IVIG#10

March 10, 2015

IVIG#10

We have been in IVIG for just over a year now. We started February 10th, 2014....and this week, we are completing Round TEN.

The past few weeks have not been as positive as those before. A little fever virus, stomach bug, full moon, and inconsistent school days due to bad weather have all affected Hunter's behavior. Reviewing the past year, rounds 1-3 were incredible. Even though we had a scary reaction with a full body rash that lasted almost the entire month, we had smiles, compliance, happiness...we were living the dream we had imagined the year before.

Rounds 4-5 continued to provide relief. We were beating this Autoimmune disorder, to the best of our ability.

Month 6 (last monthly round) changed things a bit. Paige had strep, and Hunter's behavior plummeted. We were desperate for our son to come back to us, so we opted to give him a prescribed antibiotic for a sinus infection. His regular pediatrician and PA saw a change that was not going away. We made a decision based on the best knowledge and parent gut we had at the time...and we started seeing a change as soon as the antibiotic started to work.

We also made a decision that almost ended our treatment. His treating AE (autoimmune Encephalitis) doctor met with us and explained the desperation that we fell to. We gave an antibiotic based on behavioral, not physical, symptomology. He reminded us once again that we are going to have dips in behavior- regression will not go away. Our bodies are constantly fighting viruses, and when Hunter is exposed to triggers, we will have to deal with regression. Antibiotics should not be the first response.

We stood by our decision, as we didn't give the antibiotics sitting in our pantry on standby from another PANDAS physician, who had previously recommended doing a daily antibiotic. We had more belief in maintaining good gut flora, which is tied directly to the immune system. After a previous issue with high yeast, we wanted to continue to "heal the gut, heal the brain." But after watching our son, who had blown our minds with his improvement with five rounds of IVIG, fall into a deep regression which included rages, door slamming, non-compliance, and strong anger bouts, we had convinced ourselves that his strep antibodies were raging. So we gave the script hoping to give him some relief.

We promised our treating AE physician that we would not run to the antibiotics for every regression, and told ourselves that we would not expect perfect compliance just because he was receiving IVIG. Normal children aren't perfect all the time.

Rounds 7 and 8 were great. Transition back to school after Round 9 was difficult. He had just had Christmas break, and then missed a week of school for IVIG. His teacher told us he "seemed different" that week. The fever virus and stomach bug ensued, and in-home therapy was pretty rough. Last week seemed to get better, even though school days were not consistent.

So here we are in Round 10. Yesterday's IV insert was the quickest yet. It took longer for him to swallow his pre-meds than for them to stick him and get the IV started. He woke up last night around 2 AM because he didn't feel great and he was thirsty. He was awake in our bed until at least 4:30 (or that's when I last looked at the clock). But as he was talking in our bed, I couldn't help but be thankful for the chatter that I was hearing. His complex, well-scripted sentences that I always notice the week of IVIG. It's like his brain is saying, "Aaahhhhh....thank you for lifting my brain fog."

Peter and I might be asking for a coffee IV this morning, but we are still hopeful that we have reached this year mark and have yet to see the max potential of IVIG treatment. But at the same time, if this is our new baseline, we are still very, very, very thankful to be here. What a difference a year makes.

Peyton's bday celebration continued with opening gifts on his real bday- first day of IVIG...

Making pictures at the hospital- sad face drawing, but big smile on the birthday boy

Throughout this journey, we have truly seen examples of Christ in our friends and family. So many who have supported us in friendship, as well as prayer. This sweet family offered to take Paige on Monday so she wouldn't have to spend it in the hospital, and on their own, the girls decided to make Peyton a birthday cake, complete with a collection of Storm Troopers. On a day that was extremely difficult for us to make Peyton feel special, they did- and it meant the world to me!