Saw specialist-jackpot!

[Buster]

Hi MomMd,

 

Which titers are you checking? Are you checking the anti-GM1 titers or ASO or ...?

 

Buster

 

quote name='mom md' date='Jun 1 2009, 07:52 PM' post='33644']

PEX has less risk of blood infections (never been a case report) because it is just albumin being transfused, as opposed to IVIG which is pooled antibody. PEX is more invasive though, it requires a central line and a PICU stay for 3-4 days. We checked the titers before we decided on PEX just to see if the azith had brought the titers down because he was still having so many symptoms. The nice thing about the PEX is we can check his levels through the process and make sure they get cleared.

[Kayanne]

Kayanne,

I was wondering, if you don't mind, if your sister's children also have PANDAS. My children do and two of my sister's children do also. I have always wondered how many kids with PANDAS have 1st cousinsd with it also.

Colleen

 

Colleen,

 

PANDAS is completly new to my family. When my daughter's behavior started to change, I was telling my sister about it. She kept telling me that her daughter is "just like that"..."she still can't make a decision"..."she cried for the whole second half of kindergarten, and only told us years later it was because she was afraid after the boy next to her vomited". With the best of intentions, my sister was trying to assure me that these behaviors were somewhat normal; however her daughter never saw a drop in her performance in school or social behavior the way my daughter has.

 

Best of luck!

[greeneyes48072]

Just to add to the heart concerns, we have IVIG scheduled for 6-26/6-27 so we took our son to the cardiologist just to be safe. He found no problems. We are also checking kidney's just to be safe. We excluded the PEX as an option because it appears to be much greater of a risk, blood clots being one of those risks...

[P_Mom]

Mom MD,

 

Is Dr. Latimer going to be the one prescribing the antibiotics after PEX?

 

Thanks!

[mom md]

Yes. My guess is though we will need to see her once a year in followup.

[bmom]

Just wondering if anyone knew if Dr. Latimer uses strep antibody levels as a requirement for the PANDAS diagnoses and treatment?

[P_Mom]

Hey BMom,

 

I just asked her that question yesterday. We are seriously considering going to her for treatment instead of dr.K only because she is a four hour drive and he is about 8-10 for us. Actually, I am pretty sure we will do that, and I need to confirm the appointment on Monday. She offers IVIG..and then some.

 

I told her about my sons and their strep titers, being that they never tested high (missed acute episode). She said that strep titers were in no way a "deal breaker." She said Docs, specifically Dr. Cunningham, are focusing on different, more specific antibodies.

 

I am not cancelling my IVIG appointment (August 6 and 7) with dr.K until after I see Latimer, June 18, just to be safe.

 

How is your son?

 

Kelly

[bmom]

He is doing pretty well. I am going to email Dr. K about the Augmentin. When we all got strep, he also got strep on the 250 mg. Things settled down with a round of full dose Azith. I emailed doc K and he about upping him to 500 mg. due to this and weight. He said yes. I have delayed and he is still on 250 mg. I was going to up it in the summer. Now I am wondering if I should as I dont want to if it is not needed. Maybe I will up it until 1 year post IVIG which is in 6 months. I dont want him to catch strep, but I want him on lowest dose. Thoughts? All in all, he is doing well. He still has some night time anxiety. Very mild tics here and there, but not always, and light sensitivity (some, not nearly as bad). Thanks for asking. (I also cried when I read your story).

[P_Mom]

BMom,

 

I totally understand your antibiotic dose dilemma. I struggle with it, too. I want to give the least effective amount, of course, but, I just don't know. 250 mg once a day does seem low, however, it has worked for us so far, so, I think I'll stick with it. Now, if my kids get strep while on that dose, I think I would have to up it or change antibiotics. To what? I don't know.

 

I wish I could be more help....I got the same questions you do!

 

I am glad your son is doing well!

 

 

Kelly