The most scared I have ever been

[momtocole1]

My son 12 years old had his 2nd full dose (Dr. K dose) IVIG this past Wednesday and Thursday of this past week. We are 72 hours out and he is flipping out beyond belief. Threatening suicide, screaming crying, saying he can't take it anymore. Hitting himself in the head. He got out on his balcony and said he wants to jump but said he is too afraid to die that he will go to ######.

 

He also has periods where he is very happy and even though the OCD is there, he is playing and having fun.

 

I am so scared. I don't want to take him to the hospital, but I will if I truly feel that he is trying to hurt himself.

 

He tried to run away and ran up the street in bare feet and I had to chase him down in the car. If he wasn't having periods of calmness and happiness, I would think it was a psychotic break.

 

Please share your stories about post IVIG.

 

He has also had 3 nose bleeds today, from the crying?

 

5 minutes ago he was on his balcony, saying he was going to jump. Now he is curled up watching TV with his sister, laughing.

 

I know this is an extreme case. He did so well after the last IVIG, it was bumpy, but he got progressively betterover a 2 1/2 month period and then a total backslide. We even almost had him back to school.

 

Please help,

[momofgirls]

Oh my gosh I am so sorry to hear about your son. Who is your doctor and what are they telling you? I do know a lot of people (including us) have seen a worsening of symptoms for a few weeks post ivig so maybe this is what you are seeing. Have you ever tried motrin for your son? Some people say that helps. Hang in there and keep us posted.

My son 12 years old had his 2nd full dose (Dr. K dose) IVIG this past Wednesday and Thursday of this past week. We are 72 hours out and he is flipping out beyond belief. Threatening suicide, screaming crying, saying he can't take it anymore. Hitting himself in the head. He got out on his balcony and said he wants to jump but said he is too afraid to die that he will go to ######.

 

He also has periods where he is very happy and even though the OCD is there, he is playing and having fun.

 

I am so scared. I don't want to take him to the hospital, but I will if I truly feel that he is trying to hurt himself.

 

He tried to run away and ran up the street in bare feet and I had to chase him down in the car. If he wasn't having periods of calmness and happiness, I would think it was a psychotic break.

 

Please share your stories about post IVIG.

 

He has also had 3 nose bleeds today, from the crying?

 

5 minutes ago he was on his balcony, saying he was going to jump. Now he is curled up watching TV with his sister, laughing.

 

I know this is an extreme case. He did so well after the last IVIG, it was bumpy, but he got progressively betterover a 2 1/2 month period and then a total backslide. We even almost had him back to school.

 

Please help,

[Nita]

First, a big hug. Second, it's what we are seeing with our son too, and we spent the day wondering if we should take him to the hospital too. Our 13 year old son had one a couple of weeks ago. It was his second one as well. He was being demanding, angry and threatening to harm himself or us if we didn't do as he said. Now he's up playing a video game and laughing, totally forgetting about OCD. Dr. K told us last time this was normal, but it is so hard to go through. Hope things get better soon for both of our boys. I have been giving him Advil and it helps a little, although I know it's not recommended for too long a time due to liver damage possibility.

 

My son 12 years old had his 2nd full dose (Dr. K dose) IVIG this past Wednesday and Thursday of this past week. We are 72 hours out and he is flipping out beyond belief. Threatening suicide, screaming crying, saying he can't take it anymore. Hitting himself in the head. He got out on his balcony and said he wants to jump but said he is too afraid to die that he will go to ######.

 

He also has periods where he is very happy and even though the OCD is there, he is playing and having fun.

 

I am so scared. I don't want to take him to the hospital, but I will if I truly feel that he is trying to hurt himself.

 

He tried to run away and ran up the street in bare feet and I had to chase him down in the car. If he wasn't having periods of calmness and happiness, I would think it was a psychotic break.

 

Please share your stories about post IVIG.

 

He has also had 3 nose bleeds today, from the crying?

 

5 minutes ago he was on his balcony, saying he was going to jump. Now he is curled up watching TV with his sister, laughing.

 

I know this is an extreme case. He did so well after the last IVIG, it was bumpy, but he got progressively betterover a 2 1/2 month period and then a total backslide. We even almost had him back to school.

 

Please help,

[momtocole1]

Yes we are using Motrin. Dr. is not really experienced in PANDAS. I am going to set up another phone consult tomorrow with Dr. Kovasevic in Chicago.

Thank you,

 

 

My son 12 years old had his 2nd full dose (Dr. K dose) IVIG this past Wednesday and Thursday of this past week. We are 72 hours out and he is flipping out beyond belief. Threatening suicide, screaming crying, saying he can't take it anymore. Hitting himself in the head. He got out on his balcony and said he wants to jump but said he is too afraid to die that he will go to ######.

 

He also has periods where he is very happy and even though the OCD is there, he is playing and having fun.

 

I am so scared. I don't want to take him to the hospital, but I will if I truly feel that he is trying to hurt himself.

 

He tried to run away and ran up the street in bare feet and I had to chase him down in the car. If he wasn't having periods of calmness and happiness, I would think it was a psychotic break.

 

Please share your stories about post IVIG.

 

He has also had 3 nose bleeds today, from the crying?

 

5 minutes ago he was on his balcony, saying he was going to jump. Now he is curled up watching TV with his sister, laughing.

 

I know this is an extreme case. He did so well after the last IVIG, it was bumpy, but he got progressively betterover a 2 1/2 month period and then a total backslide. We even almost had him back to school.

 

Please help,

[Iowadawn]

My son 12 years old had his 2nd full dose (Dr. K dose) IVIG this past Wednesday and Thursday of this past week. We are 72 hours out and he is flipping out beyond belief. Threatening suicide, screaming crying, saying he can't take it anymore. Hitting himself in the head. He got out on his balcony and said he wants to jump but said he is too afraid to die that he will go to ######.

 

He also has periods where he is very happy and even though the OCD is there, he is playing and having fun.

 

I am so scared. I don't want to take him to the hospital, but I will if I truly feel that he is trying to hurt himself.

 

He tried to run away and ran up the street in bare feet and I had to chase him down in the car. If he wasn't having periods of calmness and happiness, I would think it was a psychotic break.

 

Please share your stories about post IVIG.

 

He has also had 3 nose bleeds today, from the crying?

 

5 minutes ago he was on his balcony, saying he was going to jump. Now he is curled up watching TV with his sister, laughing.

 

I know this is an extreme case. He did so well after the last IVIG, it was bumpy, but he got progressively betterover a 2 1/2 month period and then a total backslide. We even almost had him back to school.

 

Please help,

 

 

Give me a call if you want to talk. We are late getting to bed tonight, so with the time difference it should be perfect.

 

It was WEIRD bumpy. Like rapid cycling bi-polar. Nasty, beligerant, drunken sailor BLECK. For about 2 1/2weeks,

 

Don't hesitate to call.

 

Dawn

[coco]

I am so sorry that you are going through this...please know that the first weeks into months of ivig can be a nightmare. It was for our daughter. We are post 7 weeks and the first 4 were so horrible-- rages, tantrums, crying, screaming, biting, hitting, spitting. Never have we seen anything like this before during any pandas episode. Week 5 things started to settle, and that only means that she was able to be tolerated by the family. It breaks my heart to say that. Week 6, great days started for about a week...now lots of ups and downs. We spoke with Dr. K on Tuesday and he said that this was normal and each child has a different set of symptoms. He advised us not to do another treatment until the 3 month mark and then see if she is improving, holding or sliding. Right now she has difficulty staying in her bed after she had been tucked in and goodnights have been done. Last night she was up walking the halls and turning on and off lights until 2 am. Very moody today...then hours of goodness, then flipping back again. It is torture for the family, without question. We ourselves do not know when this will all settle down, just going day by day. It is white-knuckle time and the pressure is enormous. You are not alone...please hang in there. We are all with you.

[fuelforall]

Hm well these are all pretty scary posts for those who can't wait for some relief.

Momtocole, why did he backslide so at the end of his treatment? "We almost had him back to school" Yikes, what has he been doing outside of school? It's a big issue with my ds9, getting him back to school.

 

I guess my only rec for kids post IVIG during the rough period is... go on a vacation. My son had horrendous anxiety the night before and morning of our departure but suddenly his mood switched and he was ready to go. We've been away five days out of the hothouse of our apartment and it's been beneficial. He pretty much gets whatever he wants although I do insist on some behavior changes here and there. His silly brain has been kind of bad but his grandmother and I found out he responds better to one on one treatment, without sibling or other parental distraction. He does very well when alone with his grandmother.

 

So he's been no gem but we're eleven days out from IVIG and maybe healing will come a little more quickly.

 

M

[mom2gsd]

Could it be that some "teens" have a rough spot following IVIG, possibly d/t hormones? Wonder if this plays into it? Interesting.....mine does it too.....he just turned 14.

[thereishope]

I'm sorry you are going through this. Were these behaviors (threats and such) present at any time prior to IVIG? Could this be flipping back the pages? My son at age 5 threatened to hurt himself and wanted to not be around anymore. It's an awful thing to hear your child say that. I've had suicide enter my life before ( not me, but loved ones) so that hurt my heart even more.

 

Touch base with the dr like others said. Can he take Benadryl? Do you know how he reacts to it? Perhaps that will calm him down. How much does he weigh and how much Ibuprofen are you giving him?

 

If it comes to hospitalization to ensure safety, please make sure the hospital understands PANDAS. This is very important. PANDAS kids are different than what they are use to dealing with.

[7upMom]

We haven't had IVIG yet ( we do it next week for our 9 y/o son) so I don't know about the rages after, but we have rages like you are describing up until this time. My thoughts and prayers are with you- stay strong and just know you will see a better day- I hope you see it soon

[bubbasmom]

RIGHT THERE WITH YOU RIGHT NOW. My 13 year old son's second IVIG was 3/22 and 3/23. We had almost canceled it because he was doing so well. Then poof, 3 days after IVIG things were right back to PANDAS. I feel so bad for him. It really frustrates him.

Again a teenager, I wonder if that has something to do with it. Had I thought the IVIG would do this to him I might have reconsidered.