Starting this journey after visit with Dr. Latimer with a couple of questions

[Mom23boys]

We are on this road I think, unfortunately. My sister's 3 children have PANDAS (diagnosed by Dr. Latimer), all to varying degrees, and all thankfully completely well! We have had our head in the sand because our oldest has primarily tics. In the last 18 months or so they have worsened (becoming full blown chorea with facial grimacing and hand movements). He has also picked up some OCD behavior which is fairly mild - like needing to wash his hands after he eats. Otherwise, normal, healthy, well adjusted 14 year old with strong, supportive peer group. No issues in school at all and no behavior issues at all. In fact, Dr. Latimer worried he was almost "too perfect" - a type of OCD.

 

Our youngest also was diagnosed by Dr. Latimer in the same visit (our middle child is 12 and has apparently missed this genetic lottery!). He also has milder tics (eye blinking, sighing, chin thrust, etc.) which are pretty constant but don't bother him at all (he just turned 10) and don't bother his friends either. Our major worries with him are anxiety related. While I thought he "just had tics", I was astounded to see all of the other things on Dr. Latimer's intake form that he has had or currently has (all OCD/anxiety related): fear of choking, fear of germs, fear of food contamination, nighttime fears, inability to sleep alone, urinary frequency, etc. It was very eye opening! He told Dr. Latimer the tics didn't bother him but "I worry a lot about a lot of stuff". He is very thin (always has been) and eats well but has a BMI of 10. He has started the fear of choking thing again and examining his food (strawberries to be sure they don't have bruises, takes a while to pick out which donut he wants because he has to look at them carefully, etc.) From what I have seen from my sister's kids, very PANDASy behavior. Needless to say, we don't need this to spiral into a situation where he won't eat.

 

Dr. Latimer diagnosed both of them with post infectious OCD/tics/anxiety. She said right at first she didn't see IVIG in our future, which I am crossing my fingers about (2 of 3 of my sister's children had it). She wanted them both to have the Bicillin LA shot for 3 months and have titers done. Titers are back and not terrible - one has an ASO of 400 and an Anti DNase B of 210. He is the oldest one. He did, however have titers and a Cunningham panel done 5 years ago and his titers were much different: ASO still elevated at 466 but Anti Dnase B 1:1920 with negative throat culture. His Cam Kinase was 176. The other one (youngest) has really low titers: Not sure of the ASO but his Anti Dnase B is 93.

 

So a couple of questions:

 

1. With the low titers of the youngest one, do we need to explore more of an autoimmune route? It seems to me, even though we are still giving the shot, that he may not have an infection but his immune system in overdrive is what is doing the damage. Is this possible?

 

2. With the oldest, how do you determine if your child has actual Syndeham's Chorea? My nephew had chorea and has to be on an antibiotic til he is 18 because of it. Are the positive chorea signs of facial grimacing and hand flicking enough (plus his Cam Kinase of 176 was high PANDAS borderline SC). Is this a clinical diagnosis or are there more tests for it?

 

I am sure I will have more questions as I plod along. . . . Thanks for your input!

 

 

[reactive]

Did Dr. Latimer have an opinion on that?

Neurologists should be able to tell the difference between tics vs chorea movements

I have video of my son in exacerbation, one video showing more chorea-

Chorea is more rhythmic...hard for me to explain...but would be a clinical diagnosis I think

[MomWithOCDSon]

A class chorea symptom is "piano playing." Have the child stand with his back against a wall, close his eyes, and hold his arms straight out in front of himself, chest height.

 

If his fingers twitch and move in a motion similar to someone playing a piano, it may be chorea. I'm pretty sure there are some YouTube videos on the topic you could reference for comparisons.

 

As for the immune dysfunction versus infection, yes, I would think that's entirely possible, but that's something Dr. Latimer should be able to speak to, I would think.

[Mom23boys]

True. But Dr. Latimer is not someone you pick up the phone and call. Even though we saw her a week ago, we are supposed to address all questions to the portal, for a charge - and this is after flying to DC with 2 kids and paying her out of pocket $$$$ for much less than our allotted appointment time not more than a week ago . . . SO I am going to try to navigate this myself a bit and address only necessary questions to her. Thankfully my sister is a doctor and probably knows as much as Latimer does as she has lived it with 3 kids

 

Sorry for the vent but called today to see if Flonase prescribed by pediatrician today was OK and I was told to direct it to the portal for a charge . . .

[nicklemama]

My son has been on Flonase for several years. It's perfectly fine to give. Adding Flonase to his treatment has stopped all the sinus infections which cause flairs.

[MomWithOCDSon]

Just to ditto Nicklemama, my DS has also been on Flonase for years; it works wonders during allergy season and doesn't interfere with any of the other interventions.

 

Save your money . . . forget the portal on this one!