I DON't Know What To Do

[Tamistwins]

I just wanted to start off by saying how great this forum is to all of us parents struggling to find out how best to help our children! With that said, I am so confused. My 7 year old son has gotten worse after his first IVIG treatment. It has been 5 weeks and I only see that his symptoms have become worse. Before IVIG he has tried numerous antibiotics. Zithromax seems to be the drug of choice. Alot of his ocd traits seemed to have diminish while he was on the antibiotic. He still had certain things that did not go away but now it seems like all those things have returned after the IVIG. I don't know what to do anymore. What do you do if there was no improvement, and why hasn't there been an improvement, why has everything returned?? He also has ODD which makes it almost imposible for me to remain calm and not yell and scream. This is not the person I used to be before all of this took over our lives. I was so calm, patient, happy with my children and now I hate to open my eyes in the morning because the stress continues on. I was hoping the ODD would diminish after IVIG. My son used to be sooo sweet, kind, empathetic. Now instead he is a bully, looks for trouble, constantly hitting his sister and she constantly screams...by the way she has pandas too. So what do I do why am I not seeing improvement?? The Cunningham test showed he has high Pandas and he has classic symptoms.

 

On another note....I can't stand going to the pediatrician and them looking at me like I am nuts. Can anyone suggest a good pediatrician in NJ. Supposedly he believes in PANDAS but wont treat with antibiotics unless active infection. My 15 month old may or may not have pandas. I'm waiting for Cunningham results. But he has been very tense and pinching hard. Crying at night, strep test negative although he has contracted strep before he was a yr old. I had him at Dr. on friday. He has been running a high temperature since thursday. 4 days now and now he has a rash all over his body. VIRAL??? What if it isn't viral? How do I explain to them how important it is to treat with antibiotics??

 

Any help would be greatfully appreciated.

[Joan Pandas Mom]

I'm sorry you are going through this. I know what you mean when you open your eyes in the morning, it starts all over again. Dr. Nicolaides and Dr. Trifilliti are in NJ. They are two knowledgable PANDAS docs. I would try IVIG #2. We are going for it next week. It has been 4.5 months since first one and like you we saw little results for a short term. I'm trying this one and at least one more. I might look into PEX too? I don't know much about it since we decided to go the IVIG route. If you do do IVIG #2, have everyone tested for aso, anti-dnase and mycoplasma. I sent my son back to school after about 4 days. I wouldn't do that again.

[Tamistwins]

I'm sorry you are going through this. I know what you mean when you open your eyes in the morning, it starts all over again. Dr. Nicolaides and Dr. Trifilliti are in NJ. They are two knowledgable PANDAS docs. I would try IVIG #2. We are going for it next week. It has been 4.5 months since first one and like you we saw little results for a short term. I'm trying this one and at least one more. I might look into PEX too? I don't know much about it since we decided to go the IVIG route. If you do do IVIG #2, have everyone tested for aso, anti-dnase and mycoplasma. I sent my son back to school after about 4 days. I wouldn't do that again.

Hi Joan,

 

From what I understand they wont do a 2nd IVIG if there was no improvement at all..of course I could be wrong. I was told to have it done 2 months after the first if needed. So have you seen some long term results? How long did it take to see improvement? We see Dr. B in CT for the IVIG. But i also want a pediatrician who understands. Who do I turn to in time of need CT. is too far away and Dr. B isn't a pediatrician. My son had mycoplasma, strep and mono last school yr. He has continued to be on antibiotics before and after IVIG.

[KaraM]

HI Tami,

 

Have you called Dr. B. to ask his recommendation? We see him also. We have not had IVIG yet, but think I remember him describing to us that with IVIG he usually sees things go one of two ways. Either one is enough or, if there isn't much improvement a second is needed (maybe 4 weeks later???).

 

I know how you feel about wanting a sympathetic pediatrician, but maybe having Dr. N or Dr. T on your team in addition to Dr. B would make sense. Or how about calling them and asking if they know of any pediatricians in the area that have been cooperative/understanding with other patients of theirs who can supplement the care of Dr. B. My impression from others on this board is that Dr. T is just an incredibly kind and understanding human being. I don't get the impression there is competition for patients or anything like that. So maybe he'd be willing to give some names if he knows any...

 

Just some thoughts.

 

Good luck.

 

Kara

[nevergiveup]

My dd had a set back on first ivig. Because after 3 weeks the antibodies start to dwindle, and if you have a strong inflammatory response to the high dose like fever, head and neck pain, you have made pandas symptoms temporarily worse. My dd does much better when her ivigs are symptomless!! Autoimmune diseases need regular ivig if the disease is chronic. Have cunningham test done again at about 12 weeks post. If antibodies are higher then your child may need regular ivig because his body is in a chronic state. My doc says that unless the child is in a horrible attack, chorea etc.... Then high dose is required to stop the attack and help child. If child is in a pretty good state then slowly adjusting ivig over several months is safer so as not to cause a infammatory reaction which can exacerbate symptoms. Plus this allows the childs body to not have side effects. It can take 6 months to get the dose upb to the appropriate levels. Levels appropriate to manage autoimmune antibody diseases are when the child has igg levels 1700 to 2000 all the time. This then prevents the fluctuation of symptoms and Helps prevent relapse and of course bacterial infections. I would not give up on ivig, not yet, just get an immunologist that handles autoimmune diseases and is familiar with the ivig protocol.

[Fixit]

My dd had a set back on first ivig. Because after 3 weeks the antibodies start to dwindle, and if you have a strong inflammatory response to the high dose like fever, head and neck pain, you have made pandas symptoms temporarily worse. My dd does much better when her ivigs are symptomless!! Autoimmune diseases need regular ivig if the disease is chronic. Have cunningham test done again at about 12 weeks post. If antibodies are higher then your child may need regular ivig because his body is in a chronic state. My doc says that unless the child is in a horrible attack, chorea etc.... Then high dose is required to stop the attack and help child. If child is in a pretty good state then slowly adjusting ivig over several months is safer so as not to cause a infammatory reaction which can exacerbate symptoms. Plus this allows the childs body to not have side effects. It can take 6 months to get the dose upb to the appropriate levels. Levels appropriate to manage autoimmune antibody diseases are when the child has igg levels 1700 to 2000 all the time. This then prevents the fluctuation of symptoms and Helps prevent relapse and of course bacterial infections. I would not give up on ivig, not yet, just get an immunologist that handles autoimmune diseases and is familiar with the ivig protocol.

 

thanks for posting this....

its' contra to hd theory...but we are still learning...and again not one size fits all...

it

[Mary M]

Our dd12 had high dose IVIg (1.5mg/kg) over 2 days in mid-June. We can empathize with your worries, fears and basic condition of household function or dysfunction as is the case for those of us living with PANDAS. Our dd's sleeping and eating issues were the only symptoms that had near instantaneous improvement post IVIg. All other symptoms increased after the IVIg and we did not see improvement until after week 5. From that point through now she has had steady and continuous improvement across the board. We have had a few "dips" (all associated with someone in the house having a cold) but the depths have not been as deep as during exacerbations of the past. Yesterday was challenging but she had not taken her 500mg abx. Is your child still taking a prophylactic dose of abx? The daily 500mg dose of abx for our dd is the glue that holds her together. As she moves past the 24 hr mark she gets progressively more symptomatic until she takes the abx. Please know we are all here for you...yes, this life is hard, on all of us...our PANDAS child, our other children, our spouse/partner, ourselves...

[nevergiveup]

No its not contra to high dose theory. It is a VERY high dose. Think about it one gram to one point tWo five grams every 21 days, that's 75 percent more than Dr B gives. A heck of a lot more than Dr K. If one ivig redirects autoantibodies, and they come back then many high doses maintains immune system so autoantibodies do not attack. If your body stops producing antibodies, ALL the time, becuz, you always have donor antibodies then how is this contra to high dose. This is high dose at its best. Its contra becuz, one insurance coverage or cost prohibited. But it is the autoimmune protocol seen to help lupus, ms, adem, autism, and PANDAS. I know three leading immunologists in major research centers whom have panda kids on this and they say "IT HELPS".

[Fixit]

No its not contra to high dose theory. It is a VERY high dose. Think about it one gram to one point tWo five grams every 21 days, that's 75 percent more than Dr B gives. A heck of a lot more than Dr K. If one ivig redirects autoantibodies, and they come back then many high doses maintains immune system so autoantibodies do not attack. If your body stops producing antibodies, ALL the time, becuz, you always have donor antibodies then how is this contra to high dose. This is high dose at its best. Its contra becuz, one insurance coverage or cost prohibited. But it is the autoimmune protocol seen to help lupus, ms, adem, autism, and PANDAS. I know three leading immunologists in major research centers whom have panda kids on this and they say "IT HELPS".

 

that's interesting...

so over the course of time it's higher..

what happens at the end of 6 months....wait six months, assuming there will some ebb and flow(sawtooth) or is that not expected?

i'm sorry, i don't remember if you said they check levels at least monthly after..i assume..

and maybe this will be the right way...i like the idea that if it didn't work at first, they kick you out the door and assume they can't help you...good luck

 

do you know if the highlighted segment was discussed at the conference?

 

but i don't want to see any protocal eliminated...i think pandas is more like baking than cooking...

cooking, you can throw stuff together and as long as it's not under cooked, or burn it, anything in the middle will probably work or be ok..

baking is more of a science..so much yeast..not too much salt..let it rise..punch it down..wait an hour...4hrs is too long, let it rise again..etc..

and with every kid it will be just a littl different...

that's why i think its good we discuss all protocols....i hope they keep them all on the table!!

maybe in 20 years they'll have a beetter idea of who will need 1 or 2 or monthly or pex or all..or annually..

not that anything i'm saying matters...just rambling

[nevergiveup]

No pandas protocol has been "proven" Swedo did an initial study looking at ivig with a one time dose. They saw an 80 percent improvement for severe cases. We will have to wait a very long time to see this theory proven, however, immunologists around the country know that for autoimmune disease this protocol "seems" to be helpful. A one time dose of ivig is not the standard treatment for autoimmune disease. For the younger children it may get rid of the autoantibodies, but for the older kids with chronic autoantibodies, then this protocol seems best to look at. I believe swedo is using children under 12 for the study, why becuz the most success is seen in the younger kids. Older kids tend to relapse, so a different protocol will need to be investigated, and from what I have seen this protocol seems the best way to start. Its not unproven, it works for multiple autoimmune conditions. What I find interesting is that for many autoimmune conditions that are now being studied with high dose ivig, none saw improvement with short term low dose ivig. And many saw improvement with one high dose, but the disease later relapsed. I guess the big question is should you wait till the child is in crisis and then dose them with high dose one time ivig, and then wait again until crisis. I have found waiting until my child is in crisis, even with ivig we have a long healing process. (4 to 6 months) and then with additional infection she relapsed again three times over the last 4 years. Leaving her limited time to enjoy life. Her symptoms always came on overnight and lasted a long time........ Each attack seemed to be setting her back more. I know of eight children on this protocol, one from the original swedo study from 2002. Dr. K's protocol was not proven either but he saw results so mothers on this forum started communicating his successes. Except he has much less success with his older children. I am letting everyone know there is another protocol, for older children that is seeing results. Dr B's protocol is like half Dr. K's and half this protocol. Not proven either but "helpful" I wish he would look at troughs and match them to symptom resolution because many physicians I have spoken with think this is key. He has a lot more patients than most docs, and he is doing ivig. So any Dr. B patients want to discuss this, I would like to.

No its not contra to high dose theory. It is a VERY high dose. Think about it one gram to one point tWo five grams every 21 days, that's 75 percent more than Dr B gives. A heck of a lot more than Dr K. If one ivig redirects autoantibodies, and they come back then many high doses maintains immune system so autoantibodies do not attack. If your body stops producing antibodies, ALL the time, becuz, you always have donor antibodies then how is this contra to high dose. This is high dose at its best. Its contra becuz, one insurance coverage or cost prohibited. But it is the autoimmune protocol seen to help lupus, ms, adem, autism, and PANDAS. I know three leading immunologists in major research centers whom have panda kids on this and they say "IT HELPS".

 

that's interesting...

so over the course of time it's higher..

what happens at the end of 6 months....wait six months, assuming there will some ebb and flow(sawtooth) or is that not expected?

i'm sorry, i don't remember if you said they check levels at least monthly after..i assume..

and maybe this will be the right way...i like the idea that if it didn't work at first, they kick you out the door and assume they can't help you...good luck

 

do you know if the highlighted segment was discussed at the conference?

 

but i don't want to see any protocal eliminated...i think pandas is more like baking than cooking...

cooking, you can throw stuff together and as long as it's not under cooked, or burn it, anything in the middle will probably work or be ok..

baking is more of a science..so much yeast..not too much salt..let it rise..punch it down..wait an hour...4hrs is too long, let it rise again..etc..

and with every kid it will be just a littl different...

that's why i think its good we discuss all protocols....i hope they keep them all on the table!!

maybe in 20 years they'll have a beetter idea of who will need 1 or 2 or monthly or pex or all..or annually..

not that anything i'm saying matters...just rambling

[Fixit]

No pandas protocol has been "proven" Swedo did an initial study looking at ivig with a one time dose. They saw an 80 percent improvement for severe cases. We will have to wait a very long time to see this theory proven, however, immunologists around the country know that for autoimmune disease this protocol "seems" to be helpful. A one time dose of ivig is not the standard treatment for autoimmune disease. For the younger children it may get rid of the autoantibodies, but for the older kids with chronic autoantibodies, then this protocol seems best to look at. I believe swedo is using children under 12 for the study, why becuz the most success is seen in the younger kids. Older kids tend to relapse, so a different protocol will need to be investigated, and from what I have seen this protocol seems the best way to start. Its not unproven, it works for multiple autoimmune conditions. What I find interesting is that for many autoimmune conditions that are now being studied with high dose ivig, none saw improvement with short term low dose ivig. And many saw improvement with one high dose, but the disease later relapsed. I guess the big question is should you wait till the child is in crisis and then dose them with high dose one time ivig, and then wait again until crisis. I have found waiting until my child is in crisis, even with ivig we have a long healing process. (4 to 6 months) and then with additional infection she relapsed again three times over the last 4 years. Leaving her limited time to enjoy life. Her symptoms always came on overnight and lasted a long time........ Each attack seemed to be setting her back more. I know of eight children on this protocol, one from the original swedo study from 2002. Dr. K's protocol was not proven either but he saw results so mothers on this forum started communicating his successes. Except he has much less success with his older children. I am letting everyone know there is another protocol, for older children that is seeing results. Dr B's protocol is like half Dr. K's and half this protocol. Not proven either but "helpful" I wish he would look at troughs and match them to symptom resolution because many physicians I have spoken with think this is key. He has a lot more patients than most docs, and he is doing ivig. So any Dr. B patients want to discuss this, I would like to.

 

in bold.....

this is my son 3-5 mininal 5-9 a bit worse..9 he## broke loose

and i have the exact same question..

we are doing ...so do i treat him now anyway(not 100%)....or do i wait till relapse///

this is the huge question???????

he is 10 1/2+...right in the crux..teeder point..i feel the pressure to decide...

but from all i read..pit/pans has not gotten down the science yet for ivig..

maybe your way is the answer...

it seems to me 1 ivig is not been the answer...that is the exception....

i am terrified of making things worse...i don't think I can make it

i can only help others hold on now a little....as we are ok right now

 

i don't really understand troughs..and as far as i can tell ds is not immune defiecent..he did fail his serio types twice....i don't know if that counts....

Edited October 4, 2010 by Fixit

[nevergiveup]

Serio types twice??? I can tell you first ivig was tough,(asceptic meningitis) second was so low a dose it did nothing. Third we started seeing improvement, more and more as we slowly up the dose. (Its been a year). Listen ivig definately helps, I would recommend it to all, so would my dd but you need to tough it out for sure, its not easy. As I am saying this, my dd is complaining of neck pain, she had her ivig today again! Second one this week, since she had a fever spike on her one a week ago and we had to stop infusion.

[Healingthedude]

I just wanted to start off by saying how great this forum is to all of us parents struggling to find out how best to help our children! With that said, I am so confused. My 7 year old son has gotten worse after his first IVIG treatment. It has been 5 weeks and I only see that his symptoms have become worse. Before IVIG he has tried numerous antibiotics. Zithromax seems to be the drug of choice. Alot of his ocd traits seemed to have diminish while he was on the antibiotic. He still had certain things that did not go away but now it seems like all those things have returned after the IVIG. I don't know what to do anymore. What do you do if there was no improvement, and why hasn't there been an improvement, why has everything returned?? He also has ODD which makes it almost imposible for me to remain calm and not yell and scream. This is not the person I used to be before all of this took over our lives. I was so calm, patient, happy with my children and now I hate to open my eyes in the morning because the stress continues on. I was hoping the ODD would diminish after IVIG. My son used to be sooo sweet, kind, empathetic. Now instead he is a bully, looks for trouble, constantly hitting his sister and she constantly screams...by the way she has pandas too. So what do I do why am I not seeing improvement?? The Cunningham test showed he has high Pandas and he has classic symptoms.

 

On another note....I can't stand going to the pediatrician and them looking at me like I am nuts. Can anyone suggest a good pediatrician in NJ. Supposedly he believes in PANDAS but wont treat with antibiotics unless active infection. My 15 month old may or may not have pandas. I'm waiting for Cunningham results. But he has been very tense and pinching hard. Crying at night, strep test negative although he has contracted strep before he was a yr old. I had him at Dr. on friday. He has been running a high temperature since thursday. 4 days now and now he has a rash all over his body. VIRAL??? What if it isn't viral? How do I explain to them how important it is to treat with antibiotics??

 

Any help would be greatfully appreciated.

 

 

We love our pediatrician Dr Rosen@the Whole Child Center in Oradell NJ. He is totally understanding and a very good Doctor.

Don't know what part of the state you live in, but he is great.

[Tamistwins]

HI Tami,

 

Have you called Dr. B. to ask his recommendation? We see him also. We have not had IVIG yet, but think I remember him describing to us that with IVIG he usually sees things go one of two ways. Either one is enough or, if there isn't much improvement a second is needed (maybe 4 weeks later???).

 

I know how you feel about wanting a sympathetic pediatrician, but maybe having Dr. N or Dr. T on your team in addition to Dr. B would make sense. Or how about calling them and asking if they know of any pediatricians in the area that have been cooperative/understanding with other patients of theirs who can supplement the care of Dr. B. My impression from others on this board is that Dr. T is just an incredibly kind and understanding human being. I don't get the impression there is competition for patients or anything like that. So maybe he'd be willing to give some names if he knows any...

 

Just some thoughts.

 

Good luck.

 

Kara

Hi Kara,

Thank you ! I actually saw Dr. T before we went to DR. B for the IVIG.

[Tamistwins]

My dd had a set back on first ivig. Because after 3 weeks the antibodies start to dwindle, and if you have a strong inflammatory response to the high dose like fever, head and neck pain, you have made pandas symptoms temporarily worse. My dd does much better when her ivigs are symptomless!! Autoimmune diseases need regular ivig if the disease is chronic. Have cunningham test done again at about 12 weeks post. If antibodies are higher then your child may need regular ivig because his body is in a chronic state. My doc says that unless the child is in a horrible attack, chorea etc.... Then high dose is required to stop the attack and help child. If child is in a pretty good state then slowly adjusting ivig over several months is safer so as not to cause a infammatory reaction which can exacerbate symptoms. Plus this allows the childs body to not have side effects. It can take 6 months to get the dose upb to the appropriate levels. Levels appropriate to manage autoimmune antibody diseases are when the child has igg levels 1700 to 2000 all the time. This then prevents the fluctuation of symptoms and Helps prevent relapse and of course bacterial infections. I would not give up on ivig, not yet, just get an immunologist that handles autoimmune diseases and is familiar with the ivig protocol.

Hi nevergiveup,

 

We do see Dr. B who is an allergist/immunologist. My son didn't seem to get sick from the IVIG because we pretreated with benadryl and motrin. He is however chronic, we don't seem to have these exacerbations that people speak of. It's an everyday battle. He has an immunodeficiancy but I wasn't told he would need ongoing IVIG. I would hope not since we had to pay out of pocket!