worse after ivig

[Priscilla]

I asked about this before but I want to see if anyone else has had this experience, or any info. My dd 8 had IVIG #1 on 7/31. We had what we though was a mild improvement within a few days, then 1 week to the day things took a turn for the worse. We are on abx also but the rage is out of control. She is soooo angry. I can't believe the things she says to us. We picked her up to go school shopping and out to eat today, without any warning in the car she started screaming how she hates us, wants to kill us, we are so mean, stupid... she wants to punch us in the face. She also follows thru with the physical hitting,,kicking... We are trying so hard, staying patient, trying to be supportive... I am rambling, as you all know, it's bad. I think I have heard Lyme can cause this worsening, it doesn't make much sense to us for lyme, mycoplasma makes a little more sense but I wouldn't count anything out at this point. I am thinking about getting the lyme and mycoplasma tests but how accurate would they be after ivig?? and on abx???? Then I hear so much about the different tests, can anyone suggest the most accurate, I would hate to have to start treking down another path and change course of treatment, subject my dd to unneccessary meds/tx/labs if we can't even rely on the tests. I am just searching for some input, so many of you have so much good info. Thank the good Lord above for this forum and all of you. Could you imagine not having this resource, each other???

[tired mom]

I wish I had some good advice for you but all I can offer is a cyber hug. My dd also gets sooo angry. The rages and hurtful words are at times the most difficult to handle. You always have to seperate the illness from the child. This at times becomes very trying. My niece also exibits the same behaviors and both my dd and her have tested positive for myco. My niece also had Lyme. I hope you begin to see improvement.

[pathfinder]

Priscilla

My heart goes out to you and I will pray for your daughter and your family.

My son had very very bad rage and aggression about 6 months ago and it turned out he had high mycoplasma P titer.

He also had ASO titer but that goes without saying as he is PANDAS kid with annoying OCD( asking same question over and over kind)

but mycoplasma P made him very very angry and aggressive. I hope that helped.

God bless

Diamond Bar

[LNN]

DS had IVIG mid-June. He got way worse between weeks 3-6, then slowly improved. At week 8, to the day, he got noticeably better. We are now 10 weeks out. Still healing, but past the ugly part.

 

You will read this and say "well, that's your child. How do I know it will be the same for mine?" and the answer is "I don't". It is horrifying to have to deal with this and go back to dark places. I can't tell you how long it may last, only that this episode doesn't necessarily mean it's anything other than Pandas and an IVIG thing. Some kids seem to have great relief from IVIG fairly soon and others seem to go thru a lot of emotional pain. I don't know if it has any correlation with long term outcome.

 

That being said, the severity of my son's reaction did prompt us to do an Igenex test to rule out Lyme. We waited 9 weeks post-ivig (did not order the PCR panel as you need to be off of abx for that). We don't have results back yet. But my son does seem to be recovering, which makes getting thru a day much easier.

 

For the rage, you may try some CBT techniques - discuss/practice when she's not agitated. The idea is to de-personalize the rage - make it a third party. Younger kids may name it, older kids may just mentally think of it as the disease. So long as they realize the rage is not who they are, but is rather a symptom that they need to control. When the rage starts up, you try to "catch it" - identify what's happening and break the cycle. Empower your child and make them realize rage is an enemy. In the same way you might demonize a cupcake when you're dieting. "No!" you tell the cupcake. "You are trying to keep me fat! I will no give in to your evil temptress ways!" and you walk away from the cupcake instead of eating it. Your daughter can practice doing the same thing with Rage. She can catch it in the act, tell it "no, I will not let you take over my mind and my feelings" and use CBT skills to de-escalate. A book we found helpful was Tamar Chamsky's "Freeing Your Child From Anxiety" - except you substitute the word "rage" for anxiety. But the techniques work for both emotions. The goal is to make your daughter realize she is in control, not a victim or powerless puppet to her own emotions. It takes work, but we've seen long term results with the technique.

 

Hang in there. Today's reality won't last forever.

[cfrei]

I asked about this before but I want to see if anyone else has had this experience, or any info. My dd 8 had IVIG #1 on 7/31. We had what we though was a mild improvement within a few days, then 1 week to the day things took a turn for the worse. We are on abx also but the rage is out of control. She is soooo angry. I can't believe the things she says to us. We picked her up to go school shopping and out to eat today, without any warning in the car she started screaming how she hates us, wants to kill us, we are so mean, stupid... she wants to punch us in the face. She also follows thru with the physical hitting,,kicking... We are trying so hard, staying patient, trying to be supportive... I am rambling, as you all know, it's bad. I think I have heard Lyme can cause this worsening, it doesn't make much sense to us for lyme, mycoplasma makes a little more sense but I wouldn't count anything out at this point. I am thinking about getting the lyme and mycoplasma tests but how accurate would they be after ivig?? and on abx???? Then I hear so much about the different tests, can anyone suggest the most accurate, I would hate to have to start treking down another path and change course of treatment, subject my dd to unneccessary meds/tx/labs if we can't even rely on the tests. I am just searching for some input, so many of you have so much good info. Thank the good Lord above for this forum and all of you. Could you imagine not having this resource, each other???

[cfrei]

My daughter has PANDAS and Lyme and I am fully convinced that its treating BOTH that has gotten us to where we are today, she is still suffering with the tics - but all of the rage and anger is gone. My daughter is fully back. PLEASE go and get her tested for Lyme. The IVIG will not effect the Lyme test. If she has Lyme and co-infections (like my daughter) then she will not get better without long term treatment of antibiotics. And IF she does have Lyme, make sure that you go to an ILAD Lyme doctor. Also, there are only a couple of Lyme blood banks (Igenex and Stoneybrook are two of them). If you want to talk further about this offline, please email me at exec5565@yahoo.com and I am happy to give you my phone number. I remember when my daughter threatened to kill me and how scary that time was. I promise with the right treatment, she will get better. Hang in there. Cindy

[saidie10]

DS had IVIG mid-June. He got way worse between weeks 3-6, then slowly improved. At week 8, to the day, he got noticeably better. We are now 10 weeks out. Still healing, but past the ugly part.

 

You will read this and say "well, that's your child. How do I know it will be the same for mine?" and the answer is "I don't". It is horrifying to have to deal with this and go back to dark places. I can't tell you how long it may last, only that this episode doesn't necessarily mean it's anything other than Pandas and an IVIG thing. Some kids seem to have great relief from IVIG fairly soon and others seem to go thru a lot of emotional pain. I don't know if it has any correlation with long term outcome.

 

That being said, the severity of my son's reaction did prompt us to do an Igenex test to rule out Lyme. We waited 9 weeks post-ivig (did not order the PCR panel as you need to be off of abx for that). We don't have results back yet. But my son does seem to be recovering, which makes getting thru a day much easier.

 

For the rage, you may try some CBT techniques - discuss/practice when she's not agitated. The idea is to de-personalize the rage - make it a third party. Younger kids may name it, older kids may just mentally think of it as the disease. So long as they realize the rage is not who they are, but is rather a symptom that they need to control. When the rage starts up, you try to "catch it" - identify what's happening and break the cycle. Empower your child and make them realize rage is an enemy. In the same way you might demonize a cupcake when you're dieting. "No!" you tell the cupcake. "You are trying to keep me fat! I will no give in to your evil temptress ways!" and you walk away from the cupcake instead of eating it. Your daughter can practice doing the same thing with Rage. She can catch it in the act, tell it "no, I will not let you take over my mind and my feelings" and use CBT skills to de-escalate. A book we found helpful was Tamar Chamsky's "Freeing Your Child From Anxiety" - except you substitute the word "rage" for anxiety. But the techniques work for both emotions. The goal is to make your daughter realize she is in control, not a victim or powerless puppet to her own emotions. It takes work, but we've seen long term results with the technique.

 

Hang in there. Today's reality won't last forever.

 

I am feeling this too. This is all great advice. DS7 is 4 days post and his rage/anger/anxiety/frustration is definitely ramping up

[lynn2]

I was reading this and feeling very anxious since DS will get IVIG tomorrow. Then I decided to look back through the posts and noticed that everyone that I could find that posted about the black period of symptom ramp-up and getting worse and no improvement(from IVIG to maybe 4 to 12 weeks out)later posted about substantial gains and improvement. It is sort of hard to calibrate in real time because the amount of time between the sad posts and the happy posts is just far enough that you forget or don't realize it is the same person. I hope things improve soon for you and that you are the next one posting a happy post!

 

Lynn

[coco]

When my dd had her high dose ivig we saw a much worsening of symptoms -- just horrible -- for about 8-9 solid weeks. Then we saw a leveling off and by month 4 it was really getting much better, not wiithout issues, but she was doing a lot better. With some kids the rollercoaster ride is heck, for sure, after ivig. There is a battle ranging inside them and it is hard to go through. I would also recommend testing for coinfections as it can halt ivig full benefit.

[Priscilla]

Thank you all for your replies, glad to know we are not alone. I wish the best to all of you! I am going to try to get the mycoplasma test. She had several bouts of pneumonia as a baby/ toddler. Seems that the mycoplasma + kids are exhibiting the rage????

[kmom]

I'm so sorry to read about daughter and will keep her in my thoughts and prayers. My DD8 hasn't had IVIG but Dr. B is going to get pre-certification from insurance co. I have been on the fence and trying to research what is best for her. We've done every possible test except for a more in depth Lyme's test thru IGeneX. After those results we're leaning toward IVIG. I so wish that was the answer to our prayers but who knows. Were you on the fence before you did it or were you confident? Was your DD tested and cleared for mycoP and Lymes and you think she caught it afterward or never tested?

[Priscilla]

She wasn't tested before because she is so textbook for PANDAS. Has hx strep, elevated titers, almost ALL diagnostic criteria. We are still pretty fresh after IVIG. I was confident in doing it. I think we just need more time. She has another dose this weekend. This may be the "turning of the pages" We have decided to respond differently to the rage, and it is helping to prevent it from escatlating as far. Parenting is hard enough, then throwing this in the mix really steals your confidence on how to parent. But we are working hard on patience and it is helping us all get through it. I hope things go well for you!

[kmom]

Thanks for responding. Just trying to figure our medical mystery out and get as much info as possible to make the best possible decisions on something that isn't so easy/clearcut. Our DD definitely had 4 recurrent strep infections this past winter, tonsils removed and then PANDAS hit. She has been on 3 abx's, Augmentin doing the best for her but with school starting we're realizing we need to try to nip that last bit of OCD and tics or school may not be a reality for her. Dr. B thinks IVIG will do that for her. We thought we had all possible bloodwork done but since Quest lab only did the initial Lyme's test which was neg., we never got info on Western Blot and co-infections. So he wants DD to do Lyme's and co-infections panel thru Igenex. This way we'll know if any other infection is coinciding with PANDAS. So we'll see in a few weeks.

 

You said it well...parenting is challenging enough, tiresome, rewarding, etc. But dealing with PANDAS makes us have to rethink how to handle so many situations that seemed so easy to handle before.

 

Thanks for helping and best of luck!!!

[EAMom]

Hi Priscilla,

 

have you checked family members for strep (carriers)?

 

Also, what part of CA are you in?

[Fixit]

looking back...do you think having the tonsils out was a mistake...

do you know how they looked or were they harbroing anything...

curious...as we are consider A & T also...