changes in symptoms

[bubbasmom]

Anyone notice a 'change in symptoms' mid way? No worse No better, just different? My son is 4 weeks post IVIG, can't say that I'm very please with the results. Kind of seems like a waste at this point. But we have notice something. His primary symptom started off as severe rage. Severe enough to be on Risperidal. The OCD stuff, tics and whatever were more secondary for him. Probably some of the rage came from OCD, kind of a my way or the highway thing and when it didn't go that way we saw the rage. His tics, thank God, were only while he was sleeping (very pronounced jerking when he slept) an then the ever irritating knuckle popping. But I can live with that.

Now, the rage seems less, still happens but not as dramatic when it does and its shorter lived. But the OCD, OMG!!! So those of you that have dealt with OCD as the primary symptom know how controling that is of your life. He was going to school very well, now he's not, was going to bed on time, now there's always an 'excuse'. And his big thing is 'that's a waste'. Waste of money, waste of a drink that doesn't get finished, waste of time, very irritating to him.

So seriously here's the point I'm at, I'm having a big huge pity party!! I'm tired, frustrated, discouraged, and the thought of going through the holidays with this is BEYOND my scope right now.

Any ideas???

[faith]

could this be the 'turning back' that some have mentioned? maybe he is still healing and the symptoms start going backwards? dont' know, but something to think about. maybe others can give some feedback.

 

 

 

 

Faith

[thereishope]

It sounds like your child has a catch phrase too, huh? Mine did and I came across others that did too. My son had bad OCD. But you say the rage is better? My son's rage got better before the OCD got better so keep hopeful. Have you given Ibruprofen to see if that helps takes the edge off of the OCD? Also, Omega 3's are suppose to help with OCD as well.

[sf_mom]

So our son presented with mostly TICS, mild OCD, mood liability and AD/HD type symptoms. After his first IVIG, OCD, AD/HD and mood liability went away fairly rapidly... we definitely saw a migration of TICs until he became symptomless. On Oct. 28th he was exposed to strep just as his donor antibodies were starting to wane from first IVIG. The first thing we noticed was complaint of headaches and stomach aches (major symptom of strep), then the following week we noticed some mood liability, talkative, responding with 'WHAT' to everything I said, interrupting, then 48 hours prior to second IVIG treatment mild OCD behavior... inability to shut brain off.

 

So, in our case it went from AD/HD, to OCD, to TICs and reverse as he healed and creeping AD/HD, to OCD up to treatment again.

[Iowadawn]

Anyone notice a 'change in symptoms' mid way? No worse No better, just different? My son is 4 weeks post IVIG, can't say that I'm very please with the results. Kind of seems like a waste at this point. But we have notice something. His primary symptom started off as severe rage. Severe enough to be on Risperidal. The OCD stuff, tics and whatever were more secondary for him. Probably some of the rage came from OCD, kind of a my way or the highway thing and when it didn't go that way we saw the rage. His tics, thank God, were only while he was sleeping (very pronounced jerking when he slept) an then the ever irritating knuckle popping. But I can live with that.

Now, the rage seems less, still happens but not as dramatic when it does and its shorter lived. But the OCD, OMG!!! So those of you that have dealt with OCD as the primary symptom know how controling that is of your life. He was going to school very well, now he's not, was going to bed on time, now there's always an 'excuse'. And his big thing is 'that's a waste'. Waste of money, waste of a drink that doesn't get finished, waste of time, very irritating to him.

So seriously here's the point I'm at, I'm having a big huge pity party!! I'm tired, frustrated, discouraged, and the thought of going through the holidays with this is BEYOND my scope right now.

Any ideas???

 

 

Bubbasmom-

 

You are about 4 weeks behind us with the IVIG. Our sons sound very similar symptoms-wise. Also on Risperdal and a couple other drugs. Our boy is 10 1/2 and and an early onset case that was mis-dx'd. We were scratching our heads at the 4 week post-IVIG point, too. Is he or isn't he getting better?? We are able to confidently say we are moving in the right direction now. Right now we are cycling through a separation anxiety thing with "WHere's mom, why aren't you back (panic), you have been gone so long, YOU need to tuck me in, I don't want you to go.....???" Rage has been our biggest issue, but tics & perseverative (OCD) thinking were right up there. Overall he seems so much more like a 10 year-old. If you have any questions, ask away. We did have Dr. K put him on high dose abx because we just hadn't ever gotten the strep eradicated and his titers have been extremely elevated. Dr. K says he will work with our psych to ween him from the drugs once he has smoothed out.

 

Are you sure what you are noticing while he is sleeping is actually tics? Tics, by definition, disappear while sleeping. Could there be something else happening? Someone correct me, if necessary.

 

You will more than likely hit rough patches. What I can say is our rough times are not as intense nor as long-lived. Hang tough. I'm confident for you.

 

Dawn