Pandas or TS? or both? newbie needs help...

[norcalmom]

try not to be overwhelmed. One step at a time. its lots of new information. there is alot of info you don't need to know about on this site - it varies by child. You don't have do, or know, everything at once. Strep tiers - done by your pediatrician (ask for something to numb your daughters arm before the blood draw, this will make the future ones easier). And the cunningham test. If you live near a pandas specialist doctor, maybe get an on the books for an appointment.

 

After u get the kit for the cunninghams test, post again if you have any questions, we will walk u thru it! There are intructions, and most labs ask that u have the blood drawn for it in the morning so it can be fed exed (ours wanted blood drawn before 11:00am).

 

I spent too much time being afraid of what the answers might be - it froze me. don't be me! act sooner than later, and you have a great opportunity to get her back on track with antibiotics, if she even has pandas. Personally, I was hoping for a pandas dx, I was afraid if ds didn't get one, I couldn't do anything to help him. ds had low strep titers, and the they were taken months after his first episode. first episode that I noticed, although in retrospect, he probably had one when he was 5 and 7 too. maybe if I had done something back when he was 7 I could have avoided everything he went thru when he was 11.

[EAMom]

Yup, I agree. Start with Strep titers and the Cunningham test (do together, so there is only 1 blood draw.) And, make an appt. with an experienced PANDAS/tic doc (eg Dr. Latimer if she isn't far from you). That way you can have the Cunningham results (may take 1 or even 2 mo. for Cunningham results) by the time your appt. takes place.

 

I would also do throat cultures on family members to check for carriers.

 

Here's Dr. Cunningham's contact info.

Kathy Alvarez's e-mail is probably the best place to start: http://www.latitudes.org/forums/index.php?showtopic=9477&pid=79646&start=&st=#entry79646

 

and here's a thread (for later) with info. on getting the blood http://www.latitudes.org/forums/index.php?showtopic=9896&pid=83133&start=&st=#entry83133

 

If you are already getting blood at your local docs lab (for ASO/anti-dnase B ) you could ask the lab if they can just pull some extra blood for the study (have the forms to show them).

Edited September 20, 2010 by EAMom

[eljomom]

So does your son have pandas? he had low titers, etc. How was he diagnosed?? Forgive me if you already mentioned this...I can't keep everyone straight.

My husband is NOT too thrilled (or willing) to pay $400 for something that he hardly notices b/c he's not with her all day, and for some reason just doesn't bother him like it upset me. Now what??

 

 

try not to be overwhelmed. One step at a time. its lots of new information. there is alot of info you don't need to know about on this site - it varies by child. You don't have do, or know, everything at once. Strep tiers - done by your pediatrician (ask for something to numb your daughters arm before the blood draw, this will make the future ones easier). And the cunningham test. If you live near a pandas specialist doctor, maybe get an on the books for an appointment.

 

After u get the kit for the cunninghams test, post again if you have any questions, we will walk u thru it! There are intructions, and most labs ask that u have the blood drawn for it in the morning so it can be fed exed (ours wanted blood drawn before 11:00am).

 

I spent too much time being afraid of what the answers might be - it froze me. don't be me! act sooner than later, and you have a great opportunity to get her back on track with antibiotics, if she even has pandas. Personally, I was hoping for a pandas dx, I was afraid if ds didn't get one, I couldn't do anything to help him. ds had low strep titers, and the they were taken months after his first episode. first episode that I noticed, although in retrospect, he probably had one when he was 5 and 7 too. maybe if I had done something back when he was 7 I could have avoided everything he went thru when he was 11.

[norcalmom]

I know EXACTLY where you are at. At a certain point in my son's illness, when my husband still didn't get it, something in me clicked. I decided I would pursue whatever I needed to regardless of cost of inconvenience to get my kid better. It wasn't even a decision that was discussed - I jsut started to make appointments and get tests without consulting him. It was toooo much stress to fight with him and justify and convince. Lets face it, most of the guys (I apologize to worrieddad and buster...and a couple of other dads that are ahead of the curve) just aren't as closely clued into the emotional shifts, changes in behavior, etc that moms are, and what is really ODD, and what is not (from watching lots of other kids, which we are around more). I listened to my husband saying "its just a phase, he'll pass through it" for a few years before my son got bad enough (a violent tic - so couldn't ignore that!)

 

Unfortunately, there is alot of family stress until you are both on the same page.

 

As soon as my attitude changed, my husband became the happy passenger on the pandas bus. There werent' any more arguments - it was like he sensed he better get out of my way!

 

 

And - yes, my son had low titers, and so did EAmom's daughter (sorry for speaking for you eamom). Alot of kids do.

[EAMom]

Yup...my dd had low titers (despite positive cultures in both PANDAS dd and her younger sister.)

 

B/c of the Cunningham test results, we were able to convince our (reluctant) local immunologist to okay IVIG. Without it, we would have had to travel to Chicago (from CA) for IVIG (twice). So, even though there are costs (tax deductible) associated with the Cunningham test, in the long run (in our case at least) the test saved us LOTS of money and travel/stress/expenses.

 

Personally, I feel like the $400 is a very small drop in the bucket compared to the overall expense (both emotionally and financially) of PANDAS...esp. for those with tics (who are trying to figure out if it's PANDAS or non-pandas tourettes) or those with low titers need some "evidence" to present to doubting docs.

[eljomom]

so my question is if you and some others kids' had low titers, what finally distinguished between Tourette's and PANDAS?? From what I've read, Tourette's can start abruptly in some, and waxes and wanes.

 

 

I know EXACTLY where you are at. At a certain point in my son's illness, when my husband still didn't get it, something in me clicked. I decided I would pursue whatever I needed to regardless of cost of inconvenience to get my kid better. It wasn't even a decision that was discussed - I jsut started to make appointments and get tests without consulting him. It was toooo much stress to fight with him and justify and convince. Lets face it, most of the guys (I apologize to worrieddad and buster...and a couple of other dads that are ahead of the curve) just aren't as closely clued into the emotional shifts, changes in behavior, etc that moms are, and what is really ODD, and what is not (from watching lots of other kids, which we are around more). I listened to my husband saying "its just a phase, he'll pass through it" for a few years before my son got bad enough (a violent tic - so couldn't ignore that!)

 

Unfortunately, there is alot of family stress until you are both on the same page.

 

As soon as my attitude changed, my husband became the happy passenger on the pandas bus. There werent' any more arguments - it was like he sensed he better get out of my way!

 

 

And - yes, my son had low titers, and so did EAmom's daughter (sorry for speaking for you eamom). Alot of kids do.

[T_Mom]

PANDAS symptoms are varied but there appear to be a core of symptoms, including tics/tourette-like behaviors (see lists in the "Helpful Threads" posts at the top of the Pandas forum--or on websites www.pandasnetwork.org )

 

In many cases the diagnosis is made in a clinical fashion, once you have seen (time and again) the symptoms reduce or abate with antibiotics--then you may have probable cause.

Edited September 22, 2010 by T.Mom

[eljomom]

I feel like I'm beating a dead horse, but if there is no active strep going on in the body, AND pandas is caused by the antibodies, AND IVIG works (that deals w/the antibodies), then I'm still not grasping why an antibiotic would help.....sorry to keep needing things explained. I feel like one minute, I understand, then the next, I'm going in circles again.

Also, I've looked at the links to the Cunningham, but could someone in laymans terms, tell me what exactly the Cunningham's is testing for, AND why it's NOT looked at by most docs??

 

thanks for your patience w/me..

 

 

PANDAS symptoms are varied but there appear to be a core of symptoms, including tics/tourette-like behaviors (see lists in the "Helpful Threads" posts at the top of the Pandas forum--or on websites www.pandasnetwork.org )

 

In many cases the diagnosis is made in a clinical fashion, once you have seen (time and again) the symptoms reduce or abate with antibiotics--then you may have probable cause.

[michele]

We have had the same issues for 7 years. Neurologists saying they are tics and wax and wane. However, it started with strep and elevated stre antibodies. Everytime he is sick or gets fevers they increase. I know tics can wax during illness though. We did the Cunningham tests and were in low PANDAS range so that is also confusing cause it can also be also considered the tourettes/OCD range. My son also has anxiety and ADHD and compulsions. But the real factor is the correlation of the symptoms increasing after he is sick. He does toe movements and tics, does compulsions, has low tone, struggles in Math and Spelling and writing. All classic symptoms of Tourettes or PANDAS plus the anger. He has never gotten well on anibiotics but sometimes better with time he improves. He got really mean on steroids. Then illness strikes and we see the symptoms return worse then before. We test his strep antibodies and they are elevated. So we put him on a stronger antibitoic. We have only found relief with medications. I know some people are against using meds but that is the only way we have been able to treat the psychological symptoms of the rage, ADHD and anxiety OCD. He also takes daily antibiotics.

PANDAS symptoms are varied but there appear to be a core of symptoms, including tics/tourette-like behaviors (see lists in the "Helpful Threads" posts at the top of the Pandas forum--or on websites www.pandasnetwork.org )

 

In many cases the diagnosis is made in a clinical fashion, once you have seen (time and again) the symptoms reduce or abate with antibiotics--then you may have probable cause.

Edited September 22, 2010 by michele