1wk post IVIG raging/anxiety/frustration is AWFUL

[saidie10]

Sad tonight. Just need to hear some "it's ok" and "it's normal" for ramping up of symptoms post IVIG. DS7 is really melting down at night after school...homework is a complete disaster and we are seeing his rages that were definitely part of his exacerbation symptoms. Fists clenched, knuckles white, fire coming out of his mouth and steam coming out of his ears - or at least is sure looks that way. Screaming, hitting, etc...I could go on and on and you guys all know what I am talking about. And then the facial tics. He did all kinds of old and new tics all the way home from school. I watched him in the rear view mirror and my heart just broke and I was fighting back the tears. Been a long time since we have seen those .

 

How do you tell a 7 year old that it is going to get better when he is telling you the medicine didn't work Mommy . He told me he worries about everything and he is still seeing the fairy's. So hard to hear

 

Please just tell me it is going to get better.

Edited August 27, 2010 by saidie10

[Iowadawn]

I hate to tell you this, but "hold on tight". The ride could get a little wild for a while. It is an awful feeling. Boy... can I empathize. It should get better. Take a deep breath. Dawn

[LNN]

Yes, hold on tight. I don't care how many times you hear about it getting worse before it gets better, I don't think you're ever emotionally prepared to go back to those dark places. It was a horrible experience for us. My post won't be of much comfort right now. Our worst period was between weeks 3-7. Then things took a significant improvement in week 8. Yesterday was our 10 week anniversary and it was our first day of "normal" in 3 months. It was an exhausting summer, filled with doubt about what was happening. But yesterday was truly joyous - the whole family commented on it, savored it.

 

We did find that dosing with motrin steadily, every 6 hours, made a noticeable difference in the mood issues. It took the edge off, which was enough to get us all thru the day. At one point, my DS7 could not subtract 7-0. Took him 15 minutes of whining and tantrum to figure out one math problem. I gave him motrin and an hour later, he did the same math problems in 5 minutes and looked at me like he couldn't understand how this could've been hard. It didn't make everything all better, but it gave us all just enough strength to get hold on. I'd suggest getting a doctor's note permitting your son to take motrin during the day at school to keep things constant. When we were sporadic with giving it, it didn't have the same impact. We used it for far too long - about 6 weeks of steady use, which is very hard on the liver. But I didn't want to use prednisone in our case because DS had already been on it several times in the past year.

 

Dig deep. Try to be strong. Give him plenty of slack on school issues. Try to focus on the long term, as hard as that is right now.

[Fixit]

Sad tonight. Just need to hear some "it's ok" and "it's normal" for ramping up of symptoms post IVIG. DS7 is really melting down at night after school...homework is a complete disaster and we are seeing his rages that were definitely part of his exacerbation symptoms. Fists clenched, knuckles white, fire coming out of his mouth and steam coming out of his ears - or at least is sure looks that way. Screaming, hitting, etc...I could go on and on and you guys all know what I am talking about. And then the facial tics. He did all kinds of old and new tics all the way home from school. I watched him in the rear view mirror and my heart just broke and I was fighting back the tears. Been a long time since we have seen those .

 

How do you tell a 7 year old that it is going to get better when he is telling you the medicine didn't work Mommy . He told me he worries about everything and he is still seeing the fairy's. So hard to hear

 

Please just tell me it is going to get better.

 

gosh..i'm not the parent..but 1 week post ivig...i would say..skip the homework completely...

at about 7 it would ds and i more than an 1 1/2hrs of fighting to get homework done..dh traveled..and it was all me...

about 2-3 months in..spoke with teacher..(we have such a wonderful school...just met with new teacher yester.so cool...more later(but cant get 504 as he excels in all classes))...and she said what ever is not done after 20 minutes don't worry about it...took such a load off...and after a month, once we stopped battleing he kinda just came round...got more and more done in that time limit..so by end took 30 min to do all homework...

keep in mind it's the 1,2n grade...he can catch up later...

just try to take something off your plate

[saidie10]

Thanks guys! I appreciate all the input and advice here. We are prepared for the battle...thick skin;check...sympathetic and loving heart;check, check...patience, patience, patience;check, check, check!

 

We have an understanding teacher so we will see how things go next week with homework and may have to make some changes temporarily!

[Mary M]

Our experience was that post IVIg was horrible, too. We started to see improvement after wk 5 so it can be a long haul and quite a challenging roller coaster. It is hard for both parent and child to be hopeful when things are so bad after what is supposed to help make things better. In our experience IVIg does make things better, it just takes time...and the wait is so hard.

[NancyD]

Do WHATEVER you can to minimize stress during the healing process as stress only makes the symptoms worse. This may mean eliminating homework and chores and loosening up on expectations. And as everyone says, things WILL get better!

 

Laura, I'm so glad to hear that DS is much better now. YEAH!!

 

Nancy

Edited August 27, 2010 by NancyD

[Priscilla]

I just posted about this b/c starting 1 wk post IVIG we were in the ER for sedation it was so bad. We are in our 4th wk post, she is starting to even out but we get another tomorrow. The rage is still there but not as frequent, and I am seeing my daughter again in between (haven't seen that in months) I have found that staying calm and neutral during the rage helps it pass ALOT quicker. I basically have to ignore her for a few minutes unitl it passes. This has been HUGE in helping us all to deal with it. It is soooo hard b/c she kicks, hits, punches, scratches me. I try not to talk to her and walk away until she calms down. She yells alot of horrible things, but she is actually starting to open up and express her feelings in some very small increments during this. Hold on, be patient. I know it will get better for you!

[mama2alex]

We are 4 weeks post 2nd IVIG and have not seen the terrible symptoms you describe, but we definitely saw them after the first IVIG (starting about 3 weeks post). The thing we've done differently this time is to follow a detox regimen our DAN doc recommended. This assumes that the healthy antibodies introduced by IVIG are causing a sudden die-off of various infections. Not sure if this is what's helped this time, or we've just been lucky, but things have been fairly smooth (although not perfect) over the last few weeks.

 

Here's what we're doing:

 

Pushing water (64 oz a day, if possible - for a 65 lb child)

6 Tbsp bentonite clay per day

Epsom salts baths several times a week

Supplements for thyroid and adrenal support

Homeopathic detox drops

 

In addition, the doctor who gave us this IVIG recommended Ester C, folic acid, and omega 3 supplements for 6 weeks post IVIG. We didn't do this last time.

 

I hope things get easier very soon. I remember how hard it was for us after the first IVIG - it was awful, and so scary.

[NancyD]

V-e-r-y interesting! I always push lots of water and epsom salts baths for at least 2 weeks after and she takes Omega 3 2x daily but the rest makes good sense. Great conversation to have with our DAN doctor. Thanks for posting this, mama2alex.

 

Nancy

 

We are 4 weeks post 2nd IVIG and have not seen the terrible symptoms you describe, but we definitely saw them after the first IVIG (starting about 3 weeks post). The thing we've done differently this time is to follow a detox regimen our DAN doc recommended. This assumes that the healthy antibodies introduced by IVIG are causing a sudden die-off of various infections. Not sure if this is what's helped this time, or we've just been lucky, but things have been fairly smooth (although not perfect) over the last few weeks.

 

Here's what we're doing:

 

Pushing water (64 oz a day, if possible - for a 65 lb child)

6 Tbsp bentonite clay per day

Epsom salts baths several times a week

Supplements for thyroid and adrenal support

Homeopathic detox drops

 

In addition, the doctor who gave us this IVIG recommended Ester C, folic acid, and omega 3 supplements for 6 weeks post IVIG. We didn't do this last time.

 

I hope things get easier very soon. I remember how hard it was for us after the first IVIG - it was awful, and so scary.

[forjpj]

We wrapped up IVIG yesterday...I think I am gonna be buying a lot of Slurpees!! He drinks a lot anyway, but the more I tell him to drink...in true pandas fashion...the less he wants to!! Better up the Slurpee budget!!

[NancyD]

Hi Sarah,

 

So glad the infusion went well yesterday. One word of caution re slurpees. Don't they have dyes in them?? I have found with my DD that dyes (particularly during the healing process after IVIg) are much more lethal. And that makes sense because the BBB is breached. I find they escalate the mood dysregulation and rages. Red and blue dyes make DD psychotic. Yellow not so much.

 

Nancy

[forjpj]

Oh thanks!! Don't want to make it worse!! Yikes!! What do you think coke slurpees will do? I'm really worried he isn't going to drink enough. I wanted to make it as appealing as possible. He pulled that yesterday at the ivig, they gave him fluids to help. I had a doc tell me once get them to drink no matter what...of course, we weren't talking about pandas...just general old sickness. PM/email what you think...I don't want to hijack the topic!!

 

Good luck Saidie!! We can hold on tight together the next few weeks!!!

 

Sarah

Edited August 28, 2010 by forjpj

[EAMom]

We also had less "turning back the pages" after the second IVIG (vs. the first).

[forjpj]

That is what I am hoping...we had pex in Feb....so I was hoping that might help with the regression. I am seeing some, hoping it doesn't get worse, but trying to mentally plan on it as much as possible.