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Couldn't sleep last night for all the guilt I am feeling. We are 10 days out and things seem to be getting worse by the day for ds. Yesterday we had rage and physical assault for the first time in 2 months. He spent most of the day being tortured by the thoughts in his brain and I think it finally just got to be too much for him. He is miserable and depressed again. He is begging me to do something to help him. He can't stand it and can't explain it and just stands there screaming "help!" over and over while I helplessly observe. It's not that we haven't been through this before, its just that this time I feel like I did this to him with the IVIG. If something positive happens a few weeks from now , we can look back and say it was worth it. But right now I'm in a dark place, feeling like, despite the best of intentions, I might have screwed everything up for him with no guarantees or hopes that things will get better. If your child is about to climb out of a deep well, do you throw him a rope watch him try to climb the rest of the way out knowing he might slip and fall back, or do you push him down to the bottom in hopes he might hit a springboard when he gets there and fly out of the well alltogether. I feel like I pushed him but he's not finding any springboard....

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I dont know the best or right thing to tell you.When I feel desperate I ask for help.I pray that god will help my son through whatever he is experiencing.Can you ask the md for some anti anxiety medications to get him through this period untill the IV kicks in?Sometimes anxiety causes many physical symptoms for our kids.Its just temporary It will pass.

 

You didnt dig the hole (well) that hes in and you have givin him ropes (IV) .Your doing what you know to be the best you can.I know this sucks I mean really its horrible ,stay strong .

 

Melanie

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Many who have had IVIG mention "turning back the pages". After IVIG, the child becomes worse,old symptoms that were long gone suddenly resurface, etc. In the keyword on the forum, you an search "turning back the pages" and I'm sure you will find references. Have you been giving Ibuprofen to see if that helps? What antibiotic is he on?

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Couldn't sleep last night for all the guilt I am feeling. We are 10 days out and things seem to be getting worse by the day for ds. Yesterday we had rage and physical assault for the first time in 2 months. He spent most of the day being tortured by the thoughts in his brain and I think it finally just got to be too much for him. He is miserable and depressed again. He is begging me to do something to help him. He can't stand it and can't explain it and just stands there screaming "help!" over and over while I helplessly observe. It's not that we haven't been through this before, its just that this time I feel like I did this to him with the IVIG. If something positive happens a few weeks from now , we can look back and say it was worth it. But right now I'm in a dark place, feeling like, despite the best of intentions, I might have screwed everything up for him with no guarantees or hopes that things will get better. If your child is about to climb out of a deep well, do you throw him a rope watch him try to climb the rest of the way out knowing he might slip and fall back, or do you push him down to the bottom in hopes he might hit a springboard when he gets there and fly out of the well alltogether. I feel like I pushed him but he's not finding any springboard....

 

so sorry you are feeling so helpless right now and your DS is struggling. i am sure it is terrifying to watch but don't beat yourself up! you will be his hero one day as he will improve. you did the right thing for him and even though the road is bumpy and scary and hard to travel down, the finish line is hopefully coming your way soon and things will be much, much better.

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Couldn't sleep last night for all the guilt I am feeling. We are 10 days out and things seem to be getting worse by the day for ds. Yesterday we had rage and physical assault for the first time in 2 months. He spent most of the day being tortured by the thoughts in his brain and I think it finally just got to be too much for him. He is miserable and depressed again. He is begging me to do something to help him. He can't stand it and can't explain it and just stands there screaming "help!" over and over while I helplessly observe. It's not that we haven't been through this before, its just that this time I feel like I did this to him with the IVIG. If something positive happens a few weeks from now , we can look back and say it was worth it. But right now I'm in a dark place, feeling like, despite the best of intentions, I might have screwed everything up for him with no guarantees or hopes that things will get better. If your child is about to climb out of a deep well, do you throw him a rope watch him try to climb the rest of the way out knowing he might slip and fall back, or do you push him down to the bottom in hopes he might hit a springboard when he gets there and fly out of the well alltogether. I feel like I pushed him but he's not finding any springboard....

I don't have experience with IVIG yet- but I just wanted to give you a cyber hug and know you are in my prayers!

Brandy

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we are 5 weeks post IVIG with Dr. K. The 1st 4 to 6 weeks are indeed ref to as suicide time for all involved. Its really hard to go thru the flipping of pages as Dr. K says. Hang in there. I know about the high dose 1.5gms/kg that its supposed to get better after 4 to 6 weeks of struggle.

Edited by sptcmom
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I know how hard you fought to get IVIG for your son. You did it because he was struggling so much and the struggles were unpredictable and he was not functional. You did not rush into the decision to do IVIG. Wasn't it your son that had encephalitis on the PET scan? The IVIG may have triggered this relapse, but you know it did not lead him down a new path. As you said - this is nothing you haven't dealt with before. Quite honestly, without IVIG you would have been dealing with it again, but perhaps just not at this time.

 

This has to be so difficult for you now. My prayers are truly with you. You and your husband are strong. This WILL pass. You need to keep him safe while it passes.

 

What does the doc say? Is there anything they can give him for symptoms? The goal right now is to keep him safe.

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Couldn't sleep last night for all the guilt I am feeling. We are 10 days out and things seem to be getting worse by the day for ds. Yesterday we had rage and physical assault for the first time in 2 months. He spent most of the day being tortured by the thoughts in his brain and I think it finally just got to be too much for him. He is miserable and depressed again. He is begging me to do something to help him. He can't stand it and can't explain it and just stands there screaming "help!" over and over while I helplessly observe. It's not that we haven't been through this before, its just that this time I feel like I did this to him with the IVIG. If something positive happens a few weeks from now , we can look back and say it was worth it. But right now I'm in a dark place, feeling like, despite the best of intentions, I might have screwed everything up for him with no guarantees or hopes that things will get better. If your child is about to climb out of a deep well, do you throw him a rope watch him try to climb the rest of the way out knowing he might slip and fall back, or do you push him down to the bottom in hopes he might hit a springboard when he gets there and fly out of the well alltogether. I feel like I pushed him but he's not finding any springboard....

wornoutmom, I am feeling the exact same way and we are 4 weeks out from IVIG. The first two weeks he suffered from headaches and nausea. Then the anxiety and rages began and have gotten worse, especially the last few days. I know there is still time left to see improvement, but this is so discouraging. We see Dr. B. again today. I don't even know what to say or ask for. I just thought I would be in a different place right now. I know he told us we could do a prednisone burst to ride out the "turning of the pages" Maybe that is something you can try. My son has been on 21 day tapers 4 x since January so I am trying to manage without it. I will say my prayers for you and you son and hope that we can all end this living nightmare very soon.

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Don't despair! The terrible flare-ups of old symptoms are tough to go through -- for the child and for the parents -- but we were told that they are typical -- apparently an inherent part of the healing process -- and that we should be prepared for them. In fact, as we've gone through the flare-ups, my husband has frequently remarked that he'd be more worried if nothing were happening at all, because that might mean that the treatment was not having any significant effect on our son's immune system. We are 9 1/2 weeks post-IVIG. Our first 7 weeks were full of a series of such flare-ups. Then in the eighth week we could see something good happening -- though it's still far from good enough, and we're still really, really nervous and scared...

 

Let's hope we can all survive the "flipping back" through all the bad "pages," and get to some GOOD ones at long last!

 

Tenacity

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Please know you are not alone in this. It is very scary to see your child get worse but like someone said...you know the IVIG is doing it's job. I think of it as "clearing the house"...it is going deep in the body to flush out abnormal antibody complexes...and if you are seeing things get worse it is working. I would be much more concerned if you saw nothing. After our first IVIG it was amazing what came out of the woodwork. I even remember once things had stabilized seeing another "rage " several weeks later. It only lasted a few hours but was so bad I had to leave so my child would not see me cry. It let me know the IVIG was still doing it's job. We treated him 8 weeks after the first and really so no real response. I think our new baseline had been reached. We are now 6 months out from our first IVIG and doing great. We even had a strep exposure last week and seemed to get through it well. The immunologist wants to do it again in August but I am not even sure we need it. My child is happy, calm, no tics, no anger, patient, and the list goes on. This morning he even apologized to me for running late to camp!!! We may revisit the dark place again but at least I know what works...IVIG

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i have not been through this yet...and should the time come...i hope others will pray for me and my ds..i am tearing just hearing your agony...

know that i empathize and am praying for you...

And look forward to hearing all of the good news that will be coming from you and others on this thread that recently did ivig...

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