adkmom

Our son sees Dr. Jones. I sent you a PM.

We didn't get that far into the discussion about dosage. But the doc was calculating the cost of IVIG based on my son's weight and amount that would be needed. Maybe others here have dealt with dosage levels.

Hi Laure, Thanks. still at it! not as severe symptoms but just can't get the 100% mark. Lyme doc agrees but pandas doc suggesting. We're doing 1 more shot at Azith. and Augmentin to see if it helps but then we need to start discussing IVIG seriously. Lyme seems to be cleared out. But autoimmune stuff still remains. where are you guys at? how's sophie? darlene

Were his symptoms prior to IVIG real disabling? Or did the antibiotic treatment just not work? I've been told by Dr. B to look not at the severity of symptoms for determining the use of IVIG but on the length of antibiotic treatment and its effectiveness. thanks for responding!

Hi everyone, Haven't been on the forum in awhile. But still (1 1/2 years later!) fighting this for our DS5. Dx PANDAS and Lyme. The Lyme seems to be clearing but the PANDAS symptoms remain. Many are gone...but OCD, some tics, ADHD, anxiety/fear are still there. IVIG has been recommended...Based not on the severity of the symptoms but on the length of treatment. Our dr. said that his concern is that the symtoms can (not always) get worse. If it's not dealt with now, a few years from now we could be looking at OCD that is more severe, along with other symptoms. And that's even more challenging to fix. Has anyone done IVIG with a young child? what was your success? lots of side effects? Thanks once again..to everyone for your guidance! darlene

Hi Everyone, Our ds5 recently started a new tic...pulling his lower eyelids down quickly and rolling his eyeballs upward (if you can visualize). he doesn't do it constantly but when he does it, it's very creepy looking. If anyone else has experienced this, would love to know. It's scary looking. Also, started swiping his body from feet to head with both his hands. Thanks everyone, as always! Darlene

We frequently find any time a change in meds or dosage, his cheeks turn bright red. Not sure if it's a rash coming out or something the meds are doing. But it disappears within a day or so.

I know this all too well. I have a ds5 dx with pandas and lyme (suspected Bartonella but unsure). However, it did not start with the rage/frustration (in our case). There was a sudden onset of tics and what we now realize was mild OCD behaviors. My son had strep but none of the symptoms of it. His rage/anger has subsided greatly after antibiotic treatment (he is also on ADHD meds which have helped)

What great news! I remember us chatting from the very beginning when both our kids were dx in November. It's been such a year and I can so relate to all the struggles you mentioned (with yelling and fighting in the family!) So exhausting! But you've been such a determined mom to get the right help for Sophie and it's paid off! Colin is still ticing and recently a psychiatrist said "well if it doesn't bother him, it's fine, right?" I told that to Dr. B and he chuckled and said, "yeah, but kids don't just tic, we need to stop it." So, your "Keep pushing" statement hit home with me. (During an evening when I thought maybe I'm making too much of this and should just let whatever it is be.) In relation to a lot of other children, Colin is doing pretty well, but he's not 100% and that's what we're all striving for, right? To get our kids COMPLETELY better. So, thanks for your encouraging words, you give us all hope! Darlene

Go to your forum name (on top right of screen), click on messenger, you should see your storage amount on the lower left of the screen. if it's full, i believe you just delete individual messages there.