2 weeks post IVIG

[lmkmip67]

Well, we are at the two week mark after IVIG. I am not seeing much improvement yet. I think the defiance has been brought down a notch. Even hubby mentioned that. The OCD is worse. He is making his bird calls constantly tonight, and they only started back up this morning. the touching people is bad. That started a bit before IVIG, but is worse. We are still doing meletonin at night, but he still wakes up plenty early. We have been chickens for the past few months with his horrible bedtime issues anyway, so we give him meletonin and he gets to fall asleep watching tv. I know, not a great idea. But you don't know the hours of screaming we used to go through. It left both my husband and I in tears at times. He is also still dealing with the excessive wiping after going to the bathroom. I haven't seen any new issues, just ramped up old ones. The only thing I can see may have even improved a little is the defiance. I am still holding out hope, but I can't really see much to be hopeful about yet. Should I be seeing improvement by now?

[norcalmom]

no - not yet. a few people see a little something right away, but most see something 5-8 weeks out...some even longer.

 

DS has had 2 hd ivigs. First one, we saw what I thought might be mood improvement right way. And he had minor throat clearing tic that disappearred with in a day or two. BUT the reasons we went there - OCD and tic- like looking into the sun, didn't improve until 4/5weeks...and the OCD never fully disappearred. he had focus issues that went away, and we didn't know how bad they had been until they came back with a bad cold and he came home from school saying he couldn't focus on anything, and that he felt all "pandas-y"...he had first ivig over the summer.

 

He had 2nd ivig about 4 and half weeks ago. I didn't see any improvement until last week. And, its hard to measure day by day, you have to look at one or two week blocks as a whole because he tends to go up an down more abruptly than prior to ivig. Our big improvement was that he finally stopped looking into the sun - just a few days ago. I hope I'm not jinxing it by writing this - he has a baseball game in a couple hours so I get to sit and watch if what he has been reporting to me is true or not (and the sun will be setting into his eyes...so it he is still doing it, we will be sure to see how bad it is)

 

Its up and down though...good days start to outweigh bad ones...at some point!

 

hang in there!!

[SSS]

Well, from what I've read, and seen myself, post IVIG can go a few different ways.

Our first HD-IVIG, the post 2 weeks were AWFUL, too. I couldn't believe it.

One of our Dr.'s suggested putting her on Vancomycin for gut bacteria, even though our most recent test didn't show gut bacteria, I was desperate, so I said okay.

Then things got very good week 4 to 5.

Right after this, she was in school with a class full of strep all week.

She didn't catch 'strep' but it wound her ALL up again, I didn't know if she was going to come back.

SO, did another IVIG right away, 6-7 weeks post the first.

This 2nd IVIG, first 2 weeks were AMAZING.

Hit the 3rd week, not good at all. VERY tough.

Now we are at week 4-5 again, smoother sailing.

I kept my dd6 out of school after this 2nd IVIG.

 

Are you on antibiotics? How is your child's 'gut'? Are you giving probiotics?

I ask this questions because these things can shadow/affect my daughters recovery.

 

I am trying to learn patience, and not throw too much at her at once.

We are also giving fish oil with high EPA to help with inflammation.

If things escalate to crazy, I break out the ibuprofen.

And I also give melatonin at night, and 99.% of the time, she sleeps through.

 

Hang in there!

Edited May 13, 2011 by S & S

[lmkmip67]

He is on augmentin, twice a day. And we do give probiotics that I have given since the start of the antibiotics last fall. His guts seems fine. He never complains about his stomach at all. I guess we just have to wait and see. Hopefully the touching compulsion stops before the school calls...his friends are getting tired of him rubbing their arms. sigh...

[SSS]

I hear what you are saying, my dd's compulsions are hitting and 'swearing' at me and her little sister.

It is very, very frustrating.

The hardest, really. The clothing OCD is doable to me, at this point, but hitting and being told 'shut up!' 'You're rude!'

and hit, gets me.

(having my own vent.)

[kimballot]

My son hit his lowest point at 2 weeks post IVIG. He has been slowly improving each week. Don't give up hope yet...

[lmkmip67]

Thanks. I am trying not to. This weekend is HARD. He went to a birthday party today and could not keep his hands to himself. I am afraid we may not be able to do birthday parties until this touching thing passes. I am not sure I can even have a party for him in late June if this doesn't get better. And that breaks my heart, but someone is going to get very upset if he keeps doing this. I am hoping these symptoms will start improving soon. He is ticing up a storm.

[lmkmip67]

Well, we got a call from the special ed teacher today. Nothing terrible, she just wanted me to know what she is seeing at school. She is seeing the touching, also the vocal tics (we call it his bird call), repeating words, a ritual of touching 4 corners of the paper before writing, total inability to focus, etc. Symptoms have ramped up a lot. I will try to keep updating because I think this is very helpful. I know it would be for me, as I have searched and searched for things like this. So 2 1/2 weeks out and symptoms are increasing. I have accepted life is just going to be tough for a bit. They said we would see this, so I guess that is hopeful. I will be doing a jig when we start seeing improvement. lol At least he is still sleeping with help of meletonin. without that, I would be a mess.