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Hi everyone-

 

We just finished ivig with dr k last Friday.

My son had the massive headache at midnight that evening and vomitted twice.

Does anyone know where these side effects actually come from?

 

He was a trooper. The headache was a doozy though. I felt really bad as the prednisone didn't take it all away. He squirmed all night and the next day felt bad as well. Then out of nowhere he stood up and said "hey my headache is gone."

The ivig follow up sheet said that the headache could disappear spontaneously and it did! Anyone know why these nasty side effects happen and/or what they are from?

 

Thanks

johnsmom

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Hi everyone-

 

We just finished ivig with dr k last Friday.

My son had the massive headache at midnight that evening and vomitted twice.

Does anyone know where these side effects actually come from?

 

He was a trooper. The headache was a doozy though. I felt really bad as the prednisone didn't take it all away. He squirmed all night and the next day felt bad as well. Then out of nowhere he stood up and said "hey my headache is gone."

The ivig follow up sheet said that the headache could disappear spontaneously and it did! Anyone know why these nasty side effects happen and/or what they are from?

 

Thanks

johnsmom

I read not having enough fluids/water in your system causes the side effects. Its almost like dehydration. How is your son doing now? I think we are having IVIG mid July. Did your insurance cover?

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Linda- Is this the key line from that article?

 

Infused immunoglobulin (OKT3) has been shown to cross the blood brain barrier and

may initiate T-cell mediated proinflammatory cytokine release

 

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Hi everyone-

 

We just finished ivig with dr k last Friday.

My son had the massive headache at midnight that evening and vomitted twice.

Does anyone know where these side effects actually come from?

 

He was a trooper. The headache was a doozy though. I felt really bad as the prednisone didn't take it all away. He squirmed all night and the next day felt bad as well. Then out of nowhere he stood up and said "hey my headache is gone."

The ivig follow up sheet said that the headache could disappear spontaneously and it did! Anyone know why these nasty side effects happen and/or what they are from?

 

Thanks

johnsmom

Hi Everyone

Have spoken to few of you but finally got a moment to register and speak online. This forum has been my lifeline for the last two months since my son was diagnosed with pandas. I am very grateful and will do anything and everything I can to help another family if I can.

John's mom - we had IVIG with Dr. K four weeks ago. My son developed a headache first 12 hours after the 2nd day of ivig and which was controlled with Tylenol. Four hrs later he developed vomitting which was controlled by one 10mg dose of steroid. This lasted about 4 hours and we were done. The headaches ct for a couple weeks at home but were controlled with tylenol. If I recall correctly Dr. K was positive about these sideeffects. To him it meant that the IVIG has crossed the BBB and is knocking off the antigen antibody complexes, the toxins being released can cause side effects. I mean my son's hydration was perfect. He was massively hydrated by us a couple days before IVIG and then during IVIG by Dr. K as you know and also by us again. So hydration wasn't an issue with us I don't think. Also, bentonite clay has been very helpful with the headaches, tics etc for absorbing the toxins as my son was flipping the pages last few weeks (THANK YOU WENDY!!). The supplements that Dr. K suggests are very helpful too if followed diligently. The article I think refers to a child with low IgG levels and who reacted adversely to the entire IVIG itself. Dr K does his process so well, he is likely able to catch any flaw or reaction early in the game and change/modify course of action right away. If there is an innate allergic reaction to IVIG its an individual thing I assume. My son's headaches and vomitting were side effects per se.

regards -Jodie

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Well they say they are covering it but I have heard that before and been screwed. We paid up front. Our son is doing fine. He started to present more symptoms with OCD two days before we did IVIG and as of today those are still with him. I took him out of summer school last Tuesday and he returned yesterday. Its only 3 hrs in the morning and its only for 3 weeks. He seems to be doing fine and is not complaining much about going there. I thought he would sleep a little more but he seems a little restless at bedtime with running thoughts but it hasnt lasted that long. This is what happens to him when he is in exacerbation. He has a hard time falling asleep but once he does hes out.

johnsmom

 

Hi everyone-

 

We just finished ivig with dr k last Friday.

My son had the massive headache at midnight that evening and vomitted twice.

Does anyone know where these side effects actually come from?

 

He was a trooper. The headache was a doozy though. I felt really bad as the prednisone didn't take it all away. He squirmed all night and the next day felt bad as well. Then out of nowhere he stood up and said "hey my headache is gone."

The ivig follow up sheet said that the headache could disappear spontaneously and it did! Anyone know why these nasty side effects happen and/or what they are from?

 

Thanks

johnsmom

I read not having enough fluids/water in your system causes the side effects. Its almost like dehydration. How is your son doing now? I think we are having IVIG mid July. Did your insurance cover?

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Hi everyone-

 

We just finished ivig with dr k last Friday.

My son had the massive headache at midnight that evening and vomitted twice.

Does anyone know where these side effects actually come from?

 

He was a trooper. The headache was a doozy though. I felt really bad as the prednisone didn't take it all away. He squirmed all night and the next day felt bad as well. Then out of nowhere he stood up and said "hey my headache is gone."

The ivig follow up sheet said that the headache could disappear spontaneously and it did! Anyone know why these nasty side effects happen and/or what they are from?

 

Thanks

johnsmom

 

Thanks Jodie for explaining that. I never bothered to ask him what the headache and vomitting was from and I was curious. My son also ran a fever for a short period of time. I actually made a 2nd call to him on Saturday because ds was saying his heart was beating fast, which it was, and he was warm. I wanted to know if we could give the 2nd dose of prednisone but Dr K said 'no, all very normal reactions.'

I was all worried about sending him back to summer school but he seems fine. How is your son doing now? What brand and how much Betonite Clay do you use and how much? I have "absorb more toxins" by renew life. It has 3400 mg of Bent clay 400 Glucomannan and 200 activated charcoal. Thats a dose of 4 pills though!! I wonder if I should just buy plain ol' bentonite clay???

thanks for your help

Ann

 

 

Hi Everyone

Have spoken to few of you but finally got a moment to register and speak online. This forum has been my lifeline for the last two months since my son was diagnosed with pandas. I am very grateful and will do anything and everything I can to help another family if I can.

John's mom - we had IVIG with Dr. K four weeks ago. My son developed a headache first 12 hours after the 2nd day of ivig and which was controlled with Tylenol. Four hrs later he developed vomitting which was controlled by one 10mg dose of steroid. This lasted about 4 hours and we were done. The headaches ct for a couple weeks at home but were controlled with tylenol. If I recall correctly Dr. K was positive about these sideeffects. To him it meant that the IVIG has crossed the BBB and is knocking off the antigen antibody complexes, the toxins being released can cause side effects. I mean my son's hydration was perfect. He was massively hydrated by us a couple days before IVIG and then during IVIG by Dr. K as you know and also by us again. So hydration wasn't an issue with us I don't think. Also, bentonite clay has been very helpful with the headaches, tics etc for absorbing the toxins as my son was flipping the pages last few weeks (THANK YOU WENDY!!). The supplements that Dr. K suggests are very helpful too if followed diligently. The article I think refers to a child with low IgG levels and who reacted adversely to the entire IVIG itself. Dr K does his process so well, he is likely able to catch any flaw or reaction early in the game and change/modify course of action right away. If there is an innate allergic reaction to IVIG its an individual thing I assume. My son's headaches and vomitting were side effects per se.

regards -Jodie

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My son, 13, had IVIG twice. Once in October once in March. Both times, following the final dose he got the HUGE headache and threw up several times. He was most certainly well hydrated so that was not the cause. But he does tend to get migraines anyway and when they are bad he throws up anyway so we just thought he was rather prone to this type of reaction.

I am very curious about this BBB because he has gotten migraines since he was 6 and Dr. K thinks he has had PANDAS since he was maybe 4. Wow, there's a whole other can o' worms to dive into!! But I have always wondered if his migraines have had anything to do with PANDAS.

That's why this forum is great because we all feed off of each other and just by sharing we help each other heal our own kids!!

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Hi bubbasmom

 

I remembered your note from when I "took a break" from the forum. Is your son Dairy Free? Sorry for this question as he might be already and I am sure you have researched that with the migraines. I have read so much on dairy and migraines. My sister has a daughter who is 12 and has been getting migraines since she was 8. Kids should not get migraines. Its something underlying. She also has severe constipation at times. I have bugged her for so long to go and get an allergy test done but she wont listen to me. Whatever, I have to take care of my own kid.

 

My son was diagnosed with PDD-NOS at the age of 5. Dr K says that it is a junk diagnosis and I believe him. I cant even begin to tell you when I think it started for him. I dont think we will ever know. I noticed OCD at the age of 1 but people think I am nuts and Dr K says early onset if the most difficult to diagnose.

 

Jumping on the autism bandwagon at age 5 meant starting the GF/CF diet and a host of supplements, chelation and therapies. But something popped into my head the other day and its one of my OCD things that I am having a hard time letting go of.

 

You may know this already but the reason some of these 'autistic' kids respond so well to the diet is becuase they have leaky guts. Proteins leak into the blood system and go to the brain making the kid 'high'. The meltdown comes when it wears off.

 

i never wanted to to do the diet cuz John did not have explosive diarhea or constipation or 'bad poops" But we did notice that when he got an infraction we had a meltdown 24 hrs later. I never had him tested and just put him on the diet blindly.

 

So the million dollar question is: Does the wheat and dairy trigger a PANDAS reaction instead of a leaky gut reaction? UGh so confusing! Isnt a food intolerance just an IGG antibody response?

 

thanks again for your well wishes a few weeks back. John is back at summer school and is just as goofy as he was before IVIG as he is now. Hes a little irritable too but I think I would be too.

 

Ann

 

 

 

My son, 13, had IVIG twice. Once in October once in March. Both times, following the final dose he got the HUGE headache and threw up several times. He was most certainly well hydrated so that was not the cause. But he does tend to get migraines anyway and when they are bad he throws up anyway so we just thought he was rather prone to this type of reaction.

I am very curious about this BBB because he has gotten migraines since he was 6 and Dr. K thinks he has had PANDAS since he was maybe 4. Wow, there's a whole other can o' worms to dive into!! But I have always wondered if his migraines have had anything to do with PANDAS.

That's why this forum is great because we all feed off of each other and just by sharing we help each other heal our own kids!!

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