looking for advice for my sister

[colleendonny]

My sister has a son who will be 12 this month. Years ago he was diagnosed with bipolar. His main symptoms are rages, ADHD, aggression and OCD ( he gets stuck on ideas). When he first presented he said he was hearing voices telling him to kill people. I think he was about 7 at the time. Now that I know about PANDAS, maybe this was intrusive thoughts, and not voices telling him to do so.

 

He is being admitted to a psychiatric hospital tonight for about a week. They live in Nortonville, KS, if anyone knows of any resources her way.

 

I told her fask for the following tests: rapid and culture test, ASO, DnaseB, Lyme, Bartonella, Ehrlichiosis, and Mycoplasma. I'm not even sure of they will entertain her idea. Is there any other tests I should have her ask for?

[ptcgirl]

Babesia is another co-infection that can cause issues too. Good luck on them testing. Most places will look at u like you've lost your mind. Has he had any abx lately? Any noticeable differences?

[mimip]

I'm so new to PANDAS (though I do know about Lyme and other TBI) so I don't think I can offer much in the way of advice. I find this very interesting though because when my 9 year old DD suddenly started having PANDAS symptoms, we were in the process of exploring pediatric bipolar for my 13 year old DS. I had been reading Bipolar Kids by Rosalie Greenberg and read about PANDAS. I think that may have been what made me first research it related to my daughter. After finding out more about PANDAS, I'm now wondering if that is my son's situation as well.

 

I really feel for your sister and wish them all the best.

 

Mimi

[Kiera]

EBV (epstein barr virus) should be added to the list. And yes, ALL cases of bipolar (or any psychiatric disorder for that matter) should have pandas ruled out first, by a Dr that knows what he/she's doing, before going down the pschy road. This is what Beth Maloney (author of Saving Sammy) is on a mission tpo get done! Pandas is common in siblings and as Dr K says, no kid can be that unfortunate to have a litany of "diagnosis" after his name,(like my ds9)NO, it's all undiagnosed pandas symptoms! Try antibiotics and steroid burst FIRST!!

[nicklemama]

I urge your sister to check her DD for all of the above recommended. We were told our DS was bipolar II. He does not have bipolar, he has PANDAS. All his bipolar symptoms have gone away w/ treatment. Honestly, I am questioning any early bipolar diagnosis in children. I believe they have PANDAS.

[tpotter]

EBV (epstein barr virus) should be added to the list. And yes, ALL cases of bipolar (or any psychiatric disorder for that matter) should have pandas ruled out first, by a Dr that knows what he/she's doing, before going down the pschy road. This is what Beth Maloney (author of Saving Sammy) is on a mission tpo get done! Pandas is common in siblings and as Dr K says, no kid can be that unfortunate to have a litany of "diagnosis" after his name,(like my ds9)NO, it's all undiagnosed pandas symptoms! Try antibiotics and steroid burst FIRST!!

 

 

Ditto, except the steroid burst. If it actually is bipolar, it can make it worse. She needs to find a PANDAS friendly doc or one who can consult. Since it's a psych hospital, maybe Dr. Leckman at the Child Study Center at Yale might be able to consult with the hospital. He's running the IVIG study at NIH. In fact, maybe she can call and see if her son will qualify for the NIH study. Otherwise, I would be on the phone with Dr. K for a phone consult, and/or getting an appointment with Dr. B., Dr. L or one of the others as soon as possible.

 

BTW, my DS was thought to have bipolar...it's PANDAS. Figured it out because of a position paper that Dr. K. wrote.

[Fixit]

trying to find a couple articles i had on this related to infection...

in the mean time i have these that mention these disorders and methylyazaiton(sp)

so maybe get the 5mthfr gene checked.

 

this part is methyl

at the bottom is an index

 

http://www.alternativementalhealth.com/articles/walshMP.htm

 

this part is bipolar

http://www.alternativementalhealth.com/articles/walsh.htm#Bi

 

schizopharia

http://www.alternativementalhealth.com/articles/walshQZ.htm#S

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC172852/

 

this isn't the article but...there was one about urinary track infections in the elderly and dimentia?

check on herpes too.

i find yeast makes my ds a bit angry.

http://www.nutritional-healing.com.au/content/articles-content.php?heading=The%20Role%20of%20Infections%20in%20Mental%20Illness

[dut]

my ds 4 has that symptom set - ADHD, aggression, ragey, some OCD. If it weren't for his older sister's classic PANDAS onset and symptom presentation I doubt he'd have been dxd with PANDAS. His known triggers are strep, flu and yeast. Others, too, that we haven't pinned down

[sosudden]

There are some good points on this topic. Before I knew 9 year old daughter had PANDAS one of the myriad of symptoms she presented with was bipolar-type behavior. She would cycle from manic (not happy, just manic) to depressed (so down she would make comments about not wanting to live) to manic to depressed - several times within a matter of hours!! Her psychologist did say that typically the cycling moods are not rapid like that. So my daughter went from happy independent 4th grader, loved school, class representative, QUEST program, special chorus, able to do homework anytime anywhere even with younger siblings running amuck, avid reader and amazing writer, question asker, "cruise director" as we like to call her TO suddenly severe ocd, tic disorder, major depression, "bipolar", raging, odd, running away, writhing movements, unable to physically sit still half the time and the other half of the time unable to move from her hiding spot on her chair, unable to walk rather had to hop and spin and fall and slither and do the splits and painfully twist her head and neck, panic level anxiety, phobias. Well, just had to vent! What brave amzing kids we have!! I am so grateful for this forum!!

[colleendonny]

Thanks all. You have been such a great help

 

I just passed all of this info onto my sister. They are tough on money right now, so I'm hoping somebody will be able to help them. Her son is on Medicaid, so I think they will be limited, but I also sent her a list of nearby providers.

 

Surprise, the doctors at the psychiatric hospital has never heard of PANDAS. Can you imagine?!

 

Right now he is on Depakote and Abilify, plus another that I cannot remember.

 

I hate to rant, but why is it so hard for a PANDAS diagnosis?! I too believe that many, many kids get misdiagnosed with having some sort of psychiatric illness. This is something that should be accepted, and psychiatrists and teachers plus many more should be aware of this and educated.

[ptcgirl]

So sad that they don't even know about it. Frustrating!!! My daughter is weaning off Abilify. It really helped her but the side effects were far too intense.

[tpotter]

Thanks all. You have been such a great help

 

I just passed all of this info onto my sister. They are tough on money right now, so I'm hoping somebody will be able to help them. Her son is on Medicaid, so I think they will be limited, but I also sent her a list of nearby providers.

 

Surprise, the doctors at the psychiatric hospital has never heard of PANDAS. Can you imagine?!

 

Right now he is on Depakote and Abilify, plus another that I cannot remember.

 

I hate to rant, but why is it so hard for a PANDAS diagnosis?! I too believe that many, many kids get misdiagnosed with having some sort of psychiatric illness. This is something that should be accepted, and psychiatrists and teachers plus many more should be aware of this and educated.

 

 

Have the doctors at the psych hospital contact Dr. E. at CHOP. She's a psychiatrist, and has done research on PANDAS, and still treats PANDAS kids.