The End of IVIG Phase Two
We have done six continuous months of IVIG therapies, followed by four more treatments every other month.
Today we finish IVIG Round Ten, the end of Phase Two of Hunter's treatment plan.
The mere fact that we don't have to come back until June checks a mark in the win column. If Hunter maintains his progress, we don't have any major regressions, and he continues to stay healthy and strong, we will not have to return for three months, as we enter Phase Three. He should get 3-4 more every-three month treatments. Once those are completed, then we will go every six months..and at that point, we should be at the maintenance level. Dr. G told us once we got to every six months (as long as cutting back doesn't cause problems), we have really overtaken his immune system and it is just maintenance at that point.
Hunter was looking at old pictures, and found one from a couple of summers ago when his Vitiligo had spread to his eyes, nostril, chin, cheek, and fingers.
"What is that, Mommy?" he asked as he pointed to the white skin around his eyes.
"It's Vitiligo." As he asked what Vitiligo meant, so many answers went through my head. How do I answer? An autoimmune disorder? A skin depigmentation disorder? A discoloring of your beautiful face, that once caused another little boy at the park to ask you what was wrong with you?
Or should I tell him that it was another piece to the puzzle that confirmed the autoimmune disorder that had overtaken your body? The first visible clue that something was going haywire...and the first visible sign that we were winning the battle when it started to disappear a few months into IVIG.
Today, I went through the old pictures that somehow transferred over to my new phone- thousands of pictures that I forgot we had, stored somewhere in cyberspace. I was able to see and recall so many memories of this journey with Autism and PANDAS. Many of the pictures brought back hard times, but towards the end, there were more smiles than tears.
The first few days of noticing an arm flap, post strep infection a few months prior. The eye tic had dissipated, but the toe walking and arm flapping remained.
We had to have two EEG's completed, to rule out seizure activity (since he had blank stares with the eye tics). The second one has been burned in my memory- possibly the one of the hardest of this journey. You see, under that soft, silky special blankie was a papoose. He was strapped with three long belts to prevent any flailing of arms or kicking of legs.
My son was unable to move, so the only thing he knew how to do for the longest forty minutes of my life, was to scream, "GET ME OUT OF HERE MOMMY!! SAVE ME!!" I somehow sat there, trying to remain composed for his strength, rubbing his little fingers, as I promised him that the doctors needed to get information and we would never, ever, ever do this again. It seriously kills me to think about that moment. When they finally released him, I hugged that boy as tight as I could and didn't let go.
Then, a few months later, we had to have an MRI of his brain. He had to be sedated, intubated, and as they wheeled him away to the imaging room, I recall the nurses telling us we would want to wait outside. She said most parents didn't want to see the process to get him sedated.
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SO we left this sweet, smiling boy, knowing that the next time we saw him, he would have undergone a scan of his brain to determine if there was a mass, a tumor, or if we would have "normal" results (which we ended up getting).
We flew to WI to see a famous PANDAS physician, Dr. K, to see if PANDAS was a possibility for the changes we saw in our son. After a confirmation of a diagnosis, and a recommendation for a (very successful) steroid burst, and later IVIG, we continued on our search to find yet another physician (or ten haha) to agree with the diagnosis.
We started an intensive outpatient program to focus on behavior, interaction with peers, and transitions. Unthankfully, but really thankfully, Hunter contracted strep while in the program (on 2/11 on behavior chart above). After his antibiotic, his behavior never stabilized. His ups and downs were documented and the lead BCBA told me, "I didn't believe in PANDAS before. This is PANDAS. I have never seen a child with Autism like this before." They couldn't figure out how to control his 150 episodes of non-compliance in three- hour session, which included ripping off this clothes, slamming doors, screaming. We had entered another nightmare, which we had previously seen with strep infections. But this time, we had a team of professionals witness the change along with us. We had to pull him out of his typical preschool and put him in the special ed program full-time. He could not recover. At that same time, after seeing our neurologist, we were granted the opportunity to see our specialist, and Dr. G started a high dose steroid trial. As you can see on the chart above, when NO other variables changed (the program was on strict orders not to change goals or methodology), his behavior stabilized.
This picture was my screen saver for the longest time, because it was four days post steroid. My boy's eyes were alive again. They were happy...and he was smiling more than he had in the past few years
That was the first year in three years that we sang happy birthday to the strongest five year old I knew.
Today we finish IVIG Round Ten, the end of Phase Two of Hunter's treatment plan.
The mere fact that we don't have to come back until June checks a mark in the win column. If Hunter maintains his progress, we don't have any major regressions, and he continues to stay healthy and strong, we will not have to return for three months, as we enter Phase Three. He should get 3-4 more every-three month treatments. Once those are completed, then we will go every six months..and at that point, we should be at the maintenance level. Dr. G told us once we got to every six months (as long as cutting back doesn't cause problems), we have really overtaken his immune system and it is just maintenance at that point.
Hunter was looking at old pictures, and found one from a couple of summers ago when his Vitiligo had spread to his eyes, nostril, chin, cheek, and fingers.
"What is that, Mommy?" he asked as he pointed to the white skin around his eyes.
"It's Vitiligo." As he asked what Vitiligo meant, so many answers went through my head. How do I answer? An autoimmune disorder? A skin depigmentation disorder? A discoloring of your beautiful face, that once caused another little boy at the park to ask you what was wrong with you?
Or should I tell him that it was another piece to the puzzle that confirmed the autoimmune disorder that had overtaken your body? The first visible clue that something was going haywire...and the first visible sign that we were winning the battle when it started to disappear a few months into IVIG.
Today, I went through the old pictures that somehow transferred over to my new phone- thousands of pictures that I forgot we had, stored somewhere in cyberspace. I was able to see and recall so many memories of this journey with Autism and PANDAS. Many of the pictures brought back hard times, but towards the end, there were more smiles than tears.
The first few days of noticing an arm flap, post strep infection a few months prior. The eye tic had dissipated, but the toe walking and arm flapping remained.
We had to have two EEG's completed, to rule out seizure activity (since he had blank stares with the eye tics). The second one has been burned in my memory- possibly the one of the hardest of this journey. You see, under that soft, silky special blankie was a papoose. He was strapped with three long belts to prevent any flailing of arms or kicking of legs.
My son was unable to move, so the only thing he knew how to do for the longest forty minutes of my life, was to scream, "GET ME OUT OF HERE MOMMY!! SAVE ME!!" I somehow sat there, trying to remain composed for his strength, rubbing his little fingers, as I promised him that the doctors needed to get information and we would never, ever, ever do this again. It seriously kills me to think about that moment. When they finally released him, I hugged that boy as tight as I could and didn't let go.
Then, a few months later, we had to have an MRI of his brain. He had to be sedated, intubated, and as they wheeled him away to the imaging room, I recall the nurses telling us we would want to wait outside. She said most parents didn't want to see the process to get him sedated. SO we left this sweet, smiling boy, knowing that the next time we saw him, he would have undergone a scan of his brain to determine if there was a mass, a tumor, or if we would have "normal" results (which we ended up getting).
When he woke, he was so agitated, groggy...Peter and I looked at each other and just held hands, wondering if we had gone too far. When he finally calmed down, we hugged that boy, again, tighter than you can imagine.
And when he was 3 1/2, two days before Christmas Eve, we received the news every parent dreads to hear. The news that your world is about to change. "He has PDD-NOS."
We flew to WI to see a famous PANDAS physician, Dr. K, to see if PANDAS was a possibility for the changes we saw in our son. After a confirmation of a diagnosis, and a recommendation for a (very successful) steroid burst, and later IVIG, we continued on our search to find yet another physician (or ten haha) to agree with the diagnosis.
This picture was my screen saver for the longest time, because it was four days post steroid. My boy's eyes were alive again. They were happy...and he was smiling more than he had in the past few years
And then, one year later, after beginning IVIG treatment in February, he started regular ed kindergarten in August.
Even though the first picture doesn't exude happiness, his after-school picture is victorious.
Today, we finish Round Ten. I think every round, I write "I can't believe we have come this far." But today more than ever, I can't truly believe we are here. And this sweet boy is continuing to fight. So today, we celebrate smiles. We celebrate success.. And we celebrate the power of prayer, determination, and strength.
Continue to pray for our journey. Even though we have finished phase two, we are entering unknown territory by spreading out his infusions. With his behavior and speech the past couple of days, I am TRUSTING that we are continuing to head in the right direction.
Thank you, prayer warriors. And even if you aren't the praying type, just by you reading and checking in on our sweet boy, you are supporting his journey more than you know.
Forever grateful.
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