Update on DD14

[NancyD]

No revision on Tindamax yet. We drive to NY on Friday to see Dr. Bock. Lots to discuss then. At the very least, I would REALLY like to take a break from it when we go on vacation for 12 days to the DR!

 

Wendy, do you think these numbers will help us to get IVIg covered by insurance? Dr. B was waiting to see these numbers.

 

Nancy,

 

We've been tracking all our children's strep pneumo titers over time and all are showing deficiencies.... Typically within normal for older DS shortly after IVIG treatments and depleted in 1/2 post 4 weeks and 1/2 again at 8 weeks. Our younger DS however had deficiencies in 13 of 14 serotypes and are now starting to turn around and showing responsiveness in 5 of 14 serotypes. We are making slow and steady progress in one child. I will start sleeping well when they are all within normal ranges. I hope to retest this in a YEAR or when we eventually suspend treatment.

 

Obviously with the Influenza index being high as well as mycoplasma your DD's body is having a difficult time fighting stuff.

 

Any revision on Tindamax for her yet?

 

-Wendy

 

 

 

 

 

Need your help interpreting some recent tests

 

These were high--

Influenza A IgG 3.92 (<0.80 Index)

Influenza B IgG 1.00 (<0.80 Index)

(Note: IgM and IgA for each was normal

 

Just more indication of an auto-immune problem?

 

These were low--

STREP PN Type 3 AB 0.2 (>1.0 og/mL)

STREP PN Type 4 AB 0.2 (>1.0 og/mL)

STREP PN Type 6B AB 0.6 (>1.0 og/mL)

STREP PN Type 7F AB 0.3 (>1.0 og/mL)

STREP PN Type 8 AB 0.3 (>1.0 og/mL)

STREP PN Type 9N AB <0.2 (>1.0 og/mL)

STREP PN Type 9V AB <0.2 (>1.0 og/mL)

STREP PN Type 12F AB <0.2(>1.0 og/mL)

STREP PN Type 14 AB 0.4 (>1.0 og/mL)

STREP PN Type 18C AB <0.2(>1.0 og/mL)

STREP PN Type 19F AB <0.2(>1.0 og/mL)

STREP PN Type 23F AB 0.5 (>1.0 og/mL)

(Note: Type 1 and 5 were normal)

 

As a reminder DD's Myco P IgG levels were 5 times as high as they should be.

 

Thanks!

Nancy

[NancyD]

Thanks Trg girl!

 

pubmed link

 

http://www.ncbi.nlm.nih.gov/pubmed/18695519

 

KMom,

 

I have tried Avon Skin So Soft and liked it, but have not tried Origins. I think I will see if I can find any online reviews/ratings on all that's out on the market. Never heard of rubbing fabric softner sheets on body and clothes. Wonder if the organic ones work as well. Good point about standing water.

 

With regards to your question about IVIg, I do think the LD was the culprit, not IVIg. However, I have heard some here say that IVIg can be problemsome when you have untreated LD. Perhaps someone else can comment on that.

 

All the joint pain, tingling, and numbness sure sounds like LD. That's what I have been experiencing. I know so well those 2 hour rages. It really wears you thin. But more than that, it really breaks your heart to see what they go through!

 

Nancy

 

Nancy D,

 

My PANDAS DD and DS (and possible Lyme...appt this week w/ LLMD:))were born and raised in the Carribean and yes, Dengue Fever was always a fear of mine. Just a tip since your daughter can't use DEET. Origins has "Gardener's Spray"...a natural bug spray I hear that is good. There's also Avon Skin So Soft. One last tip, rubbing fabric softner sheets on body and clothes are helpful to keep those pesky mosquitos away. Make sure there are no puddles of water around/nearby house. The mosquitos get Dengue from drinking stagnant water. I remember when neighbors moved and pool was left not taken care of and I had to call Homeowner's Office b/c non-chlorinated pools are disasterous for Dengue Fever issues.

 

Also, when you said above that you weren't sure if mood swings and rage were from PANDAS exacerbation or effects of IVIg on LD, did you mean that IVIg is bad if LD is a culprit? Since 1st IVIg 3 wks ago, kids were doing well, now horribly and the symptoms are so different than b/f. DD9 complains of foot pain (ranges from tingling to sharp pain), discomfort/pain/electical pulse from forearms to hands, joint pain in thumb and she said yesterday it feels as though her eyes are going to pop out of her head...weird huh? Oh,and we've had rage which we have seen in PANDAS exacerbations...hers are 1-2hr. crying meltdowns but she did describe them as feeling angry.

 

DS6--had joint pain on and off ever since we can remember. Dr's always claimed growing pains. Last week got off bus limping. He says the ankle bone "circle part that sticks out" feels like it fall off. His frustration then rage is getting worse daily. It's so sad to watch. Playing Legos or computer game, gets frustrated, says he hates himself for being so stupid and then runs around yelling and if I try to help him, acts as though I am going to hurt him which I never have or would do. It's mind boggling. Managed to get him in epsom salt bath tonight but was a struggle. After he calmed down, he hugged and kissed me to apologize. Gosh it's wearing.

[sf_mom]

It would help get IVIG covered but with that said.......... I'd get some of the Lyme herxing over and done before you proceed with another treatment.

[NancyD]

Oh yes, definitely...just trying to get this approved before my appeal time runs out. If I get them to say yes now they won't turn me down in a few months.

 

It would help get IVIG covered but with that said.......... I'd get some of the Lyme herxing over and done before you proceed with another treatment.

[NancyD]

Can Tindamax and Springreen No. 77 (Bentonite clay) be taken at the same time or must they be spaced apart?

 

Thanks!

Nancy

[NancyD]

Never mind. Just saw an earlier post where Elizabeth suggests taking it with probiotics so that is what I will do.

 

Can Tindamax and Springreen No. 77 (Bentonite clay) be taken at the same time or must they be spaced apart?

 

Thanks!

Nancy