PowPow

Is she on abx?

Risperidone . Not letting her get way, though it will be worse at first. Prayer. Virtual Hugs fron those who have been there.

If she cannot fall asleep in 15 mins or so, have her get of bed and read something boring, like a textbook, untill she feels sleepy. No electronics after dinner. This was the advice of our sleep doctor. Also read healthy sleep habits, happy child by dr weissbaum. Excellent advice in there, too, even for older kids.

LOVE IT, dut. Thanks for the laugh on this snowy, bad PANS day:)

We saw dr horng last spring. Great lady! Excellent choice going there.

This sheds some light, maybe, on those of us with multiple kids dealing with mental illness. Thanks for posting.

Can you repost? Link did not work.

My 7yo began with only tics, for a long period of time. We only decided to consider it a PANDAS symptom because we had two others with PANDAS. treatment with steroids and abx have eliminated the tics for months at a time, and then they have recurred a few times, each time remitting with steroids. Eventually, she did develop psych symptoms with her tics. Please consider this as a diagnosis for your son. We also have the adhd component as well, for two of our children with pandas. This was not present before pandas onset.

Where were you given that price t.anna?

My child had ivig 4months after pex. Symptoms improved dramatically post pex. Anorexis began very suddenly 4months later. Ivig helped, but slowly over a few months.

is your son HLA B27 positive? One of my pandas kids is and the other is negative.

A long syringe type device, just to keep iron off teeth.

I read about this from the HSLDA. please look up proposed bill 374 - ct general assembly HSLDA CT bill I imagine this may be a knee-jerk reaction to the Sandy Hook shooting? or maybe it has been in the works for awhile? No matter your political affiliation or schooling situation, when you have a child with serious psychiatric problems, this bill should give pause. Please try to imagine the consequences and potential fallout from someone who does not have a clue about PANS assessing your child?

double topic

no, mine are not- but thanks for pointing that out! another reason to avoid SSRI's......

Strawberry banana with a slight metal aftertaste. Give with Vit C for increased abssorption,so I give vit c gummies after to encourage cooperation. Use provided dispenser to prevent teeth staining.

Mine does! Ferritin is supposed to be 70,80 or higher(per sleep doctor) This is for a 5 yo. We have been giving 5ml of MyKidz Iron 10 twice a day since the fall. Just got it rechecked, but no results yet. Symptoms are much much better. We are now supplementing my 7yo who has a ferritin of 25 &symptoms.

Kathy N, this is great to read! my child (15) has been on cellcept now since mid December- do you think helps? I was not sure if I should expect improvement- or just to prevent exacerbation. She is actually doing worse, though mostly with depression and OCD thoughts- not as much of the stranger, neuro symptoms now.. Steroids and pex brought her from the no talking, wetting, "brain turned off" stage. Mind if I PM you for more info?

I cannot answer to the IVIG question- but I wanted to encourage you with a hearty, passionate voice on this-- if therapy is an option now- DO IT! go to USF if you can there are other children/adolescent intensive programs popping up around the country, I believe. Where do you live? go tot he OCD foundatino website and find a BTTI trained therapist. My children have done pex, ivig and everything else- (ok, no DAN doc, but everything besides that!) and once we got to the point you describe, appropriate therapy was the single most important thing to their recovery. We would have not gotten to that point with pex and steroids I am sure- but USF was excellent.

we see her, feel free to PM me

Ditto to both tired mama and pandasphilly on the logistical portion of pex. TOTAL NIGHTMARE, to arrange and I felt like I did all the work for it. However, pex was amazing for my girls.

Our sleep doc had us get MyKidz iron 10 for low ferritin. It was special order but not prescription. You can get it on amazon. Give with vit c and not with calcium products. Use dispenser with it to prevent teeth staining.

My children had it. It was very helpful, short-term. It was very expensive, about 30k. Insurance paid for it. However, this was in 2011. I believe it is difficult to get now. My daughters had it in washington dc. I would do it again, for a crisis situation, if available. Have you tried intensive CBT or steroids? These things were the most "bang for the buck" for us. Best wishes. Feel free to PM me.

When you did have this done? I tried to PM you, but I was having problems with it. Thanks

Iron definitely helps rls. Our sleep doctor checked for low ferritin, which has a wide acceptable range. She wanted it around 70-80 to help RLS, it was 40 or so. We are getting it rechecked this week, but movements are so much better.we have been using MyKidz Iron 10, at the docs direction since october.