Archive of ‘PANDAS’ category

IVIG Again: Second time’s the charm?


After all the ups and downs of the last 5 weeks, we are doing IVIG again. This means B spends 2 days in his Neurologist’s office receiving donor antibodies via IV in an effort to bring his immune system all the way back, steroids for the migraines and immune reaction to the new antibodies, and saline for hydration.

Then we hope he won’t have the migraines and vomiting, a common reaction, which he had after last time.

He did well today. It’s very hard for someone with a OCD fear of vomiting to let you do something he knows will likely make him throw up. I can’t imagine the stress in his little head-but it is palpable as we peel him from the car and hold him on our laps while his heart pounds away.

I share because, the invisibility of this illness and its psychological manifestations causes many to blame and question children and parents. These are sick kids who need extreme medical intervention.  Treating the symptoms (OCD, ADHD, anxiety, etc) will not cure them and may cause harm. Families need more medical professionals knowledgeable about PANDAS/PANS and insurance coverage for these doctors and procedures.

In the months since B’s last IVIG we have had huge gains. Our hope is that doing it again will bring our son all the way back and give him much needed relief from his symptoms and a chance to just be himself without the demons that have made everyday such a struggle.

Is the end near?

Ali and B PL

Me and our miracle!

Well, It’s been quite awhile since my last post. I dilly dally on giving updates about our son’s condition because it is so variable. Right now, I want to shout this from the rooftops:


What??!?! I know, it is total awesomeness to write that. We have seen slow but steady improvement since about the middle of July. You may remember he had dental surgery in March, after that we saw steady improvement (in PANDAS-land that means week by week, not day by day as things never seem to go in a straight line!) until he came down with something in May. He was sick for a weekend, but it was different from other illnesses as he did have a fever and a rash. Often he has his autoimmune PANDAS response, but no normal illness symptoms.

We don’t know what it was, but a strep test came back negative. Although, he has been poked and prodded and is so fearful now that it’s impossible to tell if they actually get a culture or not. He was super chill while sick but once his immune response got going, the PANDAS symptoms (OCD, anxiety, echolalia, mood swings, and sleep disturbances) heated up again. That continued through mid-July, when he lost a tooth, too. There is anecdotal evidence that mouth bacteria getting stirred up when a tooth is loose or dental decay is present causes more PANDAS symptoms so that may have contributed to the craziness as well.

B and Winter PL

I thought B would love the story of Winter the dolphin. Especially because we’d be nearby in Florida. NOPE. No way, cried and had a fit when I told him about it last summer. This summer…. watched the movie and then went to see Winter in person. Guess who cried that time?!?!

From mid-July till now, we have seen more of B’s personality than we had over the last 18 months. Oh, how it makes me teary to think how long he has dealt with this. There are still ups and downs, but overall he is himself. It’s so weird to say something and him laugh and make a joke about it. Or to tell him “no” and hear a reply of, “okay, mama”. These are things that just didn’t happen over the last year.

I think at some point, I had to stop hoping for him to come back to us, because I didn’t know if he would be forever changed by the lost year and a half. I didn’t know if he would be a different person. I wondered if we’d have huge discipline issues because, you can’t discipline a child with PANDAS. They don’t respond to caring, to cajoling, bribing, or punishment, or reward charts unless their brain is working enough for them to govern themselves. And for the greater part of the last year and a half his wasn’t. We let rules go. We looked or ran the other way.

He isn’t symptom free. He is super stranger weary and still having a hard time separating from me. And yet, if he panics and cries about something, I can comfort him and he responds. When he acts up and tests a limit, I can ignore him and he comes round when he’s ready. He plays with his sister for hours and we’ve signed him up for golf camp in a couple of weeks. I’m hoping I won’t also have to go to golf camp, too, but even if I do, it’s such a big deal that he is able to go and interact with other kids and a camp counselor for a day.

He’ll just come scampering through the house and throw his arms around me and tell me he loves me. I think he can’t believe it either.

So while we enjoy the last few weeks of summer, we celebrate and we hope. Much love and thanks to all of you out there!

I Scream PL

Ice Cream in Georgetown! Before our last Neurology appointment for a long time, we hope!!!!

My son

B's Camera Art PL

My little boy is quite taken with photography this year. Sometimes he takes his photos and turns them into abstract art.

I know, I know. It’s been a long time since my last update on our PANDAS journey. Honestly, I just couldn’t share until I was sure…. but now I’ve decided that may be too long a wait.

We did the IVIG (click here if you don’t know what I’m talking about) in January and then just let it ride. We had some epic tantrums-we were warned the IVIG could cause an increase in PANDAS behaviors before the turn around-the tantrums were about one a week the first 4 weeks. EPIC! As in, what was I thinking taking this child out in public? Can we get out of here before someone thinks I’m kidnapping him and we get arrested?

The 3rd and 4th week we went on a vacation I had planned last fall when things were rapidly improving. I was a bit nervous as that is the period when things can get a little crazy (all the symptoms flare up) post-IVIG. But other than 2 big tantrums and our usual low-level hard to tolerate PANDAS (think difficult behavior much of the time-back talk, whining, etc), we saw a lot of improvement. B was willing to stay with my mom one day while I ran to the store to get his antibiotic refill-first parental separation in about 2 months! And he played and played with cousins and kids he had just met. When the PANDAS is bad he is usually in more of a clingy, ‘I wish I could play’ kind of place.

B Bday PL

After we returned to Maryland, the big improvements continued. With B making friends at a museum and playing with kids pretty much everywhere we went for a week. He also started talking to adults again! Yay! He’s talking to strangers. It’s a weird place in my head.

And then the crash!!!! This is what is so hard about PANDAS. It feels like every time I get my hopes up and start to think, “yes, this is it, he is coming all the way back this time” things takes a reversal and he starts to decline again. And let me tell you, that gets harder every…. single….  time.

We’re not sure why his symptoms started to get worse. I could see a noticeable decline in his handwriting, and the anxiety and the acting out was increasing rapidly. We did have some colds go through the house. This can increase PANDAS symptoms (even if the PANDAS child doesn’t seem ill) as it gets their immune system more active. Remember, our real problem here is antibodies attempting to do their job but attacking healthy brain cells instead. B was also in need of some major dental work. He had 6-7 cavities and multiple dentists told us they thought he would need root canals and maybe some teeth pulled. Ugh… .are you kidding me??? He’s 8 and already been through hell! We think the syrupy liquids of the constant antibiotics has caused a lot of trouble. But again it’s part of the guessing game. The other question was, ‘is the inflammation under these teeth causing a larger immune response and increasing his symptoms?’ Due to his level of anxiety and the amount of work we scheduled total IV sedation.

Dental Surgery Recovery B 2016 PL

Recovery from dental surgery a couple weeks ago

So… last weekend, things started looking up again. On Tuesday we did the dental surgery and it went well. This Saturday, we had a symptom free day. I’m not sure we’ve had one of those all year! So, once again we are waiting and hoping and terrified about being optimistic.

Easter 2016 PL

Happy Easter!

I’m trying to get back to blogging and will continue to share our PANDAS story. Thank you for the continued love and support. Much love from all us.
~Ali, Chris, B, & C

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