peglem

Thank you for your response. You still have issues with flares, even after IVIG?? Dr. K told me that IVIG "was the cure". Is this dependant on how long the child went without treatment for PANDAS? If IVIG isn't 100% going to cure it, I am not sure it a risk worth taking in our case. We do have an appointment with Dr. B to get him on board as well, making him the third PANDAS specialist that we have been dealing with. Well my child's case is extreme and not "typical". She does have immune deficiency as well. It could be that she was left untreated for so long- IDK. I do hear about some children being cured by IVIG, we seem to need more than that.

My daughter will be 18 in a few months. It is believed this started for her in infancy, and like you, have no idea what baseline is. We had a wonderful 3 month period at the beginning of 2010 that I tend to use as a "how do we get her back there?" reference point. I have come to believe, at least for my child, that symptom management is what we'll have to settle for. It seems like each time we get something figured out and see improvement and growth, something else pops up. Right now she is getting IVIG (1.5g/kg) every 3 weeks. Two months ago we started a beta blocker and minocycline which has helped immensely with her most troublesome symptom of fight or flight episodes (usually fight,kwim?). Even with that, though, we do see flares that seem to respond to clindamycin and prednisone. Now her pediatrician (who is desperately trying to come up with some definite protocols for when we must transfer to adult care doc) wants to try putting her on a regular immune suppressant (like methotrexate) so we won't have to keep doing steroids. But, I realize that my child is a very extreme case and before I pursue any really lofty goals for her (like independent living), I'm trying to make sure that she will have a decent quality of life when her ol' mom isn't around to keep things nice for her. That being said, I think educationally and behaviorally all our kids can benefit from learning how to deal with OCD and anxiety.

I don't know what to advise as far as IVIG, but when we need to nip an episode in the bud (and who doesn't need that?), we do use abx to help w/ whatever might have triggered it, but we also use prednisone to slow down/halt the autoimmune reaction. Even with IVIG every 3 weeks, my child still has flares.

My child did the pneumovax challenge-2X. The 1st time their was almost no response, so vax was repeated and then we did see a response. @18 months later, those titers were low again, and the doc (local immunologist)wanted to revax (basically do another challenge). I declined doing the same thing again (which solved nothing, apparently), but we did get approval for IVIG based on immune deficiency. We had UHC insurance at the time.

We've had some relief w/ ibuprofen and valium. But, started a beta blocker @ a month ago and that has made a huge difference, and then we switched abx to minocycline (from zith) and that helped even more...but, started to flare again a week ago, so have added a 7 day prednisone taper and a 10 day course of clindamycin. Very little aggression/irritability yesterday and today. Before starting the beta blockers, I was giving way too much ibuprofen (and even then, just mostly preventing headaches), but have not had to use much at all with the propranolol (beta blocker) on board.

Thanks, Vickie!

The first 2 for my daughter were low dose- <0.5g/kg. She now gets 1.5g/kg every 3 weeks. But, she has an immune deficiency.

Mine gets IVIG every 3 weeks w/ no steroids either. But, my guess would be that steroids are given to ameliorate possible allergic reaction and to keep inflammation down. W/ High dose the inflammation part makes no sense to me because HD is supposed to be anti-inflammatory anyway, isn't it?

http://www.abc15.com/dpp/news/national/new-study-shows-relationship-between-kitty-litter-and-suicide-attempts-in-women Bolding mine.

My daughter is non verbal, so my info is conjecture from observing. At first I thought it was sinus trouble because she would pinch between her eyebrows. But then I noticed that she would only open her eyes to look if the object was upside down- or she'd tilt her head upside down to look if the object could not be turned. For the desktop computer she would use dvds to reflect the image upside down and look at that instead of the screen. She spent a lot of time covering her eyes, with them closed and not looking at anything. It may have been autoimmune inflammation of the optic mechanism (uvietis? retinitis? IDK) Sinus probs were ruled out by the ENT...could not get appointment to opthalmologist until next week- but the problem has largely resolved w/ propranolol and minocycline. I think its more the mino that did the trick, since we started the propranolol a few weeks before it and did not see improvement of that symptom until after the mino was added. Before that I had been giving a LOT of ibuprofen (like every 4 hours around the clock), which I hated, but it did seem to give her a little relief from the discomfort or pain and I had nothing else. For the last 5 days she's only had 2 doses of ibuprofen and one of those was for menstrual cramps. So I am hopeful this is finally an answer for us, although it seems like every time we think we have it figured out, along comes another stupid problem that makes us re-think everything.

You might want to go ahead and get an appointment with a PANDAS doc- most are booked months out. You can always cancel it if you feel you don't need it as the date approaches. But, if it turns out you do need it, you won't want to wait another couple months to finally get there.

Well, its been a week and the improvements are holding steady- a few blips, but so much improved! How's the augmentin working out?

The "old school" thinking on tourettes syndrome and OCD is that they are conditions that are exacerbated by stress and illness. It sounds like that is what your pedi thinks as well. Would your psychiatrist be willing to rx abx?

My daughter has very low IgA and has been getting IVIG every 3-4 weeks for over 2 years. When we started we used gammagard, but now use privigen. Her doctor ordered brands that have been treated to remove most IgA, but I'd still make sure your child is monitored very carefully for reaction.

Nancy, sorry to see that your daughter is having such a tough time right now. I am praying for her to improve. But, I wanted you to know that your minocycline post, w/ the study sites listed got me to do a little more research and give it a try for my daughter. We started yesterday evening and she got another dose in the AM and today has been the best day we've seen in probably 3 months. We've been dealing with fight or flight meltdowns w/ aggression against self and others several times/day for quite some time. Also, something wanky w/ vision (photophobia? distortions?) and migraines. The only ibuprofen I had to give today was this morning and really only because I was afraid not to. She spent the day with her eyes open and no meltdowns. Thank you so much- even if we only got this one day out of it, what a gift one day can be when things have been so bad! I have seen some reverting back to old OCD fixations that we haven't seen in a while, but maybe that's just because she's seeing things again!

Too funny!

I don't know what Hizentra is, but my daughter gets 1.5g/kg IVIG every three weeks and does pretty well on that. Her 1st 2 IVIGs, 2 years ago, were low dose though and they made her worse-headaches and inflammation.

When we first used zith it was very effective for us- we called it zithromagic. Several years later, not as effective as it used to be. We are staying w/ the zith (500mg every other day), but trying out a 10 day course of clindamycin once a month to see if we can get stability. What is happening for us is that the zith seems to be just holding something at bay (not sure what) for awhile, then we have a flare up and clindamycin clears it up, then zith keeps it at bay for awhile again.... Augmentin always causes bad yeast, no matter what precautions we take, so haven't used it much, although did just finish a course of amox last week (added to the zith) for a UTI and did not get yeast (yet).

Clindamycin usually clears my girl....temporarily!

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help. I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies." IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done. So, if IVIG does not restore "normal immune function" does that mean that there is some other immune system problem? My daughter gets IVIG every 3 weeks (1.5g/kg) and we do see immediate improvements- by the time the next IVIG is due we start regressing again. So, while it does seem like the auto-antibodies are some how edged out by the IVIG, they rapidly return once the dono-globulins begin to wane. Maybe your daughter still has an active infection? I'm not sure what "active" infection means. She still has frequent positivity for strep- but only on the rapid. She is currently being treated for a UTI, which was dx'd through 3 day culture- the dip was neg. But, there does seem to be something that is kept at a simmer w/ proph. zith and then flares every so often. I suspect its a sinus thing because it presents with photophobia and migraine. Treatment w/ clindamycin takes away those symptoms, until next time... We have turned her sinuses inside out looking for the culprit, but have found nothing.

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help. I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies." IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done. So, if IVIG does not restore "normal immune function" does that mean that there is some other immune system problem? My daughter gets IVIG every 3 weeks (1.5g/kg) and we do see immediate improvements- by the time the next IVIG is due we start regressing again. So, while it does seem like the auto-antibodies are some how edged out by the IVIG, they rapidly return once the dono-globulins begin to wane.

This from the Insel piece: I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help.

I found this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2837605/?tool=pmcentrez

My daughter has very low IgG4, low IgE, but also total IgG is low in addition to low IgA- all fall far below normal range. What I've read (and I've found precious little info) seems to indicate that those low in IgE and IgA are at greater risk for autoimmune disorders.

What I've seen on LabCorp, and any lab where we've had tests done is anything out of range is flagged, so just a little high or a little low would be flagged, as would any seriously out of range results.