Could this be PANDAS?

[skylarvt]

I am hoping someone can let me know if I am on the right track in looking to have my 10 year old daughter assessed for pandas. Right now she has a referral to get assessed for ADHD and ODD at the developmental center at a well regarded children's hospital but our appointment isn't until June. Some things have come up since we got the referral in January to make me think that we might be dealing with pandas instead. She has always been a very imaginative and energetic kid that tended to be a little distractible, but has always been outgoing and happy. She is suddenly miserable most of the time. Below is a list of her symptoms.

* Intrusive thoughts of self harm, (started overnight and she says she doesn't want to hurt herself but sees images of her doing it when she has theses thoughts).

* Fear of touching anything sharp, will no longer unload the dishwasher unless I take out the knives and utensils first.

* Thinking things are her fault, (if her toddler sister runs into her and falls down I have to assure her that it's not her fault the baby ran into her).

* Asking if she did/said things that were ok after having a nice small talk like conversation,(like at the grocery store, etc.). She will ask over and over again.

* Afraid of the dark and going to bed, is now sleeping on her mattress in my bedroom.

* Has always done well in school and worked 1-2 grades ahead, (we homeschool). She is now barely pulling C's in math and hates doing all schoolwork.

* Very anxious in public, hates crowds now and refuses to go to the grocery store. She says that the lights and the people bother her.

* Very "touchy" and easy to anger, even minor incidents set off a temper tantrum with screaming and door slamming.

* Headaches

* Stomach aches

* Had one other intrusive thoughts episode the month she turned 7. She thought things has poison in them and would not eat anything that I didn't make at home and would not drink out of drinking fountains at the park. She would ask, "is it poison", when I would put her dinner in front of her and would not eat it until I reassured her that there was no poison. We had just moved and did not have a new pediatrician yet and by the time we settled in and found a new ped she had stopped doing this and went back to normal. We thought at the time it was just a reaction to her stress from moving.

* She was sick last July with what I thought was strep for sure, (facial rack, very sore throat with white patches and swollen lymph nodes for a month). i took her in for a strep test but it was negative so she didn't get any antibiotics. She was very sick though, I almost never take my kids to the doctor for colds or illnesses. The rest of the family also got sick but she had it the worst.

* She was sick in December and again in January this year. the symptoms all started in early February.

* Her toddler sisters and I have had some minor bacterial things that may have been strep related. The twins, (almost 2), had very bad impetigo diaper rashes around when my 10 year old started having the behavioral changes, and I has mastitis two weeks ago. Both are usually either caused by strep or staph.

Does this all sound like it could be pandas? Should I take her in a request a strep test, or just request antibiotics?

[skylarvt]

Also, I wanted to add that I have another child with an autoimmune disease, (celiac).

[ejh]

Yes that does sound like PANDAS. I would contact a doctor with experience with PANDAS and get treatment asap.

[lw47]

Maybe- I would to to pediatrician first and get strep test, plus ASO Titers. If positive find a pandas specialist. If negative, would still consider a consult with pandas specialist, as sounds suspicious.

[pr40]

you can ask your pcp for blood test -- check out pinned material and suggested tests -- and start recommended abx right away.

if pcp is uninformed, you can refer him/her to NIH page on PANDAS.

no need to wait for a specialist visit

and by the way many Children's Hospitals are enemies of PANDAS. check out if the one you have apt with is in this class.

[EAMom]

Yes. This sounds like exactly like PANDAS.

​Your pcp can join here and they can give him/her some guidance https://www.pandasppn.org/

 

I would start with getting all family members swabbed for strep (throat swab). Do the 72 hour culture if the rapid is negative. Also, check the kids for perianal strep (a reddish area around the anus). Then go from there (you might not need to run blood tests if the swab is positive).

​Where are you located?

Edited April 1, 2016 by eamom

[skylarvt]

Thanks for all of the info. I took my daughter to the nurse practitioner we see for the kids on Wednesday and he did think that PANDAS was a possibility but warned that it is not all that common and recommended that we get in with UCLA psych if the intrusive thoughts continue, (we live an hour from Los Angeles). He also said that he does have three other PANDAS patients in his practice. He did a swab with 72 hour culture, and ASO and anti-dnase blood tests as well as allergy tests, (unrelated but we were taking blood anyway and she has been stuffy). He prescribed two weeks of antibiotics and said that she will be on them for at least 4 weeks at a higher dose, we will check in when the two weeks are over to see if we will be staying on the same antibiotics or trying a different one.

I am cautiously optimistic right now as we had a pretty good day yesterday and my daughter was able to do her school work today without a meltdown. She even told me that it was easier for her to focus today. She has not had any intrusive thoughts since Wednesday.

[Wombat140]

Hi Skylar, glad to hear things went better on Thursday, how are things going now? Did she have high streptococcus results? And is she getting better (in sync with the antibiotics, or anyway)?

[kakrpa]

I agree with the other responses on here that yes, this is highly suspect of PANDAS. Especially if this is kind of coming out of 'nowhere'. What kind of antibiotic was she put on?

 

What kind of tests were run? IMHO it is hugely important to test not only for strep but other potential triggers as well (mycoplasma, coxsackie, EBV, etc.) so a bit more bloodwork is in order.

 

Keep us posted!

Edited April 6, 2016 by kakrpa

[skylarvt]

Thanks, my daughter is still feeling better. She is about 80 percent back to normal already. The np ran a strep throat culture, aso titer and the DNase titer. The throat culture was negative but the aso titer was high so he is officially calling it pandas. She is on 875mg of amoxicillin 3 times per day, (she is tall for her age and 100 pounds). I think he is going to do another two weeks of that and then a lower dose after that for a while. Should the rest of the family get treated for strep as well?