NEG TESTS...HELP IS THIS PANDAS OR BIPOLAR?

[Ann280]

I have a ten year old Daughter that has had onset acute major symptoms since May of 2010. She has always been in the catagory of a "difficult child" more to me a special kid. Very loving, beautiful, athletic, kind to everyone, always thinking of others. She was a colicy baby, but had normal milestones, she potty trained early, but she had delayed speech which she was classified speech delay. She had therapy for that.

At 2 yrs old she changed. She had major separation anxiety, temper flare ups, Sleep and night terrors, she would fall asleep in the next room next to us so we didn't know on chairs on stairs the floor. We thought it was just the "terrible 2's" and let it be. She continued to have learning delays and Sensory processing disorder, which we had therapy for years. She sucked her thumb so that really helped her cope with everything.. She was friendly had lots of friends, sweet, never mean to anyone. She just got upset easy and wanted to be with me all the time but never nasty. Between 3-7 she had some ocd stuff going on like she was very clean, she didn’t want to sip out of spoons forks or bottles of anyone, she got grossed out being dirty. She liked her clothes a certain way. She got grossed out from milk because someone told her she had milk breath that she gave up milk products for over a year. She could never play games with her brother and sister she would give up or start crying.. Forward to 9 years old , she was continuing on having difficulty at school so we decided to enroll her in a school for children with language based learning differences. We thought this was the answer for everything...although the school has only 60 total kids it has helped with acedemics ,but hurt any social normal life for her …having 6 girls in her entire grade and living 30 minutes away makes it hard. Ava has a brother 18 months younger and a Sister 2 yrs older. Ava is very aware of her learning differences and has many issues with the fact she knows her brother and Sister do not.

.. In May of 2010 Ava started to have these tics that started in her eye then her neck then her shoulder they changed every couple weeks. The doctor said it was normal and would most likely go away. Mid October she came home from school like she was high on speed...talking fast..Obsessing about stuff on the computer watching it over and over; regressing like a 5 yr old with touching things in stores, starting trouble with her brother and sister. She wouldn't go to bed. She had all these ideas popping in her head doing art projects out of the blue just totally off things... we thought she was acting like that because of attention during a family party that was going to take place for her sister. This all happened again a month later...worse speed like behavior..ocd...Crying/depression..sleep trouble.a two step tic with sound. The school called me and told me to call the doctor she was totally not herself....called the doctor and They thought it was one of two things...Pandas or BiPolar. When I got home and read about pandas it was like a light when off and everything matched her exactly. The testing was neg on the strip and the other test to the labs took 4 days...i told the doctor from what I read put her on antibiotics I have nothing to lose. 3 days later Ava was perfect..I kept her on the antibiotics for 3 weeks with no issues whatsoever ( * her lab results were normal no strep in system)...3-4 weeks after the antibiotics it all started over again with another episode that's when I went to Scott Smith the pandas specialist..he read her blood and determined that she did fall into the pandas catagory with all her onset acute symptoms...her test results showed normal ,but he said many kids have a negative result. He started her on probiotics...fish oil...taurine...melatonin for sleep..magnesium..and nystatin and vit D( which she refuses to take).and a motrin protocol. I thought all the vitamins were really helping ,definately with the tics...but she has had two other episodes since the start of meds. I used a motrin protocal again and I did notice a difference within 2 full days...now with this recent episode which now I find out she is having urination issues during the day at school (she never mentioned this to me it’s been happing for a while now)..I just started the motrin protocal..I spoke with Scott Smith this am and he adjusted her meds with a low dose of steroids (spinal lactrom and another probiotic (cuterial sp). Sorry for the long letter, but My question is how many kids truly have this PANDAS without positive tests? Could this be bipolar? I’m really confused…and I was too late for the cam kinese test…I should have had it done months ago..i just was putting the whole blood test experience off…my mistake.

[Wilma Jenks]

We see Scott Smith and your child sounds like mine and far as the speeding up and racing goes. We ALSO saw major symptoms start at around 2. Did you say u did the Cam Kinase test? What was her number?

[Ann280]

We see Scott Smith and your child sounds like mine and far as the speeding up and racing goes. We ALSO saw major symptoms start at around 2. Did you say u did the Cam Kinase test? What was her number?

[Ann280]

I did't do the Cam Kinese test yet. I waited to long and now it's closed out for a couple weeks. I will have it done ASAP..My name is on the list. Do you ever think of BiPolar? What does the number tell you in regards to the Cam kinese test

[Ann280]

I did't do the Cam Kinese test yet. I waited to long and now it's closed out for a couple weeks. I will have it done ASAP..My name is on the list. Do you ever think of BiPolar? What does the number tell you in regards to the Cam kinese test

 

 

I can't believe I left out.... anxiety was on normal days she is just a worrier, but on the bad episodes she was in a more carefree mode...

[butterflymom]

=

Edited October 9, 2015 by tampicc

[peglem]

I kept her on the antibiotics for 3 weeks with no issues whatsoever ( * her lab results were normal no strep in system)...3-4 weeks after the antibiotics it all started over again with another episode

 

Bipolar does not remit w/ antibiotics unless the symptoms (bipolar is just a description of symptoms, not an actual disease) are caused by bacteria.

 

Scott Smith is right, Many, many PANDAS kids do not have elevated titers for strep.

 

I'm curious, if she remitted on abx before, why hasn't abx been prescribed, at least to help with symptom flares?

[Ann280]

My child has PANDAS, and has never had positive strep swab, never had strep titers, tested negative for mycoplasma and lyme. Our PANDAS doc says that 50% of PANDAS kids don't show titer response in the bloodwork. i wonder why your doctor didn't put her on an antibiotic? That helped her before right? That's a big indication it is PANDAS, I think.

 

Steroids and antibiotics helped my child a lot, but not completely. We recently had IVIG. This forum will help you a lot. Good luck!

Acutally left out that when I went to see scott smith during the "2rd episode" I had some amoxi and started her on that on my own before I found Scott because my doctor was so against the pandas with the negative testing..she said it's bipolar..I doubted she would give me another dose. I'ts just there is too many coindences with the antibiotics the first time the motrin working..onset acute symptoms... I think my friends think I'm too focused on Pandas ,but I have a gut feeling on this. Scott wants to do the motrin protocal first to see if that helps...I really don't know why he didn't want to put her on another antibiotic ? Possibly to see what is working and what is not? This is so so difficult for our family and I am so sad for my daughter...she is not happy inside and is aware at times of her behavior and apologizes later, but can't help it. She takes all these vitamins every day and rarely complains becuase she wants to feel better. She is a strong amazing special little girl. When she has these episodes I get sad like my sweet Ava isn't there. WAS THE IVIG HELPING?

[EAMom]

A child psychiatrist once told me bi-polar in kids is a "throwaway diagnosis" .

 

 

 

Your child has PANDAS...if she was bipolar she wouldn't have responded to antibiotics or ibuprofen!

 

Have you tested family members for strep (throat culture)?

 

Here is a list of bi-polar symptoms in children....funny, it looks just like a list of PANDAS symptoms! I do wonder how many kids that are diagnosed as bipolar are actually undiagnosed PANDAS? http://bipolar.about.com/cs/kids_diag/a/red_flags4.htm

 

Very Common Symptoms of Early-Onset Bipolar Disorder

 

* Separation anxiety

* Rages & explosive temper tantrums (lasting up to several hours)

* Marked irritability

* Oppositional behavior

* Frequent mood swings

* Distractibility

* Hyperactivity

* Impulsivity

* Restlessness/ fidgetiness

* Silliness, goofiness, giddiness

* Racing thoughts

* Aggressive behavior

* Grandiosity

* Carbohydrate cravings

* Risk-taking behaviors

* Depressed mood

* Lethargy

* Low self-esteem

* Difficulty getting up in the morning

* Social anxiety

* Oversensitivity to emotional or environmental triggers

 

Common Symptoms of Early-Onset Bipolar Disorder

 

* Bed-wetting (especially in boys)

* Night terrors

* Rapid or pressured speech

* Obsessional behavior

* Excessive daydreaming

* Compulsive behavior

* Motor & vocal tics

* Learning disabilities

* Poor short-term memory

* Lack of organization

* Fascination with gore or morbid topics

* Hypersexuality

* Manipulative behavior

* Bossiness

* Lying

* Suicidal thoughts

* Destruction of property

* Paranoia

* Hallucinations & delusions

 

Less Common Symptoms of Early-Onset Bipolar Disorder

 

* Migraine headaches

* Binging

* Self-mutilating behaviors

* Cruelty to animals

 

Edited April 2, 2011 by EAMom

[peglem]

Oh, one more thing- I would not do steroids until after abx...if there is an infection the steroids decrease immune response which can increase virulence. Steroids are helpful in stopping the (auto)immune response once an infection is cleared.

[EAMom]

Oh, one more thing- I would not do steroids until after abx...if there is an infection the steroids decrease immune response which can increase virulence. Steroids are helpful in stopping the (auto)immune response once an infection is cleared.

 

I agree. Hit hard with antibiotics first for at least 2 mo. If one antibiotic doesn't work, try something stronger. Ibuprofen is also a good idea.

[Ann280]

okay thank you so much......So I guess I just tell Scott that I want antibiotics??

I don't know why he didn't give them to me yesterday..I should of asked I just get so confused with all the testings results and terms.

 

I Keep on second guessing myself into thinking is it the antibiotics/ motrin/ vitamins are helping or is it BP and it's just gets better after those couple days later. I know the symptoms of Bi-Polar are so so similar ...that's whats scares me. She did see a psychologist 3 times and he said it's Bi Polar and she was born wired differently, but when I brought the tics that started in the summer and the "all of a sudden onset behavior he sort of fluffed it off and when I told him I saw a pandas specialist and she was on some vitamins. He became irritated. After looking back at all her records she only had strep 2-3 times and over 10 ear infections. Today she has not been able to settle down she is writing stories, dancing to music over and over.singing...watching weird infomercials..Wants to cook..all these ideas keep popping into her head. (some of it is a 10 yr old but I'm starting to get confused on which is normal and what is not) She was Depressed two days ago but yesterday and today totally wired and annoying at home and to her teachers. In school normally she is the child that follows every rule and does her very best all the time, is sensetive to everyone's feelings.... her teachers say lately she doesn't care which is totally out of the norm.

 

BTW I called and emailed Scott that I wanted antibiotics we will see.

How long a Motrin protocol do you usually notice a difference with your child?

[Ann280]

A child psychiatrist once told me bi-polar in kids is a "throwaway diagnosis" .

 

 

 

Your child has PANDAS...if she was bipolar she wouldn't have responded to antibiotics or ibuprofen!

 

Have you tested family members for strep (throat culture)?

 

Here is a list of bi-polar symptoms in children....funny, it looks just like a list of PANDAS symptoms! I do wonder how many kids that are diagnosed as bipolar are actually undiagnosed PANDAS? http://bipolar.about.com/cs/kids_diag/a/red_flags4.htm

 

Very Common Symptoms of Early-Onset Bipolar Disorder

 

* Separation anxiety

* Rages & explosive temper tantrums (lasting up to several hours)

* Marked irritability

* Oppositional behavior

* Frequent mood swings

* Distractibility

* Hyperactivity

* Impulsivity

* Restlessness/ fidgetiness

* Silliness, goofiness, giddiness

* Racing thoughts

* Aggressive behavior

* Grandiosity

* Carbohydrate cravings

* Risk-taking behaviors

* Depressed mood

* Lethargy

* Low self-esteem

* Difficulty getting up in the morning

* Social anxiety

* Oversensitivity to emotional or environmental triggers

 

Common Symptoms of Early-Onset Bipolar Disorder

 

* Bed-wetting (especially in boys)

* Night terrors

* Rapid or pressured speech

* Obsessional behavior

* Excessive daydreaming

* Compulsive behavior

* Motor & vocal tics

* Learning disabilities

* Poor short-term memory

* Lack of organization

* Fascination with gore or morbid topics

* Hypersexuality

* Manipulative behavior

* Bossiness

* Lying

* Suicidal thoughts

* Destruction of property

* Paranoia

* Hallucinations & delusions

 

Less Common Symptoms of Early-Onset Bipolar Disorder

 

* Migraine headaches

* Binging

* Self-mutilating behaviors

* Cruelty to animals

 

BTW none of the family has been tested for any strep...That would involve blood tests right?

[EAMom]

I would start with throat cultures. Do a 72 hour culture if the rapid is neg.

 

The problem with blood tests (ASO/anti-dnase b strep titers) is that lots of kids with strep (including those with PANDAS) don't get elevated titers (or they get an elevation, but only if you test at the right time). Also, if the titers are elevated, that doesn't really tell you if they have a current infection, of if the elevation is from a past infection.

 

Strep titers can be helpful if all your cultures are neg. and you are looking for some evidence of a strep infection. Also, if your child does get elevated titers, it is helpful to track (get another sample in a mo. or two) to see if the titers are rising or falling. So, they do have some use. But, you really need to take them with a grain of salt and they don't help everyone.

 

My dd never had elevated strep titers, despite positive cultures (throat and perianal) and PANDAS severe enough to require hospitalization (we later figured out the strep probably started 2mo. previously.). Also, her sister tested positive on the rapid (I had everyone in the family checked) at the same time. Neither child had pharyngitis although my PANDAS dd did have a 3 day fever when the behavior change started.

[momcap]

My DS7 is diagnosed with mood disorder-NOS, Generalized Anxiety Disorder and Sensory Processing Disorder. He goes to a mood disorder clinic for children with bipolar disorder. When I read your description I could have wrote it about my DS: difficult child, colicy baby, major separation anxiety @ 2, temper flares, sleep disturbance, night terrors, OCD, germaphobia, mania, depression, etc. Their histories are remarkably similar, except that DS does not have any motor tics, only verbal tics.

 

When we first tested him for strep it was completely negative - throat culture negative and ASO 27 (negative), and our doctor dismissed PANDAS without even mentioning it to me. Meanwhile DS was in the worst exacerbation he's ever had, and we almost had to hospitilize him. A week later both of his brothers had scarlet fever. An unbelievably brutal month later and he had strep throat. Fast forward 6 months to another bad exacerbation. This time I knew about PANDAS and I asked to repeat the blood work - this time ASO in the 500s, and 3 months later it was even higher (he was not ill during these months). Last month he had "scarletina" rashes coming and going in different places on his body a week before both brothers got strep throat again. So we have major strep issues in our house, despite those initial tests being negative. One negative strep test doesn't necessarily mean anything.

 

Based on your DDs response to abx I think it is reasonable to say something infectious is going on. The best 2 pieces of advice I got on this forum were to find a PANDAS doctor and to rule out other infections - especially myco p. & lyme. The PANDAS doc knew what bloodwork to order and prescribed more aggressive treatment than our pedi was willing to try. After a month each on high dose augmentin and then biaxin my poor DS had so many more physical symptoms - rashes, pains, swollen joints, rages, numb feet, feeling like he was dreaming, etc. His blood work came back negative for lyme, but with these additional symptoms and the fact that he was difficult and colicy from birth, I was told to test my blood. Sure enough my blood is positive for lyme, which I may have passed to him in utero. So we're seeing a lyme specialist this week. I'm not saying your DD has lyme...many different "bugs" can cause neuropsych symptoms (PITAND). I learned the hard way that ASOs can be negative even with a strep infection (maybe it was done too soon, or maybe ASO just didn't rise), and lyme tests are terrible for false negatives and can also give false positives. These tests can be good tools for diagnosing, but they are not infallible. That's why so many of these illnesses (like PANDAS and lyme) remain a clinical diagnosis. Which is another good reason to find a PANDAS doctor and get an expert opinion. BTW- I'm pretty sure my DS only goes manic when he's exposed to strep. I started journalling and charting and was amazed at the "coincidences".

 

I was also diagnosed bipolar after sudden onset of symptoms around age 14. But by my early twenties it just went away. I've never heard of bipolar disorder just going away. But I have heard of many children who outgrow PANDAS.

 

Good luck and keep us posted!