Third IVIG --symptoms cycling in and out faster

[mom24]

So we are a few weeks off of our third IVIG. DS was doing great, but seasonal allergies seem to have kicked in and I think that he may have caught a bug also when he returned after IVIG. He was doing so well that we took him off of cipro (prior to this). He was still on Clindamycin though.

 

This is what I am noticing with his symptoms: He is good in the mornings, but as the day goes on school reports that he is getting "silly, hyperactive, and is clearly in a fog. Yesterday I got the call that I needed to pick him up. He was curled up in a ball on the bed in the nurses office no affect whatsoever. They were concerned about his motor skills (getting down the stairs safetly and the brain fog which was painfully evident---he has been having trouble since last week). His voice was also failing and eventually he stopped talking for a couple of hours (this was a first). 3 hours later he was "back" punchy, not "flat" and playing better than ever at his piano lesson. So I am finding that the peaks are high and the lows are low, but the difference is that he seems to be cycling in and out of this much more rapidly (and at times more severely) than before IVIG. Has anyone else seen this?? I am hoping that this is a good sign. The transformation was amazing.

Please excuse the rambling. I am very frustrated, but hopeful :-)

[mom24]

ANY feedback would be really helpful:-)

[EAMom]

So we are a few weeks off of our third IVIG. DS was doing great, but seasonal allergies seem to have kicked in and I think that he may have caught a bug also when he returned after IVIG. He was doing so well that we took him off of cipro (prior to this). He was still on Clindamycin though.

 

This is what I am noticing with his symptoms: He is good in the mornings, but as the day goes on school reports that he is getting "silly, hyperactive, and is clearly in a fog. Yesterday I got the call that I needed to pick him up. He was curled up in a ball on the bed in the nurses office no affect whatsoever. They were concerned about his motor skills (getting down the stairs safetly and the brain fog which was painfully evident---he has been having trouble since last week). His voice was also failing and eventually he stopped talking for a couple of hours (this was a first). 3 hours later he was "back" punchy, not "flat" and playing better than ever at his piano lesson. So I am finding that the peaks are high and the lows are low, but the difference is that he seems to be cycling in and out of this much more rapidly (and at times more severely) than before IVIG. Has anyone else seen this?? I am hoping that this is a good sign. The transformation was amazing.

Please excuse the rambling. I am very frustrated, but hopeful :-)

 

was it HD IVIG?

 

I've heard other say acting silly and hyper can be a sign of yeast. Maybe others with personal experience will know more.

 

Also, has he been tested for tick borne diseases? Dr. Swedo said if IVIG's don't work (or maybe it was that the child relapsed quickly) to check for Lyme.

[Mary M]

Our dd was "worse before better" post high dose IVIg #1 and IVIg #2. Could what you are seeing be the "famous" turning back the pages?

 

The piano element struck me as during exacerbation my piano playing dd could not make music of any kind, simply could not coordinate her fingers to play and then 6 weeks post IVIg #1 sat down and played beautifully. It was quite remarkable...and interesting that two kids could share such a very specific experience of this disorder.

[twoplusone]

I would definitely give some ibuprofen.

 

Here is what I saw in the first few infusions- there would be a worsening and then he would get better. Yes I saw this happen more rapidly with each infusion, however the highs and lows were not as far away from each other so not as steep a roller coaster ride if that makes sense. Then, it was just improvements and evening out of all his symptoms and normalcy. Sweet, sweet normalcy.

 

If it is happening each day by the afternoon it sounds like he is tired and just can't hold it together. I might think about shortening his school day? This really helped my son. But then it just got so hard that we pulled him out. It was almost as if he needed all of his energy to recover. Just my thoughts. I began to think of my son like a rubberband. He would stretch far away and snap back (the highs and lows) and after being stretched all day or across the days he can't hold his shape any more. How many times could he be stretched before he didn't snap back? Taking the demands off of him really helped him heal in my opinion.

 

Penny

[mom24]

I would definitely give some ibuprofen.

 

Here is what I saw in the first few infusions- there would be a worsening and then he would get better. Yes I saw this happen more rapidly with each infusion, however the highs and lows were not as far away from each other so not as steep a roller coaster ride if that makes sense. Then, it was just improvements and evening out of all his symptoms and normalcy. Sweet, sweet normalcy.

 

If it is happening each day by the afternoon it sounds like he is tired and just can't hold it together. I might think about shortening his school day? This really helped my son. But then it just got so hard that we pulled him out. It was almost as if he needed all of his energy to recover. Just my thoughts. I began to think of my son like a rubberband. He would stretch far away and snap back (the highs and lows) and after being stretched all day or across the days he can't hold his shape any more. How many times could he be stretched before he didn't snap back? Taking the demands off of him really helped him heal in my opinion.

 

Penny

Thanks everyone. I really appreciate the feedback.

 

He did much better today(did not need to come home even with his teacher absent). The difference, I think, may be that the school nurse and I decided to keep him in during recess. He is VERY allergic to tree pollen which happens to be terrible here right now. I also think that he caught something post IVIG-came home and told me his classmate had strep his 1st day back . It probably doesn't help living with a little brother who has Myco #'s in the 1600s. We will continue to monitor. We have decided to start allergy shots and will do so this week.

 

I must say that tonight has been wonderful and it feels like DS is back much more today!! That being said I know that we have to take it day by day.

 

Thanks for the thoughts on Yeast also. We treated for that quite a while ago with a DAN. I think I will ask if we can re-visit the Nystatin (although I do give him high potency Floristar 1x a day) :-)

[Iowadawn]

So we are a few weeks off of our third IVIG. DS was doing great, but seasonal allergies seem to have kicked in and I think that he may have caught a bug also when he returned after IVIG. He was doing so well that we took him off of cipro (prior to this). He was still on Clindamycin though.

 

This is what I am noticing with his symptoms: He is good in the mornings, but as the day goes on school reports that he is getting "silly, hyperactive, and is clearly in a fog. Yesterday I got the call that I needed to pick him up. He was curled up in a ball on the bed in the nurses office no affect whatsoever. They were concerned about his motor skills (getting down the stairs safetly and the brain fog which was painfully evident---he has been having trouble since last week). His voice was also failing and eventually he stopped talking for a couple of hours (this was a first). 3 hours later he was "back" punchy, not "flat" and playing better than ever at his piano lesson. So I am finding that the peaks are high and the lows are low, but the difference is that he seems to be cycling in and out of this much more rapidly (and at times more severely) than before IVIG. Has anyone else seen this?? I am hoping that this is a good sign. The transformation was amazing.

Please excuse the rambling. I am very frustrated, but hopeful :-)

 

 

Yes, to the rapid cycling symptoms. We have never quite known what we will get after the ivig's, though, as we look back the rapid cycling (and we mean rapid) isn't near the problem with the ivig's now. He use to change into this obnoxious, drunken sailor, in-your-face and I'll just take you down and spit in your face type behavior. Bleck. He seems to come out of the IVIG's a little less bumpy than before. I did get the call from the principal a few days after the last ivig. He had bolted out of the class room to go to the principal's office. b/c a group member had cropped off the legs (so it would fit) to his addition to a poster the group was making (he's 13!) He got there and boiled and then got very aggressive with some teachers whom had followed him down the hall. He then went into a crying jag crying on the principal. From the time he bolted to the time he was able to get back in class on an even keel--about 10 minutes. We have had the weird, maniacal Jack Nicholson behavior or TiGGER bouncy---whoo--whoo-who-whoooo!!! Only to turn and be staring at him with a knife raised in his hand because we looked at him crooked. HAng in there. Sounds trite, but the alternative is to bail out on the rollercoaster ride--and that ain't pretty, either!! Dawn

Edited March 15, 2012 by Iowadawn