mind around is the boards use of the term “exacerbation”. Lyme flares up, not necessarily exacerbates. (Although that has raised some more questions to ask DD’s docs.) Sometimes it is like I am looking at the same coin as the majority here, but viewing it from the other side.

 

My child has:

Lyme (which caused hypothalamic hypopituatarism among other ailments)

Chronic infection: Babesia, Bartonella, (hopefully both gone for over a year, now) mycoplasma pneumonia, chlamydia pneumonia

Chronic Strep

Significant Immune Deficiency IgG subclass

No known current infections

 

What group is you child in?

Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation

Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy)

Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline

Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation.

Group 5 - other presentation (describe) Not applicable, maybe? Both major Lyme relapses, and 1 minor one occurred during the Fall - but exposure to other illnesses not assumed to be the cause.

If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated?

Cam K2 -132

Anti-Lysoganglioside 1280

Anti-Tubulin 4000

Anti Dopamine 1 4000

Anti Dopamine 2 8000 (not sure if this is considered elevated or not)

 

What symptom group would you put your child in:

tics only

ocd only

tics first, and ocd came later

ocd first, tics came later

completely balanced - but tics and ocd have only been a minor part of the issues involved

 

How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below)

Baseline was 9 years ago, before the tick bite- she didn’t have any problems back then. But since the first relapse in 2005:

N/A - they don't exacerbate - its been pretty bad

one

2-5

6-10

10+

 

How many symptoms does your child have in exacerbation? (list them next to the group below)

during a flare-up:

one

2-5

6-10 can be different symptoms, depending on the day, or time of day. With Lyme, symptoms come, symptoms go. The worst ones are just more prevalent.

10+

 

List of symptoms to pick from not limited to: tics, (almost completely gone), obsessions, compulsions (not major- only 1 that I know of- if she cleans one fingernail, she has to touch all the other fingers), add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting (hates to use a pen or pencil), depression, extreme irritability, emotional lability, or Other: (in no particular order): Fatigue, General Anxiety, Paranoia, Movement disorder, Sound sensitivity, Dysautonomia (low blood pressure, heart palpatations and occasional tachycardia, dizziness), air hunger; auditory processing difficulties, brain fog, “don’t feel right in the head”; Raynaud’s; vision problems

 

[Whoever coined the term, GRRRR as a symptom got it 100% correct!]

 

Joint pain, shooting nerve pain, rage, headache rarely show up anymore.

 

 

DD’s major symptom and what prompted the Cunningham testing is the movement disorder: non-Sydenham chorea, paroxysmal dyskinesia and an occasional tic.

 

What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were.

Currently on IV antibiotics, IVIg, oral doxycycline, Tindamax, replacement hormones for what her pituitary isn’t producing; supplements for deficiencies, and of course lots of probiotics. The movement disorder is much improved.

 

Finished Babesia and Bartonella treatment about a year ago- have my doubts that Babesia isn’t still around though.

 

Backstory: Basically, DD was bit by a tick 9 years ago. Her pediatrician passed the expanding solid pink rash off as a spider bite. She had no other signs or symptoms until 4 months later when the disease was in her nervous system. The relatively short course of amoxycillin she was put on was neither strong enough nor given for a long enough period of time.

 

We were told that the remaining symptoms would resolve over time. Which, for the most part, they did. The first major relapse was in 2005- it took months for the docs to grudgingly admit that the Lyme was back. Long term oral abx got her 75% better, until she relapsed in late 2007. She is still battling back. As her doctors said, she got “whalloped” by a very dirty tick.

 

 

 

She is better off than she was 2 years ago- but still has a ways to go.

Edited March 11, 2011 by Orion