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10 days post IVIG


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I suspect "turning back the pages" may just be a metaphor for detoxing or herxing. In other words, when all those healthy antibodies flood the child's body, there is a massive die-off of strep/mycoplasma/viruses, whatever is in there creating problems. I had this discussion recently with another mom from this forum and she had learned about this from a very knowledgeable doctor. So if you think about it that way, when you see "turning back of the pages," what you want to do is anything that will help the body get rid of the exotoxins/immune complexes, etc. That could include epsom salts baths, bentonite clay, charcoal, exercise, lots of water, etc. This might also include minimizing stress.

 

I hope this helps. You are in my prayers. I remember what a rough time my son was having 4 - 6 weeks after IVIG; we thought it had completely failed. At 7 weeks, just as I had given up hope, we started to see some miraculous changes.

 

We are considering a 2nd IVIG, as he has backslid after getting 75% better, but if we do it again, I am definitely going to focus on detoxing his body following the IVIG.

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I am just wondering if there is any relation to the reaction our kids are presenting after IVIG to the prophylactic antibiotic they are taking post ivig?? It seems to me that the more I hear about the higher dosing of antibiotic after the better the child seems to do ( not that any are the same by any means). We were doing so great here, rages were gone and behavior was amazingly better- tics (both verbal and physical) were still both presenting and then 4 weeks post ivig we switched from the augmentin 875 twice a day to the script we were given to be on afterwards of augmentin 500 and we slid backwards slowly- more tics, more whiney-ness, some slight separation anxiety again- nothing alarming, in fact we felt it was just "turning back the pages" until wham last weekend fullblown rages and we were sitting at pre-ivig status just not as violent. Have an email into Dr K but still no response- saw our regular GP and she prescribed augmentin 875 twice a day again with a z-pak zithro for strep that she feels he was presenting with- so obviously in our case the augmentin 500 did not work he was deteriorating slowly after he began it and then caught strep 4 weeks later while on it. Have no idea where we are going to go now as far as the longterm antibiotic - since beg the higher doses on Monday we have no more rages again, but the ocd and tics are all back in full force.

I don't think my child is the only one who has experienced this with the augmentin 500 but jmho I would strongly suggest taking a look at the proph. dosage of antibiotic your child is on post- IVIG- I think this is where we went wrong with our son ) :

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You guys are just the best! Thanks so much for all your support and words of wisdom. I will definitely be re-reading this post over and over when my heart is heavy, and will be keeping my thoughts with those of you who are still struggling so far out from the IVIG, We have prednisone and risperdal at our disposal to use, I'm just hoping to not have to go that route. We are still on full strength Biaxin till the end of the summer (playing it "safe" per Dr T) so I would think we're covered in that area. Today we agreed to officially try to start the summer - which means no more sleeping the afternoon away on the couch and trying to stay active. It seemed to help. Then into the hot tub tonight for almost an hour - he is so much more relaxed. I think I'm going to have be a lot more proactive about structuring things for him for a while, but feeling a little less desperate than I was this morning. We'll see about tomorrow.....

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Hang in there! Post ivig is white-knuckle time for many of us! It took about 6 weeks until we were able to see some settling/leveling off with my dd. We are post ivig nearly 5 months and she is so much better. We (in the meantime) discovered we were dealing with Lyme's and Mycoplasma and have been treating with Biaxin and Minocycline and she is really improving. NOT out of the woods, but much improved. Stay strong, don't second guess your decision and move forward. Blessings!

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I am sorry you are going through this. We are 5 weeks today post IVIG. We have been doing Clonazepam to get through this rough time. I am worried about that too though because it can be addictive. Right now though we need something to help get through this. I am trying to look at it as the IVIG is working. Dr. K. told me if nothing happened, positive or negative, then it would mean that the IVIG wasn't working. I know these weeks are dragging, but we will get there.

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So after 5 weeks are you still in the "worse" category? As in worse than before the IVIG? I know "something" is happening because his vocal tics, which had virtually disappeared on hte Biaxin, were out of control yesterday. He kept saying "why am I doing this? oops -sorry!" all day. Now the vocals are the least of my concerns, to be honest, but embarrassing and annoying for him. I keep wondering how many people really have that "moment" Dr K talks about where the OCD/tics are just suddenly gone one day, vs. a more gradual fading away?

 

 

I am sorry you are going through this. We are 5 weeks today post IVIG. We have been doing Clonazepam to get through this rough time. I am worried about that too though because it can be addictive. Right now though we need something to help get through this. I am trying to look at it as the IVIG is working. Dr. K. told me if nothing happened, positive or negative, then it would mean that the IVIG wasn't working. I know these weeks are dragging, but we will get there.
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The OCD 'just' stopped for us after the third IVIG the TICS faded over A LONG PERIOD OF TIME. We are just now seeing resolution with TICS and it will be six month post his last treatment next week. Our son presented with TICs mild OCD so I don't know if that made a difference. AND, I also realize that not everyone has had a similar experience.

 

Remember we did see flairs of stuff that lasted days, then a day, then hours, then minutes, etc. We have kept our son on higher dose antibiotics (we discovered this was working through trail and error) and we are now following more of the Lyme protocol with respect to antibiotics with a combo of Azithromycin/Omicef. When we changed up antibiotics about a month ago he just shed his remaining mild TICS over the last 30 days. Mood liability has picked up but I attribute this to herxing.

 

Hang in there its a long process and I look forward to hearing fantastic news of recovery.

Edited by SF Mom
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Some days I think it is a little worse, some days I see things resurface that I havn't seen in a while and some days I think it might be getting better. I'm sorry, I cant' be more helpful. I'm just waiting for these next few weeks to FLY BY.

 

So after 5 weeks are you still in the "worse" category? As in worse than before the IVIG? I know "something" is happening because his vocal tics, which had virtually disappeared on hte Biaxin, were out of control yesterday. He kept saying "why am I doing this? oops -sorry!" all day. Now the vocals are the least of my concerns, to be honest, but embarrassing and annoying for him. I keep wondering how many people really have that "moment" Dr K talks about where the OCD/tics are just suddenly gone one day, vs. a more gradual fading away?

 

 

I am sorry you are going through this. We are 5 weeks today post IVIG. We have been doing Clonazepam to get through this rough time. I am worried about that too though because it can be addictive. Right now though we need something to help get through this. I am trying to look at it as the IVIG is working. Dr. K. told me if nothing happened, positive or negative, then it would mean that the IVIG wasn't working. I know these weeks are dragging, but we will get there.

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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.

Since the IVIG I have not been able to keep my son well. So I guess it's not even getting a chance to work. At our trip to Dr. B. on Thursday he could tell he was starting another sinus infection, not to mention the day before my son spent the day with his best friend who now has strep! We left with new antibiotics, blood tests for the family, lyme tests for him. We're doing things a little backwards, but the IVIG was done on sort of an emergency basis. Dr. B. assured me that the IVIG will work, it's just going to take longer. To top things off, we literally drove into a tornado on the way home. Lucky to be alive, but still feeling like the dark clouds are hanging over our heads.

 

Wornoutmom, I hope during the weekend things turned around and you are seeing some improvement.

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Thank you to all who have replied and given support and well wishes. DS overall had a pretty good weekend. We did have him on a nicely scheduled and detailed diet of steady entertainment that undoubtedly distracted him from the dark side. Time will tell, we remain hopeful!

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