Older Brother's ASO and Mycoplasma Elevated

[Joan Pandas Mom]

We are in the middle of a HORRIBLE exacerbation here. We got results this morning. DS older brother's ASO is 244 range being 0-200. Mycoplasma IgG 415 range 0-99. Why do some PANDAS Docs treat IgG mycoplasma and others treat ONLY if IgM is elevated? We are having IVIG late next week. Is this too close? How long does it take for abx to work on older brother?

[peglem]

Why do some PANDAS Docs treat IgG mycoplasma and others treat ONLY if IgM is elevated?

If IgM is elevated it means the infection is current. IgM is kind of an IgG precursor. Elevated IgG could indicate current infection (if its not the first one), but don't know how high it would have to be to show infection vs protection from exposure. I would think elevated IgG + clinical symptoms would warrant treatment. Just guessing what their thinking may be. Also, some docs may not consider MycoP AB to be triggers.

[Joan Pandas Mom]

Thanks Peg. Have you or anyone else here added abx with exposure in the house? I am going to ask Dr. B's office tomorrow, but just curious in the meantime. He is currently on 1000 augmentin xr twice a day. I started my older son on biaxin until I can get a hold of his dr. He, older brother, went to get checked out a week ago Sat. because I was worried about his cough. Dr. said it was allergies. I didn't ask for strep culture because I knew he had had the ASO the day before and we were just waiting for the results. It makes me realize I need to do a much better job of educating pedi about PANDAS. When there is a coughing, congested sibling in the house run the cultures, titers, etc.

[peglem]

We have not been able to detect strep or myco in other family members- except an older sis who would sometimes get symptomatic strep at the same time as Allie. It seems that Allie was the carrier.

Incidentally, IMHO, a positive swab is better than titers for checking infection, as long as the "swabber" is good at it. Titers usually will not tell you if the infection is current and lots of false negative titers, and they can be raised just from exposure, w/o actual infection.

[Megs_Mom]

Your family reminds me a lot of Worried Dad's son/family situation. You might want to talk with him a little bit about IVIG & abx dosage. Your posts remind me very much of his, about 18 months ago. I'm sorry to hear that things are so bad right now. I'll be thinking of you both.

[Joan Pandas Mom]

Thanks for this. You are right. I pm'd him over the summer. He was very helpful and encouraging. It is so hard right now. I feel like I should take him to the Hospital for sedation. This is so awful. His son saw best improvements after family was treated for high titers and 2 ivig's fairly close together. What pulled it together was Sammy dose Augmentin (which my son started again about 4 days ago.) We have IVIG #2 next week. I personally feel they were scheduled too far apart. Oh well, we are all still learning.

[EAMom]

How big is your son?

 

Saving Sammy was on 1000mg of XR 2x daily (he was about 100pounds). I think WD's son was about that size too.

 

But, if your son is larger (adult size?) and older, he could take even more...2000mg 2x daily.

[tpotter]

Last week when my DH and I went to see Dr. B. (the boys had already been), I spoke with him about treating my DH and both my DS's for MycoP. My IgM and IgG were significantly elevated, and I suspect I have been battling MycoP for years. My DH's IgM was borderline elevated, and his IgG was quite high, and both my DS's (both have PANDAS) IgG were quite high. I told Dr. B. that I felt it was probably going back and forth in our family, and pointed out, too that the comment on the lab test was that elevated IgG does not tell you whether or not the infection is current or previous, just that there are antibodies to it.

 

I asked him to treat the entire family, and he agreed to do so. I really think it depends on the doctor, and even more than that your family's circumstances, and how you explain it. That's really just my thought.

[Joan Pandas Mom]

My son's 160 lbs. Someone told me they thought one doc treated a 16 year old with 2000 mg 2x a day but they weren't sure though. Do you know of anyone that has had this. The highest I have heard of is the 1,000xr 2x a day. I'll ask Dr. B too on Thursday.

[EAMom]

2000mg twice daily (4000mg/day) is the normal adult dose for Aug. XR.

 

Here's a link. http://us.gsk.com/products/assets/us_augmentin_xr.pdf

 

Table 2, page 4:

THey counted pediatric as 7-15 years and weighing at least 40kg. Even those kids could take the adult dose (2000 mg twice daily).

 

 

As far as I can see, with his age(above 15) and weight (definitely in the adult range), and I see no reason why he shouldn't take a full adult dose (2000mg 2x daily), esp. if younger/smaller kids are allowed this dose (if greater than 40 kg).

 

So IMO, I think we have a reasonable explanation for your son's lack of improvement on IVIG

1) too low a dose of Aug. XR (considering his size and age)

2) likely presence of strep in household (brother with high titers)

 

So, my hope is (as in Worried Dad's situation), with a high enough dose of antibiotics, and also treating family members, you will start to see some improvements with IVIG.

 

(BTW, my 64 pound child just finished a month of Aug. XR 1000mg 2x daily...so it makes sense that your son (100 pounds more) needs 2000mg 2x daily!)

Edited October 5, 2010 by EAMom

[Joan Pandas Mom]

THANK YOU SO MUCH FOR THIS. I hope between this and the IVIG my son can have the life God intended for him. It would be so great to see the beautiful, sincere, RELAXED smile again. I love your member picture. I smile every time I see it! Thanks.

[EAMom]

We are in the middle of a HORRIBLE exacerbation here. We got results this morning. DS older brother's ASO is 244 range being 0-200. Mycoplasma IgG 415 range 0-99. Why do some PANDAS Docs treat IgG mycoplasma and others treat ONLY if IgM is elevated? We are having IVIG late next week. Is this too close? How long does it take for abx to work on older brother?

 

Keeping my fingers crossed that treating brother, higher abs, and IVIG does the trick!