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adkmom

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Everything posted by adkmom

  1. Our son sees Dr. Jones. I sent you a PM.
  2. 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.
  3. 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
  4. 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!
  5. 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
  6. 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
  7. 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.
  8. 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)
  9. 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
  10. 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.
  11. 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.
  12. 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.
  13. Our child psychiatrist said that recent studies indicate that tics are NOT made worse by stimulants. She said the reports are mixed. My son has tics (from PANDAS) and takes Metadate (30mg daily) and it has not increased the tics. Every child may be different, not sure. good luck. adkmom from lyme board
  14. Hi everyone, Haven't been on the forum in awhile. But this is our 1 year mark since DS5 was diagnosed with Pandas (Lyme dx in Feb.) In desperation to control ADHD symptoms (that weren't improving on meds), I took him off all 3 antibiotics for 10 days and his symptoms disappeared. Less agitation, irritability, happier, but his tics remained. Anyone else see improvement in symptoms when OFF antibiotics? It doesn't make any sense. For those struggling with ADHD symptoms....I've found his med helps minimize the symptoms and control them BUT during certain periods of the month, the med is less effective. The docs says, the med will help but if Lyme or PANDAS is active, those symptoms will still emerge. Even after a year, this is so confusing! Darlene
  15. Laura, Think your mailbox is full. Been trying to reach you. darlene
  16. Anyone know of LMD in Indiana who treats children?
  17. Live stream is to begin at 10:30 today. http://www.ilads.org/lyme_programs/lyme_events_video.html#page=page-1
  18. Can't seem to access my list...just wondering if anyone knows of a LMD treating children in Maryland? Thanks. Darlene
  19. Hey Laura, So glad to hear your news! I'm confused though...Did Igenex tests show negatives for those infections...and the ART doc run a different type of test? When do most kids move onto to try ART? I'm completely clueless in this area! I've been told that we're only on Lyme treatment full force (treating Bartonella as well as Lyme) for 4 months...not long enough to elimiante all the symptoms...so we're waiting. We have started ADHD meds with great reluctance and it's improved those symptoms but now, it's confusing and I need to check with docs about how we can still monitor progress with Lyme treatment if ADHD meds are eliminating (or masking) his key symptoms! Colin has never really had OCD issues, is that what ART is more for? Darlene
  20. Just wondering if anyone has done food allergy/sensitivity testing for their PANDAS child? Tics come and go. No sign of infections or sinus problems...but wondering if I should investigate food testing? I know some of the kids react to Food dyes but would like to know for sure if that could be triggering symptoms. Thanks everyone. Darlene
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