Is this Pandas? running out of hope?

[kimwal]

I really think my son is Pandas. He does not meet every criteria however I still believe they are still learning. Please tell me if you think it is

*Had strep at age 5 . Three weeks later LITERALLY woke up ticcing non stop and severe ocd.

* treated the strep with regular treatment but tics have not gone away.

*Along the years did one ivig treatment, no success.

* tried steriods for a couple of weeks. nothing

* tried gluten, casein, sugar free diet for about 3 mos. no success.

* He is now 15, ove rthe course of years have tried over 30 meds for the ts, ocd and adhd.

He is currently on 3 meds. now.

I still think he is Pandas even though the tics have not gone away. They do get worse with illnesses.

He tends to get sick ( catches) alot. Does not have much energy to be able to do physcal things. Yet very hyper!!!! ???

 

Don't know what to do now. Don't know a doc. around to treat Pandas. When I first brought this to a ped. years ago he laughed at me.

Our old neuro. did believe in this but he moved.

Our new neuro. said that even if he does have pandas there is nothing really to do about it???

What do I do.

He hascorpralia with his ts so this makes it all worse.

Running out of hope here...

thanks

[EAMom]

What antibiotics (type, dose, and how long) has your son been on? Just the one course at age 5? Did you follow up with a throat culture to make sure he cleared his strep infection? Did you do subsequent throat cultures to make sure he stayed negative? Have you cultured asymptomatic family members to check for strep carriers that might be re-exposing him?

 

Sometimes strep can "hide out" in the sinuses or other areas that won't be detected by a throat culture. Have you tried a long term (1-2 mo.) trial of full-strength antibiotics (Azith? Augmentin?) to see if that helps?

 

What dose of steroids did you use? Was he on antibiotics at the time?

 

How old was he when he had IVIG? Do you know the dose he received? was he on antibiotics at the time? Did he stay on long term anti-biotics after IVIG? which one and dose?

 

Have you done any type of immune workup? (there are lots of threads on this)

 

Where do you live?

 

One option would be to see Dr. Latimer (pediatric neurologist) in DC...she would likely want you to do bloodwork with Dr. Cunningham and if that is consistent with PANDAS then PEX might be an option.

 

What are the 3 meds your son is currently on?

[peglem]

Kimwal, have you had your son checked for strep recently?

[bmom]

EAMom,

I would like to pursue the immulogical work up. What tests do they do? Did the immunologist that you saw do these tests? Did you like him? We are fairly close so we could likely go to him. I would like to have my son tested as I think he has some immulogical issues.

[ShaesMom]

EAMom,

I would like to pursue the immulogical work up. What tests do they do? Did the immunologist that you saw do these tests? Did you like him? We are fairly close so we could likely go to him. I would like to have my son tested as I think he has some immulogical issues.

 

Blood work should be done for the following:

 

IgG, IgM & IgA

IgG subclasses 1-4

Pneumococcal Titers Test

Diptheria Titers

Tetanus Titers

 

These tests just scratch the surface. For a more in depth list of the tests visit this site: www.jmfworld.com

[EAMom]

EAMom,

I would like to pursue the immulogical work up. What tests do they do? Did the immunologist that you saw do these tests? Did you like him? We are fairly close so we could likely go to him. I would like to have my son tested as I think he has some immulogical issues.

 

I think our immunologist would be worth seeing. He didn't know that much about PANDAS per se but did do a workup to rule out an underlying immune disorder (see if we had another reason to get IVIG okayed, for insurance etc). Hopefully he is learning and he was interested enough to keep some of our dd's blood when we sent some off to Dr. Cunningham. He does know who Dr. Cuningham is and has a great deal of respect for her.

 

 

This is what bloodwork our immunologist ran on our dd (I don't know what all of these mean btw):

CBC (complete blood count)

pnuemococcal test titers

diptheria toxoid IgG ab

tetanus toxoid IgG Ab assay

anti-dnase b and ASO (both were really low BTW)

T & B Lymphs

General chemistry (checking liver as a precaution due to Azith.)

sed rate

IgA

IgG

IgM

IgG subclasses

ANA

C-reactive protein

Complement, Total

 

hopefully I didn't miss anything

[bmom]

Thanks EAMom, I think I remember you said that all turned out normal. Do you have faith that he read all the results right?

[EAMom]

also total IgE

[EAMom]

Thanks EAMom, I think I remember you said that all turned out normal. Do you have faith that he read all the results right?

 

well...we failed a lot of (if I am reading it right) most of her pneumococcal (prevnar) titers. A lot of her values were < 0.3 mcg/ml. On the lab report there is no ref. range listed. She had all her vaccines as a baby...in fact I think she even got an extra. The immunologist didn't think that the failed titers were necessarily significant since she hadn't had recent vaccinations. Really, to test them, we'd need to revaccinate and re-draw the bloodwork. I think different immunologists are interpreting the values differently. I don't know if anyone has seen what these titers are in a bunch of normal kids (who have had the typical baby vaccines.)

 

Unlike a lot of other pandas kids, our dd hadn't been an especially illness prone child. I think the cincher for her is that she doesn't exhibit the normal "sore red throat" when she does get strep (although she may get fever, vomiting....nobody ever did throat cultures for those), so she likely had a several undiagnosed and untreated strep infections throughout her childhood (until we learned about pandas in March 08).

 

Her younger sister (who may be a strep carrier) is actually more illness prone (ear infections, resp. infections)

[P_Mom]

EA Mom...did your daughter pass all the immunoglobulin classes...and sub-classes? How is she doing now post IVIG???

 

I have read the same about the s. pneumonia titers...and our immunologist said the same thing. He said he sees it all the time.....didn't feel it was of any significance. The Prevnar vaccine they get as babies for this had been found to be largly ineffective for children under 2...and that is when they give it....go figure.

 

We are going again on the 15th for second opinion just in case. We had slightly low total IGG and Igg sub-class 1. Again, immunologist felt it was not significant to treat. By other labs standards that I found....they were in range for all.

 

Take care.

[EAMom]

EA Mom...did your daughter pass all the immunoglobulin classes...and sub-classes? How is she doing now post IVIG???

 

Those were all normal. She's doing pretty well post-IVIG (we're at about 8 weeks now). There are still little bumps in the road, flashes of irritibility/anxiety/PANDAS...but overall I would say she is definitely better. Not 100%, but pretty good.

 

Her sister is sick today with vomiting/fever (she's going to the dr. tomorrow and also getting a throat culture)...so far PANDAS dd doesn't seem to be reacting which is good.

[P_Mom]

Good, indeed!!

[dcmom]

EAmom-

 

We are waiting on our immunological results.

 

Our infectious disease doctor at Georgetown said the same thing- she said they don't pull pneumo titers on normal kids to know what they should be. Has there never been a study on this? If that is the case, I guess some docs are treating this because of their gut feelings, rather than based on studies. (Which I am not necessarily against).

 

My pandas dd has never been prone to illnesses either.