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besides resting for a day or so post central line removal to prevent bleeding, there is no recovery from pex. you are not immune-suppressed, so school should not be a concern more than normal infectious concerns. best wishes to you, pex was so helpful for my children!

my daughter started with aggressiveness, major grouchiness, sudden sensory issues, and seperation anxiety after strep throat. about seven months later "real" ocd started and she cultured positive for strep again at that time. another daughter started with overnight onset with her more typical pandas. tics & "chorea-like" movements started headbutt months later I am trying to say that it can present differently. both girls have responded to pandas tx: abx, steroids, ivig and pex and now finally, cbt/erp, now that the massive assault of pandas was defended/stopped by all the medical steps we took.

This is great, great news, Jaco! The steroids are so helpful to my child, too! Maybe ( i am totally extrapolating here) the hashimoto's will eventually calm down. Maybe the IVIG is stirring up your immune system a little bit and your thyroid is reacting. My daughter had a negative immune response (hemolytic anemia) to IVIG, but in the end I think it was very helpful. This is such happy news. Out of curiousity, are you getting high doses of IV steroids?

so are they finding high or low homocysteine with this mutation? I ask as I have antiphospholipid syndrome (the acquired thrombophilia mentioned) & I do take aspirin daily & lovenox when pregnant (aspirin , too) One of my PANDAS daughters was found to have high homocysteine . both were negative for the antiphospholipid antibodies, though they can vary and are not always present. Thanks for including all this info, NancyD. I believe the child with the homocysteine was checked for this mutation and was normal (none found)

Can you pm browneyesmom?

The ivig antibodies only last a few weeks in the system. Pex only removes certain antibodies, so you are not compromised after, your immune system is still functioning. Honestly, pex was so helpful for my kids, compared to ivig, at least in immediate effect, do not be afraid of it.

No, I do not think so. In fact, I think only a relative few get to pex. That could be due to insurance, though.

Pex is different depending which doc. In DC, it is a three day stay in hospital not always ICU, with a central line. Three pex is only a few hours as day, for three days, but you stay in the hospital. some docs do outpt pex, over a few weeks.

2 of my PANDAS kids had tonsillectomies (one pre pandas- one after onset) The "after-onset" surgery seem to make no difference, tonsils cultured clear for strep, lyme and something else. IVIG was over a year post all that! You are not crazy at all! get those sick tonsils out and then move on to PANDAS stuff. That is my opinion!

they are doing steroids for the IVIG- i think it is a great idea (did it for one of more girls) but I did not know they were doing it much now. AWESOME news on the IVIG approval, kimflow! So SO happy to hear it!

You did not ask me, but my daughters' tics & chorea-like movement (different daughters) were helped immensely by pex. My younger child's (different than the 2 who had pex) vocal tics improved (and the effect last twice for 5-6 months) after steroids for a month. The tics returned (along with psych symptoms) after several months. She just did her third steroid month. tics are much better- still present but hardly noticeable. They DID get worse this time at about week 2. Much better now.

There is a kids PANDAS facebook page, but we do not let our kids fb. There is also a kids pandas website- started by a boy with PANDAS- my daughter has made a few internet friends from that site. pandas kids site

Pming you

Here is a link to the pediatric Riluzole trial. It was completed already. My child did not qualify, due to Lyme treatment at the time (IV abx) but I was able to get our psychiatrist and then our PANDAS doc to prescribe it. NIMH peds riluzole trial

I have not read the entire thread, but I wanted to say that we had positive responses for two children to clomipramine (anafranil). One had.a horrible response to prozac and luvox, though at high doses that I now know were adjusted up way to quickly. I would encourage people to consider it as an option for some kids. We also think rilutek was helpful for our child-not an ssri, but possibly may work as an OCD med.

I just want to second (third, fourth?) the opinion to go to Dr Latimer. She will help you. His age will not be an issue with her, from what I know. I know it is expensive & you will not get much reimbursement from insurance- but I am going to be frank here- you are not going to get much treatment for your son without a good PANDAS doc. We are also in VA and I am not exaggerating, Dr L has saved my family. Literally. three kids treated by her & without her, 2 of them wouuld have been institutionalized. It kills us financially, but you cannot put a price on what she has done for my kids.

Do you have a PANDAS doc? Have you tried zithro or augmentin as a longterm treatment? I know this is horrible for you and him. Steroids from our PANDAS doc helped when my girls hit this point.

ptcgirl: my child was also treated for lyme et al and her physical symptoms improved but psych did not. In fact she worsened (maybe coincidentally). IVIG did not seem to help, though maybe it was a slow improvement- we saw a difference 3-4 months later (though that was one month after pex, so we attributed it to that) She worsened again, with good improvement a month after repeat pex a few months later. That improvement did not last either. We are seeing some improvements now, possibly due to Augmentin 100omg XR BID. Give the IVIG a shot. You will not know until you try.

My child had severe intrusive thoughts, especially at nighttime. She was 11 at the time. They were the first symptoms to disappear after pex. They were horrible. I am so sorry your child is suffering this way. Another child of mine had intrusive fleeting thoughts of knives. They regressed after steroids (iv for asthma and pneumonia). Please know you and your child are not alone.

Maybe I am missing the point of the AOA post, or maybe the point of the title. I am very grateful to Dr. Insel for his open mindedness and willingness to write about our kids. Edited for my terrible typing skills;)

Pandas psych recommended magnesium for tics to us.

Have your tried risperdal?

How old is your son? Do you have grandparents that he could stay with?

I hope everyone is paying attention to this! I am sure many of us have varying political leaning, but we can all agree on trying to get our kids better and our ability to be in charge of their medical care is the only way most of them will get better. It is the truth. Please, if you live in CA, pay attention to this! I live on the "right" coast, both geographically and politically but I am watching this closely. We all need to pay attention to our rights, as they are very quietly eroding, especially our rights as parents. I do not even know where I stand on the vaccine issue. I do not want to vaccinate my next child, but honestly, I am afraid of the backlash of my family doctor. I DO believe he has the right to refuse care to me for that purpose, just as I have the right to seek care where I want and how I want. I just really like him... Before I get too off-topic, THANK YOU... FORMEDBRDS for posting this!

One child was given Gamunex and the other Privigen (privigen was done at the hospital and Gamunex was done in Dr office). We actually understood that Privigen was more of a "Standard" product and the Gamunex was a higher quality (more pure processing) than Privigen. So, now that I read mom md 's comment, I wonder how both received opposite information. The child who received the Privigen developed an autoimmune hemolytic reaction post infusion, however, that was most likely a reaction she had to IVIG versus a reaction caused specifically by the Privigen. Gamunex is used by a different large, respected hospital we also sought treatment at and was their recommendation, as well.