8 weeks since IVIG

[kimballot]

I posted previously about the first 4 weeks after IVIG. At the time of my last post (week 4), my son was having some issues with depression that resembled a nasty exacerbation he had 7 years ago when he was in first grade - just before we had his tonsils removed. Well, things went from bad to worse over the next 3 weeks. Here's the update:

 

Week 5

DS had some sneezing and stuffiness. I took him to the pediatrician (PANDAS friendly) and he thought it was "just" a virus. Interestingly, it did seem to run a normal course and did not turn into sinusitis (which is rare!). However, behaviors continued to deteriorate, with frequent rages, opposition, defiance, swearing, school refusal, and attempts to run away from home. This all culminated with an early-morning rage one day and bolting out the door while I was on the phone with crisis services. He ran to school to find the school social worker (which is good), but was completely in a fight-or-flight response when he got there. Crisis services came out to evaluate and we decided to bring him to the hospital. He was hospitalized in the adolescent psychiatry unit for 9 days, while the psychiatrist learned about PANDAS, spoke to all the other docs involved, and while insurance decided if he should stay in that particular unit or be transferred to an "in network" hospital. (As it turned out, the "in network" hospital refused him because they said PANDAS was a medical complication that they could not manage — Once they refused him, insurance paid 100% for the out of network hospital, which worked out well for us).

 

 

Week 6 - as DS prepared to come home, I insisted on getting help via as much counseling/ parent training as I could find. My son has never been a defiant and delinquent child, and I needed a whole new set of skills to deal with this. I think this is the silver lining in all of this- I was able to get counseling services for my son AND I was able to get him started in a county-sponsored wraparound program. I don't know if any of you have a wraparound program in your area, but if you do and if your child is a teenager who is having behavior problems... I suggest you look into the program. We have a wraparound social worker who will help us steer the ship and develop behavioral plans for my son and goals for our family (after 14 years of PANDAS, our family could use all the help it can get). We have a parent advocate, who will help me stay sane and listen to my fears and questions... and has been through the mental health system herself. In the near future we will have skillbuilders who will help my son to get back into meaningful activities (he rejected all of his healthy friends and healthy activities starting week 2 after IVIG), and we will have respite for a few hours a week. Also, the wraparound program works with both the family and the school. It is a great program.... and so far everyone I have met has been very open and understanding about PANDAS. the only problem is that it takes a couple of weeks to get evaluated and started, and that was a problem for us.

 

Week 7 - DS was home for nearly 2 very difficult weeks. During that time he asked several times to go back to the hospital. We had removed his electronic privileges (as they were a source of obsession for him), and he had no interest in healthy activities to substitute. School was difficult as he had displayed concerning behavior and the school feared he might try to leave the building, so they assigned an escort to walk him from class to class. DS was very upset by this and refused to go to classes, ending up in in-school suspension. One day he said "enough" - got off the school bus, walked in the front door of the school and out the back door - off to do who knows what for the day. Luckily a teacher saw him and some friends caught wind of it and the school called the police within 15 minutes. One hour and 6 police cars later... DS was returned to our home. For the rest of that week the acting out continued and he ended up back in the psychiatric unit for 5 days.

 

Week 8 - DS was discharged back home. I don't know how to explain it, but he is calmer now. I don't know if it is healing from the IVIG or if he realizes that we are going to keep him safe no matter what we have to do and no matter how confusing his mind is. He went to school today and had a "normal day" - hung out with a friend and did homework after dinner... went to bed with no rages. It was wonderful. I am hoping we are on our way back.

 

DS is scheduled for another IVIG and also with an appointment with a lyme doctor. I want to do IVIG because his sinuses REALLY have been clear since IVIG and he is immune deficient - I do not want to risk another sinus infection and a return to antibodies attacking the brain. I do not know why we have seen the symptoms we have seen. I can only think that having antibodies dance around your basal ganglia producing unusual levels of dopamine for 14 years would make it very difficult to NOT react once those antibodies die off. I want him to see a lyme doctor because his Igenex test (pre-IVIG) had a couple of indeterminate bands and I want to see if we should be doing some cyst-bustig drugs or other provocation meds to see if there is lyme hiding in there.

 

I want to thank anyone and everyone who has prayed for us and for all the PANDAS kids. We are truly a unique breed. I also want to thank everyone who has been brave enough to share their stories with me over the past year as I have read everything I could on this forum. I was so prepared for this crisis. So much more than I could EVER have been without all of you. I knew I was not the first PANDAS mom to deal with these things.. and that gave me so much strength and comfort.

 

Thank you all - and blessings to all of our families.

 

EDIT: I posted a 3 month update here http://www.latitudes.org/forums/index.php?showtopic=13604&st=0&p=112576&fromsearch=1entry112576

Edited June 18, 2011 by kimballot

[KeithandElizabeth]

I just wanted to let you know that I hope your son (and whole family) continues to see an upward trend now. The weeks post IVIG for some families can be really rough. Have you tried any of the detox remedies? During one particularly bad post IVIG moment, we gave our son both high quantities of charcoal pills and bentonite clay at the same time and we definitely saw some relief!

 

Elizabeth

[kimballot]

I just wanted to let you know that I hope your son (and whole family) continues to see an upward trend now. The weeks post IVIG for some families can be really rough. Have you tried any of the detox remedies? During one particularly bad post IVIG moment, we gave our son both high quantities of charcoal pills and bentonite clay at the same time and we definitely saw some relief!

 

Elizabeth

Thanks for the reminder. I was doing charcoal before the first admission, but the hospital did not continue any supplements. I should pull those out again!

 

Did you do IVIG more than once?

Edited April 15, 2011 by kimballot

[Iowadawn]

I posted previously about the first 4 weeks after IVIG. At the time of my last post (week 4), my son was having some issues with depression that resembled a nasty exacerbation he had 7 years ago when he was in first grade - just before we had his tonsils removed. Well, things went from bad to worse over the next 3 weeks. Here's the update:

 

Week 5

DS had some sneezing and stuffiness. I took him to the pediatrician (PANDAS friendly) and he thought it was "just" a virus. Interestingly, it did seem to run a normal course and did not turn into sinusitis (which is rare!). However, behaviors continued to deteriorate, with frequent rages, opposition, defiance, swearing, school refusal, and attempts to run away from home. This all culminated with an early-morning rage one day and bolting out the door while I was on the phone with crisis services. He ran to school to find the school social worker (which is good), but was completely in a fight-or-flight response when he got there. Crisis services came out to evaluate and we decided to bring him to the hospital. He was hospitalized in the adolescent psychiatry unit for 9 days, while the psychiatrist learned about PANDAS, spoke to all the other docs involved, and while insurance decided if he should stay in that particular unit or be transferred to an "in network" hospital. (As it turned out, the "in network" hospital refused him because they said PANDAS was a medical complication that they could not manage — Once they refused him, insurance paid 100% for the out of network hospital, which worked out well for us).

 

 

Week 6 - as DS prepared to come home, I insisted on getting help via as much counseling/ parent training as I could find. My son has never been a defiant and delinquent child, and I needed a whole new set of skills to deal with this. I think this is the silver lining in all of this- I was able to get counseling services for my son AND I was able to get him started in a county-sponsored wraparound program. I don't know if any of you have a wraparound program in your area, but if you do and if your child is a teenager who is having behavior problems... I suggest you look into the program. We have a wraparound social worker who will help us steer the ship and develop behavioral plans for my son and goals for our family (after 14 years of PANDAS, our family could use all the help it can get). We have a parent advocate, who will help me stay sane and listen to my fears and questions... and has been through the mental health system herself. In the near future we will have skillbuilders who will help my son to get back into meaningful activities (he rejected all of his healthy friends and healthy activities starting week 2 after IVIG), and we will have respite for a few hours a week. Also, the wraparound program works with both the family and the school. It is a great program.... and so far everyone I have met has been very open and understanding about PANDAS. the only problem is that it takes a couple of weeks to get evaluated and started, and that was a problem for us.

 

Week 7 - DS was home for nearly 2 very difficult weeks. During that time he asked several times to go back to the hospital. We had removed his electronic privileges (as they were a source of obsession for him), and he had no interest in healthy activities to substitute. School was difficult as he had displayed concerning behavior and the school feared he might try to leave the building, so they assigned an escort to walk him from class to class. DS was very upset by this and refused to go to classes, ending up in in-school suspension. One day he said "enough" - got off the school bus, walked in the front door of the school and out the back door - off to do who knows what for the day. Luckily a teacher saw him and some friends caught wind of it and the school called the police within 15 minutes. One hour and 6 police cars later... DS was returned to our home. For the rest of that week the acting out continued and he ended up back in the psychiatric unit for 5 days.

 

Week 8 - DS was discharged back home. I don't know how to explain it, but he is calmer now. I don't know if it is healing from the IVIG or if he realizes that we are going to keep him safe no matter what we have to do and no matter how confusing his mind is. He went to school today and had a "normal day" - hung out with a friend and did homework after dinner... went to bed with no rages. It was wonderful. I am hoping we are on our way back.

 

DS is scheduled for another IVIG and also with an appointment with a lyme doctor. I want to do IVIG because his sinuses REALLY have been clear since IVIG and he is immune deficient - I do not want to risk another sinus infection and a return to antibodies attacking the brain. I do not know why we have seen the symptoms we have seen. I can only think that having antibodies dance around your basal ganglia producing unusual levels of dopamine for 14 years would make it very difficult to NOT react once those antibodies die off. I want him to see a lyme doctor because his Igenex test (pre-IVIG) had a couple of indeterminate bands and I want to see if we should be doing some cyst-bustig drugs or other provocation meds to see if there is lyme hiding in there.

 

I want to thank anyone and everyone who has prayed for us and for all the PANDAS kids. We are truly a unique breed. I also want to thank everyone who has been brave enough to share their stories with me over the past year as I have read everything I could on this forum. I was so prepared for this crisis. So much more than I could EVER have been without all of you. I knew I was not the first PANDAS mom to deal with these things.. and that gave me so much strength and comfort.

 

Thank you all - and blessings to all of our families.

 

I just want to write and say you are not alone with the whole police/psychiatric in-patient/school issues. Ohhhh...can I offer empathy...many times over! Our son is 12.

 

What state are you in?? The wraparound program sounds awesome. Iowa is no.48 in the nation for number of psychiatrists per capita, so the number of child psychiatrists is even worse!! Recently, Our son had to be sent by ambulance to a hospital halfway across the state because that was the closest available bed. He came back two days later when a bed became available where he always goes and his doc can treat him. There is no coordination of care to this extent here. We are veryyy fortunate to have the doc we have that is able to treat the PANDAS/lyme symptoms as he gets treated for these by a LLMD. PM me any time. Dawn

[kimballot]

 

What state are you in?? The wraparound program sounds awesome. Iowa is no.48 in the nation for number of psychiatrists per capita, so the number of child psychiatrists is even worse!! Recently, Our son had to be sent by ambulance to a hospital halfway across the state because that was the closest available bed. He came back two days later when a bed became available where he always goes and his doc can treat him. There is no coordination of care to this extent here. We are veryyy fortunate to have the doc we have that is able to treat the PANDAS/lyme symptoms as he gets treated for these by a LLMD. PM me any time. Dawn

 

Hi - Wraparound is a national initiative. Here is the website http://www.nwi.pdx.edu/index.shtml

The "users guide" under publications is very good and would be helpful to people who are not involved in wraparound as well. It is family-driven, so they have been very respectful of our choices for PANDAS treatment. My state is not listed on this website, so I suspect many states are adopting this model but may not be listed. To be honest with you, I feel like this is a well-kept secret. I only found out about it from our private neuropsychologist... then I asked about it at the psychiatric hospital. I don't think they would have offered it to us without my asking. I am so glad I asked. I think you would need to call your local (county or state) mental health office to learn more.

Edited April 15, 2011 by kimballot

[SSS]

Sending prayers out to you and your family- you have been through a lot ((hugs))

I also found the 3 weeks after our first HD-IVIG to be scary- but slowly things started to settle, then we had strep exposure. Just finished a 2nd IVIG, I think this lower dose (1.4) is making it easier, and perhaps the help of already having done an IVIG 7 weeks ago...recovery so far is so much better.

Hang in there----

[KeithandElizabeth]

Yes, we did 1 HD IVIG followed by 5 small dose IVIG's and then by one more HD IVIG. Our last IVIG was in February of 2010.

 

Elizabeth

[Stephanie2]

I don't know where i have been kimballot (I took a few weeks off the board there for awhile), but I didn't know and I am sorry you are going through this. I will pray for your son.

[LNN]

I just wanted to let you know that I hope your son (and whole family) continues to see an upward trend now. The weeks post IVIG for some families can be really rough. Have you tried any of the detox remedies? During one particularly bad post IVIG moment, we gave our son both high quantities of charcoal pills and bentonite clay at the same time and we definitely saw some relief!

 

Elizabeth

Thanks for the reminder. I was doing charcoal before the first admission, but the hospital did not continue any supplements. I should pull those out again!

 

I'm so so sorry you've been dealing with all of this. I can't imagine the h$@#. A few other detox ideas - alpha lipoic acid (empty stomach in a.m. for best absorption) is an anti-oxidant and helps brain chemistry. Milk thistle http://books.google.com/books?id=J4TFtQeHkQAC&printsec=frontcover&dq=lyme&hl=en&ei=2KKoTczQNsrz0gGvzJz5CA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDoQ6AEwAA#v=onepage&q=milk%20thistle&f=false is a good liver detox (to help mitigate advil/motrin use) and has really helped with mood/rage/idea fixation for my DS during lyme "herxing" (do not use milk thistle if allergic to ragweed). For charcoal, you need more than a pill or two. Dr Sears advocates 10 grams/day, which is a lot of pills. So we try to do about 4-5 capsules when we use it - 2 hrs away from abx.

 

Because of my DS's chronic infection issues, I've come to view his 10 weeks post-IVIG as a long, unmanaged herx. If you're approaching another IVIG, you might read up on detox, as it could make the next round easier, maybe even regardless of whether you're dealing with lyme. The lyme forum has a few discussions. You might also try www.lymenet.org and ask for detox ideas. Some of the ideas I've read there apply to adults so I didn't pay attention to those, but might be helpful for your DS.

 

Your family is in my thoughts and prayers.

Edited April 15, 2011 by LLM