New here and some questions

[scoobymummy]

Where did you grow up? Where do you live now and what are your symptoms to believe you might have passed along during pregnancy?

 

I moved a lot - lived in Ontario, Grand Rapids Mi and Mexico. My thinking that I may have passed it on inutero is only that he's had issues since birth - he was the baby with 'colic', who grew into the unhappy baby that never slept, who grew into the toddler that had 5-6 extreme (I'm talking anywhere from a half hour to an hour and a half per episode) tantrums a day to the boy who struggled with transitions and noisiness in school to the point where we pulled him out and started homeschooling. Also, I test positive for the strep as well and have had a lot of unexplained health issues over the years (depression, extreme fatigue, lethargy, migraines, anxiety). I'm just wondering because there is no clear starting point to the PANDAS. RE Lyme - those symptoms don't seem to match us - thank god. I don't think I could handle any more.

[sf_mom]

Did you do Igenex testing? If not they test more bands and co-infections. I think its important.

 

-Wendy

[sf_mom]

These are all symptoms of Lyme (depression, extreme fatigue, lethargy, migraines, anxiety) more so than PANDAS. I'd start with Lyme testing through Igenex first.

 

-Wendy

[DebC]

Regarding the foods/supplements question,

 

We are just in the process of changing our diet -- no white flour, no white sugar, no white rice, no hydrogenated oils, no milk.

 

We are adding a bunch of supplements -- immuplex, cataplex B, Tuna Omega 3 Oil, Xymogen IgG 2000 DF.

 

We will still splurge and go out to eat once a week and our PANDAS child will be allowed to eat cake at birthday parties or a cookie or two when we visit grandma. However, we are cutting way back on sugar as our nutritionist said that 2 tsp of sugar will lower the immune system for 4 hours. Our goal on this new eating plan is to raise our daughter's immunity and for the whole family to become more healthy in general. I'm taking the immuplex and cataplex B along with our daughter because of autoimmune issues on my side of the family.

 

The first several days of this new diet have been difficult for the kids but we just discovered a smoothie recipe that they actually liked (orange juice, strawberries, plain yogurt, honey, stevia).

[sf_mom]

Have you read Cure Unknown yet? I highly recommend it for any PANDAS parent.

 

-Wendy

 

 

 

 

Almost half of the "normal" population tests positive for the 41 Band in the Lyme test....extremely common....I do not believe this means that almost half of the population has Lyme...although many will try to tell you so!

[P_Mom]

Yes....and they all became ill gradually....for example her oldest son, Jason, slowly developed symptoms over many years until he got really bad.(and he developed the Lyme rash) It is not sudden onset like we saw in PANDAS...normal to not normal in a day. I still just do not think band 41 means Lyme........there is absolutely no definitive proof on it....none. Many will say it is Lyme if you have 41...I understand that......but, many also say PANDAS does not exist!! So....who do you believe??? For us....we had sudden onset of symptoms with documented Strep.....negative Lyme results (tested 3 times........yes, positive band 41, like over 40% of the population), but, no Lyme.

Just my opinion.

Edited July 12, 2010 by P.Mom

[justinekno]

As far as supplements and food... We pretty much follow the Feingold Diet in a very loose way. We avoid sugars, artificials, hydrogenated oils and preservatives. We still eat out once in a while but I have my son order off of the adult menu - grilled chicken/vegis versus some of the ick stuff on kids' menus. My son takes daily probiotics, s. boulardii, B-6, magnesium and calcium (he is non-dairy). In the wintertime, we add Vitamin C & D to the mix.

 

What do you do for prevention - do you do any vitamin supplementation or naturopathics to help boost the immune system?

 

Thanks for the help - I'm trying to read through posts and suggested web sites, but some direct answers would help a lot.

[sf_mom]

Hey I understand your perspective and why I'm recommending Igenex testing.

 

My friend's son doesn't have Lyme but has the co-infections typically to Lyme and the antibiotics of Biaxin/Rifampin are what are really, really helping. Which came first: the co-infections or the strep? THE STREP IS RESOLVED (he had chronic strep as a child and RF) and he still has OCD and underlying infections. I just now feel when you are investigating the cause the LYME/co-Infections need to be rule out in advance so you have the proper directive in antibiotic regimen and if IVIG is warranted.

 

-Wendy

[P_Mom]

Right... I am not saying don't check for Lyme if you think it may be a possibility...... Another thing I wonder.....since the all the anitbodies involved in PANDAS have not been identified (or, what the immune system is doing, exactly) ...could it be possible that many PANDAS kids are testing positive for Lyme (although still not definitive..just like PANDAS testing.....FUN) and, even more test positive for band 41....couldn't it be possible that something involved in PANDAS is creating this "positive" result...when it is actually not Lyme???? And then the Lyme treatments are effective because Lyme is treated with antibiotics....like PANDAS??? Who knows!! (oh..and vice versa!)

Edited July 12, 2010 by P.Mom

[JAG10]

Hope you don't mind if I jump in here... I posted this somewhere else, but I don't think anyone responded...

 

Has anyone on here had their child test negative for band 41?

[sf_mom]

WHO knows, is right... AND, I don't understand if there is some subjectivity to the co-infections testing either. BUT, what I do know is sometimes its the multiple high dose antibiotics following Lyme protocol helps tremendously. My son included..... at the end of May he still had infrequent throat clearing and a TIC of rubbing his nose/blowing on back of hand. When we switched him to Azithromycin/Omnicef combo he had some flairs of symptoms and then shed the mild throat clearing completely. Seven days ago, we rotated him to Omnicef/rifampin combo, we had a flair of the one remaining infrequent TIC approximately 72 hours later and resurgence of mood liability.... I will keep you posted if it finally stops completely. I won't know for sure if there is resolution to the TIC until we are further into the change of antibiotic. I did not see it yesterday. We have not had any OCD since last IVIG in January and our son presented with predominately TICS/mild OCD.

 

Currently, his ASO is 95 and Anti-DNase-B is 60 prior to IVIG his ASO was 244 and anti-DNase-B was negative. Mycoplasma is negative and we have no immune complexes.

 

-Wendy

[EAMom]

For those of you that do a phrophylactic dose, is it everyday or 3 times a week? How long do you continue? Is there a worry about the strep becoming resistant to the antibiotic?

 

My dd is on 250mg/day Azith. She's 60 pounds/10 years old now and has been on this dose for over 2 years (was 43 pounds when she started at this dose). In the past when we've tried to decrease the dose, symptoms have increased. We're not sure if this is from the immune modulation/anti-inflammatory effects of Azith. or anti-biotic effect.

[scoobymummy]

OK - now I'm really spinning How do the treatments for PANDAS and LYME differ????

[Fixit]

yes it was the igenex test that came up with those bands...

and i do relaize that band 41 may be a marker for any bacteria/virus with a tail....

.maybe as per what pmom is saying....maybe for my ds it is lymes...or maybe it's not and is some other "thing with a tail" that can be treated with a lymes protocol..but expresses outwardly in our pand/pit kids....

so..i just got an emial back from our doc who doesn't want to increase our abx to axith 500mg per day(currently we are only on 1x a week 500mg azith)

as we are having some progress on the taper and he wants to wait that out...

but as per sf...following the lyme protocal..is getting rid something maybe we don't have a test for????

[sf_mom]

Lyme is mostly antibiotic 'multiple' until symptomless... sometimes IVIG.

 

PANDAs is typically one antibiotic over period of time, or antibiotic with steroids, or PEX/IVIG in conjunction with antibiotics.

 

 

 

OK - now I'm really spinning How do the treatments for PANDAS and LYME differ????