IVIG follow up with
Friday was our three month follow-up with Dr. G after undergoing three consecutive monthly infusions of IVIG. We did a lot of praying this week- not specifically for more IVIG, but that the next decision we would have to make as parents would come easily.
Hunter walked in to the patient room, but hesitated at the door- "I don't want to get my blood drawn!" We reassured him that this was just a "talking" appointment, and he relaxed, holding Iggy on his lap. Peter put Iggy on the doctor's chair, and we had some giggles as we talked about what Iggy would do as a doctor. We told Hunter to leave him there until Dr. G walked in, and see if he would notice his blue bear sitting with his arms and legs folded on his roller chair.
After Dr. G walked in and shook our hands, Hunter stood next to the patient table with his finger in his mouth, and a big smile on his face. "Who is this?" Dr G asked, pointing to Iggy. Hunter giggled and proceeded to tell him all about Iggy. He bantered back and forth with Dr. G for multiple exchanges, and the surprise and happiness was evident on his face. He later told us that that was the most interaction he had with Hunter since beginning this process a year ago. Win!
We then began to recount our observations from the past three months. I had kept weekly notes in my planner, so we told him the good and the bad. We told him that after month two, we saw significant changes, and after month three we experienced a two-week regression. I provided him with handwriting samples that I took pre-IVIG, post month 1, 2, and 3. Fine motor skills are often affected with PANDAS, and with recovery, the changes in handwriting speak volumes. Compare his size and accuracy below. Win!
He then wanted concrete data from our ABA therapists, so we gave him an 18 page document containing graphs that illustrated our progress over the past three months. He was ultimately impressed when we told him that he had gone from 25 hours/week of a full-time aide at school to 0 hours/week. Win!
He told us that he recommends continuing treatment, but of course, we have several options as parents.
1) Stop. See how long his progress maintains; could be a helpful diagnostic tool of how far apart the IVIG can be and stay consistent.
2) Decrease the frequency to every other month for the next six months. He said the standard system is to start with a consecutive dosing, and then space out the infusions. The minimal time for consecutive treatments is three months, with six months being the max.
3) Maintain the same monthly frequency for the next three months.
I asked him the big question on my mind- are we looking for continued improvement, or are we hoping to maintain our current level of functioning?
Dr. G always has good analogies to help us understand our options. He told us to think of it like a poker table- are you all in? He said that there are definitely gambles; if we space out the infusions and he regresses, then we need to look at the timing (but he didn't think we wouldn't be able to get back to the level we are currently). If he plateaus, then we also need to look at the timing and wonder if we pulled back too soon. If he continues to improve, then we know we hit the jackpot.
He told us to expect some regressions- with his autoimmune disorder, his opinion (and this is where he said we differ) is that the trigger doesn't matter- whether it is strep, or flu, etc, if his system is stressed, the symptoms will get worse. The immune system is susceptible to the environment. We are attempting to create a bigger threshold- as it was lowered due to his acute illness at the start, with autoimmune disease of the brain it doesn't take much to flip it over. We are trying to move that threshold back up so that it would take longer or a much bigger illness to cause regression.
We asked him at least 45 minutes worth of questions- the protein overload to the kidneys, the rash (wasn't completely convinced it was related to IVIG), MTHFR (has read many studies on the efficacy of 23 &Me and doesn't recommend relying on the test), his high strep titer from the last blood draw (he said we need to discount blood draws while he is undergoing IVIG- he would not treat unless his titer was four times the allowed amount (Hunter's was two times the amount), and three other important factors:
1) His Vitiligo- Dr. G immediately noticed it on his face, but it is getting warmer outside and his increased sun exposure (even with sunscreen) makes it more apparent. He was hoping the Vitiligo would stop progressing with the IVIG (even though there are no documented studies). Peter and I decided to measure the spot on his hip so we could determine if it was increasing or staying the same.
2) His MRI had a report that there was an increased T2 signal in the white matter- we read that increased white matter signal changes on the MRI may also be seen in patients who have infectious or inflammatory conditions. He said he sees that wording frequently on MRI interpretations and it wasn't a concern for him at this time.
3) His immune system with starting kindergarten in the fall. Does IVIG lower his immune system? It actually does the opposite. IVIG is given to immunodeficient children to improve their immune system, so they can fight off illnesses. He said to remember that we are all fighting many viruses every day. Hunter is receiving antibodies from adults (thank you blood donors!), so he should be even more protected. The IVIG augments the normal immune system; it doesn't suppress it.
After a weekend to think about our options, we have decided to request the next three consecutive months of IVIG. With Hunter starting school, we would rather have him miss the time during the summer vs. the school year. We think (and hope!) that we are just beginning to see the initial stages of recovery. We have seen many glimpses of Hunter pre-PANDAS/Autism and the improvements are both optimistic and exciting.
We are not ready to wean him off of the very procedure that has brought him back to us.
After three more infusions, we will reduce the frequency and hope that he will maintain as we continually drop to minimal medical intervention.
So now we pray.
We pray that insurance will agree with Dr G's recommendations and well-documented progress over the past three months.
We pray that the infusions will be well tolerated and Hunter will not have any adverse side effects.
We pray that he will continue to improve and his autoimmunity will be challenged.
We pray that we will build a bigger threshold to fight against the strep monster.
We pray that he will comprehend his therapy sessions more effectively, and this part of the recovery process will just make sense to him.
We pray that we will remain calm, strong, and patient as we continue to heal our son.
Hoping to hear the insurance decision within the week to get him scheduled for his continued therapy.
Hunter walked in to the patient room, but hesitated at the door- "I don't want to get my blood drawn!" We reassured him that this was just a "talking" appointment, and he relaxed, holding Iggy on his lap. Peter put Iggy on the doctor's chair, and we had some giggles as we talked about what Iggy would do as a doctor. We told Hunter to leave him there until Dr. G walked in, and see if he would notice his blue bear sitting with his arms and legs folded on his roller chair.
After Dr. G walked in and shook our hands, Hunter stood next to the patient table with his finger in his mouth, and a big smile on his face. "Who is this?" Dr G asked, pointing to Iggy. Hunter giggled and proceeded to tell him all about Iggy. He bantered back and forth with Dr. G for multiple exchanges, and the surprise and happiness was evident on his face. He later told us that that was the most interaction he had with Hunter since beginning this process a year ago. Win!
We then began to recount our observations from the past three months. I had kept weekly notes in my planner, so we told him the good and the bad. We told him that after month two, we saw significant changes, and after month three we experienced a two-week regression. I provided him with handwriting samples that I took pre-IVIG, post month 1, 2, and 3. Fine motor skills are often affected with PANDAS, and with recovery, the changes in handwriting speak volumes. Compare his size and accuracy below. Win!
 |
| large letters. pressure decreased. |
He then wanted concrete data from our ABA therapists, so we gave him an 18 page document containing graphs that illustrated our progress over the past three months. He was ultimately impressed when we told him that he had gone from 25 hours/week of a full-time aide at school to 0 hours/week. Win!
He told us that he recommends continuing treatment, but of course, we have several options as parents.
1) Stop. See how long his progress maintains; could be a helpful diagnostic tool of how far apart the IVIG can be and stay consistent.
2) Decrease the frequency to every other month for the next six months. He said the standard system is to start with a consecutive dosing, and then space out the infusions. The minimal time for consecutive treatments is three months, with six months being the max.
3) Maintain the same monthly frequency for the next three months.
I asked him the big question on my mind- are we looking for continued improvement, or are we hoping to maintain our current level of functioning?
Dr. G always has good analogies to help us understand our options. He told us to think of it like a poker table- are you all in? He said that there are definitely gambles; if we space out the infusions and he regresses, then we need to look at the timing (but he didn't think we wouldn't be able to get back to the level we are currently). If he plateaus, then we also need to look at the timing and wonder if we pulled back too soon. If he continues to improve, then we know we hit the jackpot.
He told us to expect some regressions- with his autoimmune disorder, his opinion (and this is where he said we differ) is that the trigger doesn't matter- whether it is strep, or flu, etc, if his system is stressed, the symptoms will get worse. The immune system is susceptible to the environment. We are attempting to create a bigger threshold- as it was lowered due to his acute illness at the start, with autoimmune disease of the brain it doesn't take much to flip it over. We are trying to move that threshold back up so that it would take longer or a much bigger illness to cause regression.
We asked him at least 45 minutes worth of questions- the protein overload to the kidneys, the rash (wasn't completely convinced it was related to IVIG), MTHFR (has read many studies on the efficacy of 23 &Me and doesn't recommend relying on the test), his high strep titer from the last blood draw (he said we need to discount blood draws while he is undergoing IVIG- he would not treat unless his titer was four times the allowed amount (Hunter's was two times the amount), and three other important factors:
1) His Vitiligo- Dr. G immediately noticed it on his face, but it is getting warmer outside and his increased sun exposure (even with sunscreen) makes it more apparent. He was hoping the Vitiligo would stop progressing with the IVIG (even though there are no documented studies). Peter and I decided to measure the spot on his hip so we could determine if it was increasing or staying the same.
2) His MRI had a report that there was an increased T2 signal in the white matter- we read that increased white matter signal changes on the MRI may also be seen in patients who have infectious or inflammatory conditions. He said he sees that wording frequently on MRI interpretations and it wasn't a concern for him at this time.
3) His immune system with starting kindergarten in the fall. Does IVIG lower his immune system? It actually does the opposite. IVIG is given to immunodeficient children to improve their immune system, so they can fight off illnesses. He said to remember that we are all fighting many viruses every day. Hunter is receiving antibodies from adults (thank you blood donors!), so he should be even more protected. The IVIG augments the normal immune system; it doesn't suppress it.
After a weekend to think about our options, we have decided to request the next three consecutive months of IVIG. With Hunter starting school, we would rather have him miss the time during the summer vs. the school year. We think (and hope!) that we are just beginning to see the initial stages of recovery. We have seen many glimpses of Hunter pre-PANDAS/Autism and the improvements are both optimistic and exciting.
We are not ready to wean him off of the very procedure that has brought him back to us.
After three more infusions, we will reduce the frequency and hope that he will maintain as we continually drop to minimal medical intervention.
So now we pray.
We pray that insurance will agree with Dr G's recommendations and well-documented progress over the past three months.
We pray that the infusions will be well tolerated and Hunter will not have any adverse side effects.
We pray that he will continue to improve and his autoimmunity will be challenged.
We pray that we will build a bigger threshold to fight against the strep monster.
We pray that he will comprehend his therapy sessions more effectively, and this part of the recovery process will just make sense to him.
We pray that we will remain calm, strong, and patient as we continue to heal our son.
Hoping to hear the insurance decision within the week to get him scheduled for his continued therapy.
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