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IVIG for young kids


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Hi everyone,

 

Haven't been on the forum in awhile. But still (1 1/2 years later!) fighting this for our DS5. Dx PANDAS and Lyme. The Lyme seems to be

clearing but the PANDAS symptoms remain. Many are gone...but OCD, some tics, ADHD, anxiety/fear are still there.

 

IVIG has been recommended...Based not on the severity of the symptoms but on the length of treatment. Our dr. said that his concern is

that the symtoms can (not always) get worse. If it's not dealt with now, a few years from now we could be looking at OCD that is more severe, along

with other symptoms. And that's even more challenging to fix.

 

Has anyone done IVIG with a young child? what was your success? lots of side effects?

 

Thanks once again..to everyone for your guidance!

 

darlene

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Hi!

My son had ivig one year ago when he just turned 8. He wasnt as young as your son, so not sure about that. Maybe some others will post. He is doing fantastic now. Very few pandas symptoms and only after illness. He did experience headaches and nausea for days following treatment. Nothing severe.

Good luck!

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Hi Darlene-

My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

 

In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

 

Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

 

This is my first post here (although I have been reading for a long time) so I will give you more info/background:

This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

 

He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

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Hi!

My son had ivig one year ago when he just turned 8. He wasnt as young as your son, so not sure about that. Maybe some others will post. He is doing fantastic now. Very few pandas symptoms and only after illness. He did experience headaches and nausea for days following treatment. Nothing severe.

Good luck!

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Were his symptoms prior to IVIG real disabling? Or did the antibiotic treatment just not work? I've been told by Dr. B to look

not at the severity of symptoms for determining the use of IVIG but on the length of antibiotic treatment and its effectiveness.

 

thanks for responding!

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hi Darlene,

so sorry to still see you are suffering with this! I'm curious who you are seeing now, specifically is it your lyme doc who is suggesting ivig?

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Hi Laure,

 

Thanks. still at it! not as severe symptoms but just can't get the 100% mark. Lyme doc agrees but pandas doc suggesting. We're doing 1 more shot at Azith.

and Augmentin to see if it helps but then we need to start discussing IVIG seriously. Lyme seems to be cleared out. But autoimmune stuff still remains.

where are you guys at? how's sophie?

 

darlene

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Hi Darlene-

My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

 

In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

 

Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

 

This is my first post here (although I have been reading for a long time) so I will give you more info/background:

This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

 

He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

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Hi Darlene-

My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

 

In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

 

Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

 

This is my first post here (although I have been reading for a long time) so I will give you more info/background:

This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

 

He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

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Hi Darlene-

My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

 

In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

 

Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

 

This is my first post here (although I have been reading for a long time) so I will give you more info/background:

This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

 

He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

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Hi Darlene-

My son is 5 and he just finished his 6th IVIG yesterday. Prior to this infusion was the longest the results had lasted. Previously by day 20 the benefits had faded and we had seen a return of symptoms. I would do it all again it has been that beneficial. The IVIG process itself is relatively benign and boring. It honestly seems scarier than it is. I know everyone has their perspective on this and most feel IVIG is big gun therapy. Personally, I would rather do IVIG than use psych meds or even steroids (not that I am against using either as indicated). I was worried the first time but now it is normal. This time my son didn't cry or scream when they put the line in (he has had a lot of blood draws and bad ones at that). We just bring new toys and books and play and hang out for one or two days. For the first infusions, he was just so sick he didn't want to do much more than watch movies or play video games. Each round we had to bring more and more things to keep him busy and entertained. Each kid is different and we had a long history before this so my son needed more infusions to get to baseline. He is still not 100% but very close. I hope he is after this infusion. We do not have any more scheduled but would do more if needed. Maybe because we do this alongside cancer patients who are babies on up I don't see age as a limiting factor other than I do agree the earlier the better chance they have to have a normal development. I have been told by every Dr. we have seen that the longer the behavior goes on, the more entrenched it becomes and the harder to eliminate regardless of medical intervention.

 

In the night after the first day of his two day IVIG he had a really bad headache and vomiting (we didn't know to keep up the ibuprofen or benadryl). He did run a fever the second day of his IVIG (only time). We now pre-medicate with ibuprofen, benadryl and zofran each day of an infusion. We also do ibuprofen and zofran around the clock between days of two day infusions and for 72 hours after. He doesn't need zofran after that but will need ibuprofen during the daytime for up to two weeks. He doesn't vomit anymore, but will get occasional headaches even with ibuprofen.

 

Each infusion brings new and longer lasting improvements. There are also times when "it gets worse before it gets better" and we administer ibuprofen and this helps. This worsening of symptoms has gotten less and less, until after the 5th infusion we saw just a few days of a vocal tic on awakening that went away and two daytime urinary accidents. This is the closest to baseline he has been since June of 2010. He is on penicillin vk 250mg twice a day. He was not on prophylactic antibiotics until after the 1st IVIG so I would recommend that for sure!

 

This is my first post here (although I have been reading for a long time) so I will give you more info/background:

This is not our first rodeo. My son has an ASD diagnosis but has never really fit there as far as we were concerned. We have been treating him with supplements, etc. since he was 20 months old. My only regret in all of these years was not going to the big gun therapies first. He has always been a great responder but eventually we always end up doing things I would have called crazier in the early days. PANDAS/Sydenham's was not even on our radar until June of 2010 when he regressed over the course of a week when he ended up having a seizure. He was doing so well we knew he would lose his ASD diagnosis one day. He then had an MRI, 24 hour EEG, spinal tap, bloodwork for everything under the sun (including anti-NMDA encephalitis and cerebral folate deficiency). We knew he had a pre-existing mitochondrial dysfunction but it is still not clear how much that plays into predisposition for PANDAS. He has a sydenham's chorea diagnosis by his treating physician and a PANDAS diagnosis by his biomed doc. The only thing that came up positive in all of this was his throat culture. ASO titers didn't rise until after IVIG. He also has a decreasing TSH with normal T3 and T levels with a thyroid scan Monday. Positive anti-thyroid antibodies after IVIGs started. Can't track co-infections like lyme or mycoplasma since didn't test before IVIGs. He has had pneumonia before.

 

He also had a T & A between the 4th and 5th IVIGs. We have gone from him not sleeping alone or leaving the house, being taken out of preschool, hand movements and finger twiddling with arm fixation, one seizure, vocalizations replacing all language, huge developmental regression with loss of 2-3 years of skills over a week, extreme emotional liability, violent outbursts, separation anxiety, extreme sleep disruption, slower processing time to going on family outings again and better eating, emotionally regulated, attention back to normal, sleeping in own bed, just our son being returned to us.

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What's the dosages for IVIG? high dose or medium or low dosage? We are planning to do IVIG too. But two doctors have different suggestion: high dose or medume dose.Whatis your son's experience? Thanks. Any suggestions will be highly appreciated. Yanni

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What's the dosages for IVIG? high dose or medium or low dosage? We are planning to do IVIG too. But two doctors have different suggestion: high dose or medume dose.Whatis your son's experience? Thanks. Any suggestions will be highly appreciated. Yanni

 

 

We didn't get that far into the discussion about dosage. But the doc was calculating the cost of IVIG based on my son's weight and amount that would be needed.

Maybe others here have dealt with dosage levels.

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