DOES THIS SOUND LIKE A PANDA CASE? HELP!

[swarmie]

On Nov. 9, my 6 year old daughter started to exhibit very sudden, significant changes in behavior. I have been told her behaviors fit mostly under the Scrupulosity category of OCD. Some examples of behaviors include my daughter saying, "I want to worship Satan...Daddy, I'm afraid Mommy is going downstairs to get a sword and kill me...I'm afraid the church will kill me...I want to worship junk more than God...I feel like dying is interesting...I kind of want to make a fire, but I know I shouldn't." These type of statements seem to have come from no where??? For 4/9 days she has shown emotional lability (crying for no rational reason). She does not present with a physical illness, nor has there been any significant changes in her life that would elicit such sudden, odd behaviors. She is homeschooled; she has not been alone with any strangers that could have caused her trauma.

 

We took her to a pediatrician on Nov. 16, who admitted her in the hospital for a diagnostic workup. They did a couple of blood tests (including a titer...to test for strep within last 6 months), a throat culture, and an EEG. All results were clean. Five child pschiatrists examined my daughter during her hospital stay, and they all agreed she did not show psychosis or exhibit behaviors associated with non-organic OCD. None of the professionals are familiar with PANDAS. Never diagnosed or treated a patient with PANDAS.

 

What do you think? From your experiences, is it possible my daughter may have developed a PANDA despite low ASO-titer and D-nase B titer numbers (which indicate no strep within the last 6 months)?

 

Also what is interesting is that my daughter's behaviors seem to have waned. For at least 3 days in a row, she exhibited as much as 13 behaviors/episodes in one hour. For the past few days, she has only exhibited approx. 5 behaviors in one day.

 

Any advice would be greatly appreciated. My husband and I want to help our daughter any way we can.

 

Thank you.

[Kayanne]

During all of these tests was a rapid strep test given, and then a back-up culture?

 

Was she sick at all prior to these behaviors?

 

Any rashes, sore bottom, pimples on the skin?

 

I think your daughter does sound a lot like she has PANDAS. Elevated strep titers are not a "test" for PANDAS. Some children do not get a rise in these antibodies.

 

If you post a general area of where you live, people may be able to suggest a doctor to help.

 

Also, visit the pinned threads at the top of the forum, and try to read as much as you can. Many of your questions will be answered.

 

I'm sorry your family is suffering right now...Good luck.

[EAMom]

 

 

What do you think? From your experiences, is it possible my daughter may have developed a PANDA despite low ASO-titer and D-nase B titer numbers (which indicate no strep within the last 6 months)?

 

 

 

YES! Absolutely. My dd has always had low strep titers, even when she had positive cultures and PANDAS severe enough to require hosp. (for malnutrition, acute food refusal, OCD).

 

I would rec. testing other family members for strep (throat culture, possibly titers if those are neg) to make sure there isn't a carrier in the family (it turns out our younger dd was also culture positive). PANDAS kids can react to strep in the environment.

 

It could be that your dd's titers aren't elevated b/c she's just one of those kids that doesn't get elevated titers (like mine seems to be). Or perhaps her titers were elevated a while ago, and they've since dropped. It doesn't really tell you if she has a current strep in infection (rising titers might give you an indication of that).

 

RE the neg. cultures...sometimes throat cultures are neg. yet kids have strep "hiding out" in other places (like sinuses).

 

Or, perhaps she had strep a long time ago and now she is reacting to a non-strep illness (PITANDS).

 

Here is a thread on FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

 

Consider getting a Cunningham test (via the Univ. of Oklahoma) when the lab reopens (I think after the holidays?)

 

These podcasts are also a good "intro. to PANDAS" http://www.latitudes.org/forums/index.php?showtopic=3928&pid=75348&start=&st=#entry75348

 

Where do you live? maybe someone can rec. a doc.

 

Is your dd on any meds or abs right now?

 

As an interesting note: an unofficial survey by my dh revealed that girls are much less likely to get elevated strep titers vs. boys. That is even when the girls had positive cultures!

Edited November 18, 2010 by EAMom

[texascatholic]

Definitely sounds suspicious. I would check for PANDAS (via the Cunningham test) and check for LYMES. We don't have high strep titres either. This is so hard! May God grant you the wisdom you need to help your daughter. We also homeschool. Please PM me if you have any questions.

[butterflymom]

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Edited February 2, 2016 by tampicc

[Cassi]

My daughter had low titers and we did the cunningham study anyways. Her scores came back really high. I called Dr. Trifelitti and he put her on abx and ordered some other blood work - one of the labs was mycoplasma infection. It came back really high and Dr. T said this what was causing her symptoms and not strep. So my dd had PITANDS. Other things like mycoplasma and lyme can cause the same symptoms as strep. Doctors usually test for strep first because it's the most common. See if you can get the blood work for mycoplasma and the lyme western blot

[peglem]

ASO and AntiDnase tests cannot indicate negative for prior infection, they can only show positive for prior infection. Low titers do not rule out recent infection. Many, many children (even those who do not have PANDAS) do not get a titer rise, even with positive cultured infection. Most docs are not up to speed on what low titers mean.

 

The symptoms your child is experiencing- could be caused by a variety of infectious agents....do not accept "she just has OCD" as an explanation. OCD is a symptom of something...try to find the underlying cause. Maybe you can't and you'll just end up treating symptoms anyway, but, not finding the cause is not the same as saying there is no cause.

 

I agree w/ all of the above- check for strep, check for mycoplasma, check for lyme. Sometimes, too, these things happen after an infection and its a one time deal (my daughter's pediatrician has treated a few kids that happened like that).

 

You are amazing to have caught this so quickly...very good chance that it will not go chronic if its treated quickly.

[T_Mom]

--since we are all jumping in with a response that might be indicative of something! -- that we can all relate!

 

Do not go by titers. Those, and/or a negative strep test can steer you in the wrong direction. I agree, read, read, read the posts under the "helpful threads" and then if it was me, knowing what we have been through, I would run (not walk) to someone that knows PANDAS and is willing and able to TRY to help.

 

The key thing you said is that you know the day "it" started...Sudden onset OCD is not normal OCD. Treatment is different as well. Best thing we did was "try" antibiotics.

[EmersonAilidh]

Absence of proof is not proof of absence! I'd look more into P.A.N.D.A.S. & check into Lyme (+secondary/co infections) as well, especially if she has any physical symptoms & if you live in the New England area. Lyme co/secondary infections are Mycoplasma, Anaplasma, Ehrlichia, Babesia, & Bartonella. Just something to look into! Has the Scrupulosity been the only symptom? If at all possible I'd get into touch with Dr. T. You can also email Dr. Miroslav Kovacevic in Hinsdale, Chicago. He can't tell you much through email, but he can at least tell you if he thinks you're on the right track!

 

For now, I'd just look into some tests & trying to pinpoint any possible infections. Any vaccines recently? I don't have problems with vaccines, but lots of kids on here do. I'm so sorry you're going through this! But, you've got help here. We're our own little family on this forum. <3

Ask me anything you need!

[swarmie]

Thank you so very much for the responses to my plea for help. It is so nice to be able to communicate with other families, like you, who can offer support and advice. My brain is now mush at this late hour, but wanted to make sure to pass along my thanks before my night ended. Tonight, my daughter said to me, "I have a lot of bad thoughts and I think about death a lot...I want a doctor to take these thoughts away." How sad is that? Anyway, I emailed Dr. T for advice. Today my best friend who has been helping me found a family in KY, my home state, who has a child diagnosed with PANDAS. So, I also emailed the mother of this family with the hope she can direct me to a ped. in KY who has successfully diagnosed and treated PANDAS.

 

If you are comfortable, please pray for my family, that my daughter receives the help she needs. Even though I don't know your situations exactly, my prayers go out to all of you. You are not alone, and there are people who do care.

 

Thanks again.

[Mary M]

Your dd's story sounds strikingly similar to my dd's age 7 1/2 PANDAS episode. She did not have elevated titers yet was experiencing scrupulosity and wanted to die. The pain in a parent's heart when their child cries out for death...the fear the child must feel...

 

My daughter also exhibited extreme emotions--sorrow as well as what could only be described as anger yet was something so far beyond anger. The range of behaviors among PANDAS is wide.

 

Thank goodness you found this site and the support that it will bring. I'm pleased to hear you're seeking out the other PANDAS family in KY.

 

It would be so beneficial to find a doctor who will prescribe antibiotics ASAP.

Mary

from Michigan

[colleenrn]

It absolutely sounds like it could be PANDAS. Has she been on any antibiotics? If not, I would strongly suggest that somehow she gets on antibiotics. Only one of my 4 kids has ever had an elevated strep titer and they have had strep many times. Hopefully Dr. T will get back to you b/c he can call in a Rx for antibiotics for you.

Colleen

[KaraM]

I don't live in KY, but got this name off of the PRN list. This list is made up of names parents recommended because they had a good experience. It does not necessarily mean they are PANDAS experts - or that they are accepting new patients. But if you are struggling to come up with someone to see locally, you could start here.

 

Dr. Vinay Puri Neurologist

601South Floyd Street 500

Louisville, KY 40202

502-589-8033

I think a lot of the parents on this board, myself included, would recommend going straight to one of the top PANDAS docs if you can, though.

 

From what I understand, Dr. K in Chicago and Dr. T in New Jersey will do phone consults.

 

Dr. B is in CT, Dr. L is in Maryland.

 

I can give you the contact info for any of those if you want to pursue. You can also find them in the doctors list pinned in the Helpful Threads section at the top of this forum.

 

Kara

Edited November 19, 2010 by KaraM

[tantrums]

I'm so sorry! I was in your shoes just about this time last year. My son's first presentation was scary obsessive thoughts along with major separation anxiety. We did have a positive culture and then high titers so I guess it was a bit more "clear cut" for us. Doesn't make it any easier I'm sure

 

Hang in there and just keep learning all you can and advocating for you daughter.

[3boysmom]

Did she happen to get any resent vaccinations or the flue shot? Keep pushing on for answers....the above posts are very good suggestions! These parents here (and young adults) are very smart and helpful. Welcome and prayers at the same time.

 

Linda