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Hi everyone,

We are 2 days post ivig-which went very well. Even had coffee one day alone with dr k, will tell you all about it when I have something besides my iPhone to type on.

Ds got headache evening of second day of treatment. We called him, and went ahead giving steroids for. He got one 40mg dose of prednesone. He is 11, 100lbs.

That was Friday nite. On Saturday he had minor headache, didn't bother him until bedtime, so gave half dose of adult Tylenol. (250mg) and he went to sleep.

Today woke up with a dooosey- gave him full adult dose of Tylenol. He fell back asleep when it kicked in.

He was also really hyper and "ADHD" yesterday.

I have 2 questions for those who have already done ivig.

1)how long is it normal to have the headaches? I have another dose of prednesone which I could give if needed but I want to avoid.

2)was the hyperness from the ivig, or the prednisone he got Friday night? We are on vacation at my parents home, and after all this he really needs to sleep, which he didn't get much of before or during treatment days, so if the prednisone is causing the hyperness, I really will look for other headache options.

 

Dr k said that lids that get the headache usually respond faster to ivig...but I wonder if it's because those kids are usually taking the steroid burst that is causing that effect.

Also, he said he is working alot with anorexia right now, and said that kids that have food, swallowing, or body issues have both a higher response to the ivig-more like a 95 percent success rate instead of 85, and a higher relapse rate as well, 20-25 percent with re-exposure.

I would not have put ds in that category, bit dr k said that bcs ds cannot tolerate seeing me or dh swallow or eat with us, that yes, he has food and swallowing issues.

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Hi,

 

Sounds like things are going as planned. Not sure if I can answer your hyperactivity question since my dd10 was hyper before IVIG, but she began to calm down 2 weeks after IVIG (she is now 10.5 weeks post.) She got the massive headache right on cue, to the exact time Dr. K said it would occur. The headaches came and went for two weeks also and then periodically after that. Exactly 3 weeks post, right after midnight, she experienced a mild fever spike, headache and vomited and woke up fine the next morning, but with a symptom shift like a pendulum that swings back and forth but each time looses its energy.

 

The food issue is interesting. Post IVIG, she is experiencing the opposite; increased appetite and strong carb craving. She was exhibiting some weird food issues prior to treatment, texture avoidance, ect. Not now though.

 

My hunch would be to hold onto the prednisone and not use it now.

 

Jill

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*waves* My son and I were there on Friday for our first day (the non stop talking boy in the middle cubicle.

 

My son was not hyper before, but on Saturday he was WIRED!! Non stop talking to Lana, refusing to sit or lie down. The minute our movie was done he was up and trying to visit the kid in the other cubicle. Lana even told me to take him and his IV pole for a walk through the building, up the escalator, and around the 2nd floor. He never got drowsy from the Benedryl, never got cold, and is going full speed + 10 today. Me--I've got the headache and nausea and the exhaustion!!

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Jill-

Maybe I didn't say if correctly- the food texture issues should go away, with the ivig if it is working, so it is doing exactly what dr l said it would for you.

Ds has issues with seeing me swallow things, which we hope will go away after ivig, and to dr k this falls into the food issues, anorexia category, even tho ds rats fine himself. Past few months ds has started with body image stuff, dr k says that is consistent w course of pandas bcs the behaviors change from episode to episode, they evolve.

 

One of the problems he says is parents are too overly concerned the the specific behaviors. Parents will wait until a behavior is harmful or horribly debilitating to child or family before searching out pandas help. This is true for us-while we saw our ped and a neurologist for tic, we were willing to accept "it will go away in a couple months" wasn't until ds started to look into sun that I got really serious about checking for every possible thing including pandas.

To dr k it doesn't matter so much what it is they are dong(although he has some general categories)

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Also, he said he is working alot with anorexia right now, and said that kids that have food, swallowing, or body issues have both a higher response to the ivig-more like a 95 percent success rate instead of 85, and a higher relapse rate as well, 20-25 percent with re-exposure.

 

Both times our dd got headaches post IVIG (for only a couple of days), we alternated tylenol and ibuprofen. Is this kind of new, Dr. K. using steroids post IVIG?

 

THat is an interesting tidbit re. anorexia...our dd did have a good response to IVIG #1 but then replapsed 6mo. post (the first time she got a fever.)

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Jill-

Maybe I didn't say if correctly- the food texture issues should go away, with the ivig if it is working, so it is doing exactly what dr l said it would for you.

Ds has issues with seeing me swallow things, which we hope will go away after ivig, and to dr k this falls into the food issues, anorexia category, even tho ds rats fine himself. Past few months ds has started with body image stuff, dr k says that is consistent w course of pandas bcs the behaviors change from episode to episode, they evolve.

 

One of the problems he says is parents are too overly concerned the the specific behaviors. Parents will wait until a behavior is harmful or horribly debilitating to child or family before searching out pandas help. This is true for us-while we saw our ped and a neurologist for tic, we were willing to accept "it will go away in a couple months" wasn't until ds started to look into sun that I got really serious about checking for every possible thing including pandas.

To dr k it doesn't matter so much what it is they are dong(although he has some general categories)

 

Nope, I got what you said. Yes, the food avoidance/texture issues totally vanished. Not sure if I should be concerned about the carb craving though. She's gained 3 lbs in the 10.5 weeks since IVIG. Still looks like a completely healthy weight. Just eats fast, like she's starving and will search out sweets and snacks, especially when bored...... can't say that apple has rolled far from this tree<_<

 

But is she "obsessed" with food now? I hope not, but I'm watching.... Otherwise, she is doing really, really fantastic.

 

Heirgesell mentioned the Anti-Inflammation Zone by Sears which really peeked my curiosity (for myself as well.) I'm off to go check it out.

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Thanks for all the replies. I did call dr k and he said to give anvil since tyleniol wearing off quickly, bit if didn't work to give the other dose of steroids. Ds is ok at moment, so holding with anvil I guess.

Gremlin- hi sorry didn't have chance to chat with you. I was so busy filling scrips, and getting things set for our 3:40 flight. Are you from oak parl? There was post couple days ago looking for someone from oakpark.

EAMom - dr k us giving serious only for migraine after ivig (it some related encephalitis ?) we were leaving treatment for airplane to east coast, so he gave me scrip for two doses, and at exactly 7:00 pm when dr k said if he was going to get one it would start, it did.

He also mentioned that he thinks 1.5 dose better than 2 for ivig. He doesn't know why, but according to his stats, he's had higher sucres with that dose. For a doctor he's a bit of a cowboy, but to do what he does you need a little if that. I can see why he is a controversial figure, but we loved him!

Also says he's treated 350 or so pandas patients. Wish buster could survey those people!

He is currently doing 5 to 6 ivig's per week. I'm going to buy some stock in that company. And after doing the math I've decided his nobler should be dr 700K!

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He also mentioned that he thinks 1.5 dose better than 2 for ivig. He doesn't know why, but according to his stats, he's had higher sucres with that dose. For a doctor he's a bit of a cowboy, but to do what he does you need a little if that. I can see why he is a controversial figure, but we loved him!

 

if we need to do IVIG #3, that's the dose we'll try 1.5gm/kg.

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Did she have first two doses at 2? How was second time compared to first? Not so much interested in immediate side effects, I'm curious if she was in complete remission both times, or if it's like antibiotics ...with each virus/exacerbation ds's baseline went up.hope alls well!

Also, since I'm on here maybe you or dh would know- I was a little concerned with how much fluids ds was getting with ivig. As a distance runner, I know that overhydration can be worse than dehydration. My son was practically floating by second day ivig (I started to hydrate him two days before, pushed liquids during and after, and he had pre and post glucose flushes). Dudnt help with headache at all.I'm all for hydration, but saw a post about vision terms issues and am wondering if could be overhydration.

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Did she have first two doses at 2? How was second time compared to first? Not so much interested in immediate side effects, I'm curious if she was in complete remission both times, or if it's like antibiotics ...with each virus/exacerbation ds's baseline went up.hope alls well!

Also, since I'm on here maybe you or dh would know- I was a little concerned with how much fluids ds was getting with ivig. As a distance runner, I know that overhydration can be worse than dehydration. My son was practically floating by second day ivig (I started to hydrate him two days before, pushed liquids during and after, and he had pre and post glucose flushes). Dudnt help with headache at all.I'm all for hydration, but saw a post about vision terms issues and am wondering if could be overhydration.

 

Yup, both were at 2gm/kg. We haven't had as complete a remission (so far) with 2nd IVIG (late May 2010) as with first (Aug 2009). With first, all "movements" (tics?) went away (those returned with the Feb 2010 FEVER where we relapsed). With 2nd (late May 2010) we still have some movements/tics (?) remaining. However, mood and many other things are good now. We also have academic issues. Our margin drift went away with first IVIG (took a couple of months). That did start to come back after the Feb. fever as well. Handwriting still isn't great now (interestingly, handwriting got worse immediately post 2nd IVIG).

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Thanks for all the replies. I did call dr k and he said to give anvil since tyleniol wearing off quickly, bit if didn't work to give the other dose of steroids. Ds is ok at moment, so holding with anvil I guess.

Gremlin- hi sorry didn't have chance to chat with you. I was so busy filling scrips, and getting things set for our 3:40 flight. Are you from oak parl? There was post couple days ago looking for someone from oakpark.

EAMom - dr k us giving serious only for migraine after ivig (it some related encephalitis ?) we were leaving treatment for airplane to east coast, so he gave me scrip for two doses, and at exactly 7:00 pm when dr k said if he was going to get one it would start, it did.

He also mentioned that he thinks 1.5 dose better than 2 for ivig. He doesn't know why, but according to his stats, he's had higher sucres with that dose. For a doctor he's a bit of a cowboy, but to do what he does you need a little if that. I can see why he is a controversial figure, but we loved him!

Also says he's treated 350 or so pandas patients. Wish buster could survey those people!

He is currently doing 5 to 6 ivig's per week. I'm going to buy some stock in that company. And after doing the math I've decided his nobler should be dr 700K!

 

dd10 got the 7pm doooosey headache too! In the reports coming out of the OCD conference, it was reported that Dr. K had treated 100 children with IVIG and I thought that had to be off! He did 6 the week we were there too. But he travels a great deal, has many patients in other countries, ect.

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