Sirena

Decisions--definitely an issue..., intrusive thoughts-some benign,some terrifying...extreme worries about things, situations....

DS (age 6) is on a pediatric dose of oxycodone HCl (5mg every 4 hours while awake) because of post T&A pain. He's also on Clindamycin and Azith (since T&A first round of culture results). The interesting thing is that when we give him the oxy and keep to his dosing schedule, our sweet, smart, helpful, kind, kiddo emerges and I just want to hug him and do a happy dance! But, if he gets behind on his dosing schedule by 30 minutes or more, out comes the mean, raging, punching, spitting, emotionally unstable kiddo with intrusive thoughts. Hmm... I noticed that a couple other folks mentioned a bit of a PANDAS holiday while on oxy post T&A and I'm wondering what/why/how is it working and might there be something to learn from its positive effect. Obviously (I assume) oxy would not be a long-term management drug, but maybe it could point to something else that could be okay? He was taking ibuprophen before the surgery and that helped take the edge off, but didn't get us so close to pre-pandas normal. Any thoughts??? Btw, DS had his first day of first grade today and made it through with flying colors with oxy and abx on board. One day at a time...

Hi Dasu, Thanks for the empathy and for mentioning the risperadol. It reminded me that we were given a prescription for that but couldn't get it in a form that would work for our ds. I'm going to try again. Today is a better day..,DS is back on pediatric oxycodone for post T&A pain and it's improving his mood, eating, talking, and positive engagement. jan251, Very perceptive to mention DD as possibly infectious. She's a carrier and complained just this morning of a sore throat. I'm going to get her swabbed tomorrow and try to get her on clindamycin. She's already been on Amox and cefdinir this summer for strep.

DS is 6yo. Pandas full fledged onset this past May... His flares are aggressive, impulsive and often bad language (hitting, spitting, throwing, cussing rages). Not my kid at all... His 4 yo sister is a major trigger. The last few weeks we've been keeping them apart (taking turns at Grandparents house). But even during brief times they are together, DS has had episodes of rages. PTSD all around...we are worried about DD who he has kicked and punched. She knows he's sick but obviously that's not enough. DS is starting azithromicin tonight based on initial results from T&A done last week. Hoping for healing soon but meanwhile, how do you deal with home life? Last night he was a mess. How do you keep non-pandas siblings safe?

Strep B seems to be what got my son going down this road....

A couple other suggestions: try a "dream pad" acoustic pillow. I plays soothing, specialized music to help induce sleep. It works through bone conduction and u only hear it (usually) if your head is against the pillow. Also you might want to try a Heavy (weighted) blanket which was great for our DD. Lastly, if u can get someone to do massage therapy --then download the video directions for "abdominal sleep reflex" from the Masgutova Method website. Www.masgutovamethod.com [btw-the also have a PTSD protocol]. Two weeks of work on that transformed our DDs sleep --quite amazing to me still. Sirena

Hi All, Thanks for encouragement and support. For the record, we are still very new with this diagnosis, but we are lucky that we have a diagnosis relatively quickly (1-2 months from major onset). We have done Lyme and Co-infection tests, but all normal so far. I was worried about those even before all of this especially because my husband has Anaplasmosis. I think we've now ruled out just about all other likely alternative diagnoses and so I'm settling into a PANDAS diagnosis. So, game on! Somehow we'll get through it... Right?!! Holding on, Sirena

I am heartbroken and in anguish. I feel like I'm losing my DS bit by bit. He just learned to ride his bike with out training wheels in May, around the time this mess started and he was so happy and proud of himself. He wanted to ride and ride. He was planning to kayak all summer in his own kid size kayak he got for Christmas. Now all he wants to do is watch TV and play Lego. He keeps spiking low grade temps (99.1-99.9F) and his behavior becomes horrible and aggressive. He's on steroids and antibiotics (Dr. L) but now his other doc thinks he may be having seizures. I feel like he was doing better on ibuprophen...idk....Now I'm starting to worry about whether he'll be able to go to first grade or not. I'm also thinking that if we don't get headway in the next two weeks, we might have to arrange something so that his younger sister is spared from his behavioral outbursts. I am so so sad...I think there should be "PANDAS Coaches"....how can one negotiate this strange territory????

Well, we did the mri and spinal tap today and it went well even though ds was anxious. We didn't tell him about spinal tap, just that he was going to get the "pictures of his brain." Since it was at a children's hosp, staff was great with kids. I wrapped up and brought him a little Lego that we gave him after he got into the gown and did what the nurse needed him to do. It was good to have something new a small to hold his focus and it became a conversation starter for the medical team. I also brought a big set I knew he wanted that happened to be on sale. We wrapped that too but left that in the car until he was sedated. We told him that was for after--for doing a good job. Those Lego really helped because we could redirect his attention to them as anxiety rose. Normally he would have been able to handle more but nor since he got sick he gets extremely upset very easily. In recovery, when he figured out that he had a bandaid on his back, we explained that he had gotten a scratch while he was sleeping and so they gave him a bandaid.

Our 6yo is getting an MRI (w and w/o contrast) spinal tap and EEG (ithink) tomorrow w sedation. First one. Any advice? I've given him a little info--but not much...

Sounds familiar to me too...we have a pans/pandas diagnosis--But after spiking a fever 24hr after starting a second round of amox, his docs r taking a second look.and checking again for myco and also anti-nmda (look up nmda encephalitis). Our 6yo ds had the rages, etc and they responded to otc doses of ibuprofen which bought us some time. Not a cure or total fix but really helped. He's now on steroids and an MNRI and spinal tap may come yet...

You might try A pill swallowing cup. We have the Ezy dose one--available on Amazon and some drug stores...

I don't know about a 16 yo but my lupus doctor ideally wants me at d3>\=60... Our dd was helped with sleep with melatonin, a heavy blanket, and what was the best, MNRI abdominal sleep reflex therapy (www.masgutovamethod.com). You can purchase access to a video that explains how to do it, without doing all the rest. It was insanely effective for us and transformed her sleep (we were able to go without melatonin and heavy blanket.) it was as if her body had to learn how to position itself and relax. You might also check the Moro and fear paralysis reflexes too. My husband and our neighbor have done ozone therapy for Lyme/co-infections and have responded well--just a thought... Sirena

We'e new at this... 6 yo DS just started Amoxicillin (250mg 2x) yesterday and just before giving him his 3rd dose. He just spiked a fever 102.6F and has chills. Seems crazy since for the last couple weeks he's only had low grade temps. Could this be a J-H reaction? Sirena Dx "suggestive of PANS" Strep B infection and scarlettina type rash at onset Sib w active strep A same time History of tick exposure but neg test resuts

Just a couple of thoughts: 1) Do you have a case manager with your insurance or is there a special needs coordinator? You may find them helpful in advocating for appropriate care--but remember, they still work for the insurance and will not necessarily have your child's best interest all the time. 2) If there is some medicine that they want to give him that is not appropriate for his particular condition or previous bad reaction, then you might find dropping the term "contraindicated" into your conversation with the doctor such as "Hmm, I thought Risperadal is contraindicated given his previous reaction to it." 3) Is he on or has he been given any anti-inflammatories? Do they help him? If not, you might insist that they try one prior to trying any anti-psychotics. I still can't believe the difference it makes for my kiddo. 4) You might also ask the treating physician point blank "How many PANS patients have you personally treated?" Also, there are state based advocacy groups for kids with special needs. I have found them to be extremely knowledgeable and great resources. You might want to find them and make a call to a family advocate. They can be helpful in connecting you to resources and helping to know your child's rights and how to advocate for them. They may also know about alternative settings or the possibility of home healthcare to help keep your child safe but at home... Wishing you the best, Sirena

Thank you both. I was able to find some of the archived info too. Very helpful... I think this is just hitting me like a ton of bricks bc we already have a special needs daughter who we adopted at 22months and it's been non-stop therapies, self-education, stress and advocacy and just as she is comng out a winner, now I have this....which is clearly not going to be an easy fix. Ugh! Sirena

Anyone have advice for helping to manage/deal with aggressive behaviors associated with PANS/PANDAS flares for 6 year old? How do you discipline? Thanks, Sirena

I'm new to all of this and would love to PM or talk to someone who's been down this road. Two and a half weeks ago our ds, age 6 got sick and started with unusual and aggressive behaviors. Foul language, aggression, horrible disturbingly mean talk (totally out of character), irritable, then crying jags, baby talk and lack of appetite. Along with this was a scarletinna type rash, and he reported feeling like bugs were crawling up and down his arms and legs--even while he "knew" that there weren't any there. He tested positive for Strep B from a throat culture and a week later his 4 yr old sister pos for Strep A on a rapid strep. DS finished 10 days of Amoxicillin as of last Friday morning and was doing noticeably better Thursday and Friday. Then Saturday morning the behavior issues were back and he punched me and gave me a bloody lip! After I got my wits about me, I gave him some ibuprophen (and a LONG time out), and he did much better for the next few hours 5-6 hours. He's also been mixing up words and sentences intermittently...I would love to hear from someone with ideas about what to do and how to manage until I can get him in to see one of the specialists. Thanks! Sirena