Worse after IVIG?

[Priscilla]

My dd 8 had 1st IVIG 1 week ago last night. We stopped antibiotics 3 days prior. I have noticed 1-2 OCD behaviors disappear, but one of them has gotten more severe. She has been so tormented that we ended up in ER today to get an anti-anxiety med until being able to see Dr tomorrow. She is crying ALL day (every 10-30 minutes she has a breakdown) since yesterday. It just comes out of nowhere, then passes, keeps saying she wants to die, even threatens to jump out of the car. I can't stand it. Has anyone had a severe increase after IVIG, then got better. I just need some hope.

[Suzan]

First of all, I am so sorry you guys are going through this! HUGS to you!

 

Why did you stop the abx? Can you start them again? I don't have much experience with IVIG yet, even though we have done 2 they have been low dose. But I think the general rule of thumb is to stay on abx after for a longer period of time.

 

 

susan

[tapiash]

Behaviors were pretty bad about a week after ivig. Week 4 my son laughing again and outbursts minimal. Keep your hope. We had ivig yesterday and I already see an increase in behaviors

[Mary M]

Our dd12 had high dose IVIg June 14/15. She was on high dose abx prior, continued on augmentin 875 BID for 2 weeks after IVIg and then down to augmentin 500 once per day. Even a delay in the time abx are taken for her ramps up her symptoms. I would not feel comfortable if my dd was off abx at all right now even though she is finally doing well.

 

As for symptom increase post IVIg, we had four weeks of sheer misery after IVIg. Lots of turning back the pages AND totally new symptoms that we'd never seen. And the symptoms were full force challenges every day. SHe even had tics while sleeping.

 

Having been there....My heart goes out to you. I am still on high alert, never knowing if it could all surge back yet again. But, after week 5 we noticed a consistent decline in frequency and duration of most symptoms (and believe me our dd was pretty involved--showed almost every symptom). Post IVIg was very difficult for us. I can see it is for you as well. Please know, it does and it will get better. When you are living it, it is so hard to believe it is ever going to get better. But my dd is living proof that IVIg works. Her symptoms are not all gone (she'll be 8 weeks post IVIg on Wed this week) but they are so livable now. They don't interfere like they did, we see symptoms less frequently and when they do emerge, they are shorter in duration. There is light at the end of the tunnel, but it can be a very LONG tunnel. Have hope and keep us posted...

Mary

from Michigan

[cobbiemommy]

We are only at four weeks post IVIg and there are some strange goings on inside my son's body at the moment. For the first two weeks, he was doing extremely well, but then seemed to backslide after the third week. He is more defiant and defensive at the moment and still has most of his OCD habits, nail picking, and obsessing about video games. But, he is also more willing to go outside of the house, go on jobsites with his dad, and does not throw a huge temper tantrum if what he is doing is interrupted. We are going back to twice a day antibiotics to see if that makes a difference. Maybe, your child should be on prophylactic abx (at the least) for the time being. I feel for you because this has been an extremely stressful time for us as I am sure it has for you. Try to take care of yourself as well: eat right, drink lots of water, rest when you can. I'm sorry you are going through this, but you can be sure that everyone here understands and cares.

[Kristy S]

My dd had IVIG with Dr. K on Aug 4th & 5th. Dr K said she HAS to be on antibiotics for at least 1 year after IVIG..I'm curious why your ds has none.? My dd is worse too though. Tonight she will only sleep on the hardwood floor because her bed is too uncomfortable. I feel like I'm going crazy watching this madness, she won't sleep and now she won't even get in bed. She's crying intermittently all day long. I'm hoping it means that at least something is happening. I hope it would be worse to have nothing going on at all... Just trying to make myself feel better I guess. I hope it gets easier for you. This IS hard. I do believe in IVIG though, it's just not overnight at least that's what I keep telling myself anyway.

 

Kristy

[Priscilla]

we wanted to see what IVIG would do w/o abx, It would be hard to tell which was working. We did start her back on abx yesterday though to get her through all of her IVIG treatments. Sunday was as bad as it can get, couldn't go 10 min all day w/o a meltdown, anxiety, rage. My husband and I are both covered in scratches a bruises. Even went to ER to get anti- anxiety med. Yesterday was much better, only 2-3 meltdowns, less rage. She was even kind of manic happy at times. This morning the dog yawning set her off (yawning and anything touching her mouth or chin is her trigger now, can't even say "chin"). But other behavior have subsided, coffee table away from couch is ok, and we can touch her back and say "back" now. I will take that as some improvement. Lots of prayer and unwaivering faith will get us through. Thank you for your support. I will keep you posted for all the others considering/going thru IVIG. Thanks

[EAMom]

we wanted to see what IVIG would do w/o abx, It would be hard to tell which was working.

 

IMO, they work together.

 

It seems like kind of an expensive experiment (in both $$$ and time and emotions and stress) to try IVIG without antibiotics. I mean, if you're going to go through the trouble and expense of IVIG, it makes sense to give it every possible chance of success.

 

Plus, even if the IVIG does work initially without antibiotics, many folks find that getting another infection later on down the road (strep in particular) will set them back to square one, starting the wheels of pandas in motion again.

 

Plus, by stopping the abs just before IVIG, you are actually dealing with 2 variables:

1) effect of no antibiotics

2) effect of IVIG

 

In other words, you don't know if your dd's decline is because you stopped the antibiotics, or because of IVIG (turning back the pages). By maintaining antibiotics you are just dealing with 1 variable, the addition of IVIG.

[Priscilla]

I see your point, we were on zith that I didn't feel was working b/c she was getting progressively worse even before the IVIG. We are trying Augmentin now. She has improved since Sunday, still melting down, but only 1-3 times a day instead of every 10 min. Seems much happier in between as well. And as I said, some behaviors have disappeared. I have to credit that to the IVIG (and lots of prayer) b/c we just started abx on Monday. We still have 3 more IVIG treatments too. Then we will see about a possible VERY SLOW wean from abx several months from then. Its all experimental for all of us. I will keep posting.

[EAMom]

I see your point, we were on zith that I didn't feel was working b/c she was getting progressively worse even before the IVIG. We are trying Augmentin now. She has improved since Sunday, still melting down, but only 1-3 times a day instead of every 10 min. Seems much happier in between as well. And as I said, some behaviors have disappeared. I have to credit that to the IVIG (and lots of prayer) b/c we just started abx on Monday. We still have 3 more IVIG treatments too. Then we will see about a possible VERY SLOW wean from abx several months from then. Its all experimental for all of us. I will keep posting.

 

So you are doing 4 IVIG's right off the bat? What dose are you using? Most folks just do 1 IVIG (hoping that will be it), and then repeat if there is a relapse. The expection would somebody with a known immunodeficiency.

 

What dose of Azith. was your dd on and for how long? What dose of Augmentin is she on now? And how much does she weigh?

[Priscilla]

We started on Omnicef in April (250-300mg?) great results at first, tried to wean twice, symptoms would return. This was her pediatrician, he was not open to IVIG. She started to become resistant to Omnicef. We consulted w/ dr that has treated several cases and did RX IVIG. He started her on 500mg azith daily. Progressively worse over almost 3 wks of it. She has not responed well to azith in the past. So we stopped just before IVIG, symptoms were strong and worse than previous month but not as bad as April. No motor tics have returned since about 1st 6 weeks of tx (yeah) vocal tics still on an off but not very severe. The Dr Rx 4 treatments because in his experience patients have needed to follow up at least 3 doses for success. We did high dose 2Gm/kg only one day. Given over 8.5 hours. Some headache next day and vomit x 2, then controlled well w/ Motrin for next 2 days. She was 73 lbs at start, but now is down to 66 b/c of strict gluten, sugar free diet. Within 48 hrs of IVIG, 1-2 behaviors had disappeared. Then sat, 1 week to the day after IVIG, she had alot of meltdowns, into Sunday, but was controlling rituals more. So since Monday, meltdowns have decreased to 1-3x day. We started her on Augmentin 875mg BID Monday. As I said, this is experimental for all of us. Medicine is an art trying to be disguised as an exact science (I know this first hand as a Critical Care nurse). I am looking forward to being on the other side of this.

 

I see your point, we were on zith that I didn't feel was working b/c she was getting progressively worse even before the IVIG. We are trying Augmentin now. She has improved since Sunday, still melting down, but only 1-3 times a day instead of every 10 min. Seems much happier in between as well. And as I said, some behaviors have disappeared. I have to credit that to the IVIG (and lots of prayer) b/c we just started abx on Monday. We still have 3 more IVIG treatments too. Then we will see about a possible VERY SLOW wean from abx several months from then. Its all experimental for all of us. I will keep posting.

 

So you are doing 4 IVIG's right off the bat? What dose are you using? Most folks just do 1 IVIG (hoping that will be it), and then repeat if there is a relapse. The expection would somebody with a known immunodeficiency.

 

What dose of Azith. was your dd on and for how long? What dose of Augmentin is she on now? And how much does she weigh?