Tattoomom

Do you have a link to that study?

Life has been sad in the Thoren house. We were hit last month with a cold/cough that didn't miss any of us, and my Olivia (10), who has been my least affected panda, has totally changed were since being sick. She was diagnosed at 7 with over-night onset and tested pos for strep, but was never as bad as her older brother and younger sister. Now, she's crippled with OCD and intrusive thoughts. She's completely lost her spark. She sad and scared. I am so over this and hate that it fucks our lives up so much... Robbing my kids of childhood. Dammit. So, I stepped up her abx from prophylaxis to treatment and have an appt for next week with the Psychiatrist. What can I do to help her? Giving Advil & Fish oil. She's not the same. My little girl is like an empty shell. Tricia

Only MTHFR. I want to do the 23andme testing soon. How are you treating it?

None that I know of... maybe I can post her lab result...

Could the T&A have caused this horrible tic flare!?? What do I do?!

The good news is- Ava's Lyme test was negative. The bad news is- her MTHFR came back with 1 copy- C677T.

Ava had a tic come up wight after her T&A surgery 3 weeks ago. Despite being on Tenex, it's gotten WORSE! It was just a neck/shoulder/head tic, but now she's making a noise with it and swallowing/gulping. It seemed to get worse when we switched from Clindamyacin to Augmentin a few days ago. Does this mean Augmentin isn't a good choice? Should we go back to Clinda??

What are your favorite, affordable, strep-free probiotic brands?

She's had several strep infections, even breakthrough strep.

Starting to have my reservations about Ava's T&A surgery! The closer it gets, the more I want to back out!! I'm not afraid of the anesthesia or the actual surgery really, just the recovery. She doesn't heal very well. The first few years of her life, she had a compromised immune system and even at 4 years old, she gets infections very easily. I'm sooooo worried about her getting an infection and regretting letting anyone cut on my girl! The child ended up in the ER a few months ago with a massive infection on her foot from stepping on something that barely broke the skin! Is this surgery really worth it?? She never had high titers so that's not something we're watching. We're just trying to eliminate strep. I've heard mixed reviews about T&A keeping strep away.

Talk to me about Tonsillectomy/Adenoidectomy surgery. ENT yesterday went well. Scheduled for surgery Aug 9th. He said he'd like for her to stay over-night, but left it up to me since I know her best. If she stays the night, they would have to keep her sedated. She has MAJOR medical anxiety. I can see her yanking the IV out and screaming and her poor raw throat killing her. What did you all do? What are the protocols before during and after surgery? Abx wise. How did your kiddos due with the surgery? BTW- she's 4.

I'm not seeing MTHFR on the 23andMe website? Do you feel like the test was worth it? Did it give accurate results?

Our Ped offered to test for MTHFR, but said it can interfere with getting life insurance later. Thoughts? What test did you use when you checked for it? Lyme... we haven't tested for that yet either. Again, which test? Did insurance cover these tests or is it typically OOP? What are the treatment protocols if found to have these?

We did test for mycoplasma, which was negative. Never tested for Lyme, but she's never had a tick bite. Not sure if there's other ways to contract it?

The fact that she responds so well to steroids, does this mean she's a good candidate for IVIG? Any ideas on how to find out if there is an infection lurking? We have an ENT appt. scheduled for July 11th to see about a T & A. We have a wonderful ped who has helped us thus far and she wanted us to lower the daily dose of Zith to M,W,F, but obviously, that back fired. Any advice on combo abx?

She was on Augmentin for a long while (6 months?) and been on Zithromax about a year

So, we've had a backslide recently while trying to lower her (dd4) Zithromax dose and all her PANDAS symptoms are back. Sooooo, we decided to do a 5 day steroid burst and within 2 hours of taking the Prednisone, she's HAPPY and LAUGHING and PLAYING and being a NORMAL 4 year old!!! What does it mean? Why do steroids help her so fast? Where is she hiding and what does Prednisone do that brings her back? I know steroids lower inflammation, but I'm just trying to understand what this means. How she can go from miserable to angelic in 2 hours of her first dose?

I am so jealous of parents with NT kids. My best friend came over this past weekend and she fussed at her kids over everything (made them eat every bite of their dinner, told them to stop running in the house, threatened to spank, etc....) and I'm just quietly observing her thinking in my head, "I *WISH* my kids would just eat a little bit of dinner and I would never make them clean their plate. I *LOVE* when my kids are running in the house, it means they're having fun! I know it's hard to compare and I can't expect her or any other parent to understand what it's like to have a PANDAS child, but it sure makes me appreciate the small stuff. I have days where I'm so angry and feel like, "Why me? Why do my kids have this? Why???!!!" PANDAS pretty much rules our lives. I'm trying to find the good in it.

Here we are over a week later and she's still a mess. We have a new symptom. Depression. Well, she's only 4, so maybe she was depressed before and is just now mature enough to put words to it, but she's sobbing at the drop of a hat and is saying things like, "I hate my life!" over everything. It's terrible

Ds (PANS) has had a mouth stretching tic for about 6 weeks now. He started a steroid burst (6 days) a few days ago, so we are half-way through it and his tic is WORSE! Is this typical? I was hoping he'd calm down, since steroids help our 4 yr old PANDAS child.... He does seem happy and calm, just ticcing away! lol

How long has she been on it daily?

So, this past week was our first week trying to go from daily Zith (since September) to M,W,F dosing. She was fine until last night. She started complaining that her throat was killing her and she was slightly warm. She was due for her Friday dose anyway. I gave her some Advil and Zith before bed. She woke up this morning with OCD, rage and agitation that we haven't seen in months. OMG. Does this mean she cannot handle anything less than once per day?

We are lucky enough to have a board certified Holistic Pediatrician. She is eager and willing to help, but she only works 3 days a week. Her partner (not holistic, but tries) is who we are seeing today. We cannot afford a PANDAS specialist.

Going to Ped tomorrow. PANS son (12) is in a flare and has a mouth stretching facial tic. He's on Zith 3x's a week (M,W,F) and Zoloft. What should I ask for? Daily abx? What's the protocol to deal with flares? Also, any links to print info on long term abx use? I hear from a lot of parents that their kids are on MULTIPLE abx DAILY. How do I get them to see that?! They are constantly wanting to "wean down" or "wean off" when my kids clearly need the daily dose! And the most we've been on is once a day Zith. Then they wanted me to spread it out to once a week! When my daughter caught strep on once per week, they agreed to 3x's a week. I just wish there was something I could print out and bring with me tomorrow. I need to walk in prepared!

YES! I've definitely noticed this... However, my youngest PANDAS child had an autoimmune blood disorder before PANDAS, Autoimmune Neutropenia. She had an antibody attacking the neutrophils in her white blood cells. She eventually outgrew it, but it took years. I don't know where the 3 week cycle mentioned above came from?