pandas or Ts?

[myrose]

Thanks for that ton of info Linda. We are still good today. She has one more day on the Zith. If after that things suddenely come back I will call the creations place.

I was informed of that place a bit ago and was about to call but it was then her neuro said "NO" to Pandas because her aso titers were not elevated when tested.

Topamax helped after that when it got bad so we just stayed on it to get some relief while we tried to pick and figure this whole thing out.

 

Thanks again for all the info. Hopefully maybe I can get to the bottom of things this time or at least come close.

Also she only tested positive for strep (rapid) one time. It was on a routine visit because other kids in her class had it.

The doctor pretty much said she did not need to be tested because she had no fever and nothing was white in her mouth and of course no sore throat. I INSISTED and explained that the only reason for our visit that day was for a strep test.

She finally did it and when she came back in the room she could not even face me and said "well its positive"!

My daughter had zero symptoms and I was even surprised.

Her ocd was sudden onset...this I know. Luckily its not bad, at least I do not think it is.

Lastly what troubles me is that I never saw any changes in her handwriting. I see and read that this is a common thing with Pandas.

Thanks again and have a nice night

[lss]

Thanks for that ton of info Linda. We are still good today. She has one more day on the Zith. If after that things suddenely come back I will call the creations place.

I was informed of that place a bit ago and was about to call but it was then her neuro said "NO" to Pandas because her aso titers were not elevated when tested.

Topamax helped after that when it got bad so we just stayed on it to get some relief while we tried to pick and figure this whole thing out.

 

Thanks again for all the info. Hopefully maybe I can get to the bottom of things this time or at least come close.

Also she only tested positive for strep (rapid) one time. It was on a routine visit because other kids in her class had it.

The doctor pretty much said she did not need to be tested because she had no fever and nothing was white in her mouth and of course no sore throat. I INSISTED and explained that the only reason for our visit that day was for a strep test.

She finally did it and when she came back in the room she could not even face me and said "well its positive"!

My daughter had zero symptoms and I was even surprised.

Her ocd was sudden onset...this I know. Luckily its not bad, at least I do not think it is.

Lastly what troubles me is that I never saw any changes in her handwriting. I see and read that this is a common thing with Pandas.

Thanks again and have a nice night

 

 

Wendy,

 

As for the titers, not necessarily true. Some Panda kids do not have elevated titers, and as you said, your child did not have the typical strep symptoms, some don't. Do email dr. cunningham, and do the test (I don't remember exactly what the cost was, I think it was $200) It will show the levels of CamKinase elevated if she has Pandas. But as I said, the drs over at Creations Own can also test her, not sure if its the same test, but since they are closer to you and they are doctors who see patients, Dr. C is a research dr. The strep doesn't always have to be in the throat. As for the handwriting, again not all kids have this, every child appears to have alot of similar symptoms and yet alot of different ones as well.

 

Good Luck

 

Linda

[T_Mom]

Hi Wendy,

I agree with Linda that you do not always find positive titers, it depends on the timing of the rise and fall and in some children they do not appear to be "necessary" as an indicator.

Our daughter has never had high titers, nor (in the last year and a half) a positive strep test. Yet her CamKinase levels in the Cunningham blood work were right in the middle of the PANDAS group, even when she was doing very well--

 

The diagnosis may be more subtle than obvious (though the symptoms are typically VERY obvious)...the big question is does the child respond to antibiotics, or a steroid burst...

 

Regular OCD does not go away with antibiotics. Typical tics do not go away with antibiotics. Ask any psychiatrist. IF it is a PANDAS syndrome it will need treatment. I would try to find a doctor who is willing to follow you now (in the "better" times) so you don't have to find one if another crisis comes along (may it never reappear--)

Best,

T.

[chap]

Chap,

I wanted to comment on the penicillin dose. How much does your child weigh? The penicillin dose your child is taking is a very low dose. Penicillin is not always the best choice for strep. Can you get them to switch it something like Keflex or Zithromax? It is a red flag that your other children recently had strep skin infections, which are aslo caused by strep A.,

 

Colleen

 

 

Hiya

 

thankyou all so much for your replies. Colleen, yes I am also concerned that it was a very low dose that we were given, but think that is because our doc is used to prescribing penicillin for stuff other then tics. She (and I) really have no knowledge of what the best med or doseages would be. Ive forgotten her weight off the top of my head but its in an earlier post. The tics have calmed right down now, although they are still there a bit. It was the longest period of ticcing we've had, probably lasting about 35 days (I stopped counting!)

[chap]

Chap,

I wanted to comment on the penicillin dose. How much does your child weigh? The penicillin dose your child is taking is a very low dose. Penicillin is not always the best choice for strep. Can you get them to switch it something like Keflex or Zithromax? It is a red flag that your other children recently had strep skin infections, which are aslo caused by strep A.,

 

Colleen

 

 

Hiya

 

thankyou all so much for your replies. Colleen, yes I am also concerned that it was a very low dose that we were given, but think that is because our doc is used to prescribing penicillin for stuff other then tics. She (and I) really have no knowledge of what the best med or doseages would be. Ive forgotten her weight off the top of my head but its in an earlier post. The tics have calmed right down now, although they are still there a bit. It was the longest period of ticcing we've had, probably lasting about 35 days (I stopped counting!)

 

her weight is aprox 42lbs (or 21kgs as we say over here!)

[colleenrn]

Chap,

A treatment dose for your child would be more like 250mg three times per day. Your doctor may have put her on a prophylactic dose, BUT you have to start out witht he treatment dose to get rid of the strep, then switch to the lower dose.

 

MyRose,

 

None of my four children have EVER had an elevated strep titer. They also do NOT get any physical symptoms whatsoever with strep, so in the beginning before I realized this, my oldest would have untreated strep for a while b/c no one thought to check for it in the absence of symptoms.

 

They can have strep with NO fever, NO red or sore throat. The same is true with my nieces and nephews. This is very common in children with PANDAS and unfortunately this causes a lot of people to think they can rule out PANDAS.

 

I am in no way trying to diagnose yourt child, just help you figure this out, but based on all your posts I have read, she sure sounds like PANDAS to me. IF she worsens upon finishing the Zith I would get her tested (could be a false negative though due to just being on it) and insist on a long course of it.

Good luck and h ang in there!

Colleen