We got our diagnosis last week----

[texascatholic]

Hi All,

 

Our DD8 was formally diagnosed last week with PANDAS. We are going to try

antibiotics first. She does not have high strep titres, but scored in the PANDAS

range on Dr. Cunningham's test. We are in the midst of another exacerbation rising up

due to a flu-like illness that has been going through the family.

 

Any recommendations on whether we should try Azithromax or Augmentin? He is also going to try

advil as an anti-inflammatory. Our doc said Augmentin is the most highly recommended. He said we can do IVIG if the antibiotics

don't help. I was also curious whether anyone has an opinion about plasmapheresis versus IVIG? Also, she is about 67lbs. Any idea about

dosages would help. I know the dr. will have his own recommendations, but I'm curious what you all might have to say.

 

Well, we are excited to finally get going on treatments. Yesterday was tough. Couldn' bring her to Mass due to rages.

 

God bless,

Holly

[NMom]

Holly -

 

My son was recently diagnosed as well (July) but the exacerbation started in May - just took us awhile to get the formal diagnosis. He was started on antibiotics about a month after the symptoms started and has responded very well. He was started on Augmentin and then we tried to switch to a maintenance dose of zithromax but he just couldn't tolerate it. He had horrible stomachaches, was pale and had no energy. We switched back to Augmentin about 10 days ago and those symptoms went away very quickly. Everyone is different and I know a lot of people have luck with zithromax - it just didn't work for us. We have not gotten to the point yet of considering IVIG vs PEX. If we do, I'm leaning towards PEX but we see Dr. Latimer (in DC) and she only does PEX. I asked her why she prefers PEX and I liked/agreed with her answers so that's probably what we would do if necessary. Having said that...lots of people do IVIG and probably have input on why IVIG is a good option. In the end..it comes down to what you are most comfortable doing. Both are serious procedures and should be considered for all their risks and benefits.

 

If you don't mind sharing...where are you in TX? I'm in Spring, TX (just outside Houston) and there seem to be a lot of us here. Take care!

Rachel

[AmySLP]

Holly -

 

My son was recently diagnosed as well (July) but the exacerbation started in May - just took us awhile to get the formal diagnosis. He was started on antibiotics about a month after the symptoms started and has responded very well. He was started on Augmentin and then we tried to switch to a maintenance dose of zithromax but he just couldn't tolerate it. He had horrible stomachaches, was pale and had no energy. We switched back to Augmentin about 10 days ago and those symptoms went away very quickly. Everyone is different and I know a lot of people have luck with zithromax - it just didn't work for us. We have not gotten to the point yet of considering IVIG vs PEX. If we do, I'm leaning towards PEX but we see Dr. Latimer (in DC) and she only does PEX. I asked her why she prefers PEX and I liked/agreed with her answers so that's probably what we would do if necessary. Having said that...lots of people do IVIG and probably have input on why IVIG is a good option. In the end..it comes down to what you are most comfortable doing. Both are serious procedures and should be considered for all their risks and benefits.

 

If you don't mind sharing...where are you in TX? I'm in Spring, TX (just outside Houston) and there seem to be a lot of us here. Take care!

Rachel

 

Having had our DD6 on both zith & Augmentin ES-I have learned that it's really individual. My daughter is doing better on Augmentin than on zith. but many others have the opposite experience. I'd say to try one and see (it is my understanding that zith. has some anti-inflammatory properties already, so ibuprofen may not be necessary if that's the ABX chosen). My daughter is 50 lbs, and took 600 mg Aug ES BID, with a recent drop to 600mg once daily to see if she can stay stable on that dose. I think her Azith. dose was 250mg/day.

 

Best Wishes,

Amy

Edited August 30, 2010 by AmySLP

[texascatholic]

Hi Again...

 

We are in San Antonio. Thanks for the info about the plasmapheresis. Boy, today is a "ragey" morning already! We homeschool though, so it's nice to not have to send her somewhere else when she is in this state.

 

Blessings,

Holly

[momaine]

The way I understand it, PEX cleans the autoantibodies out of the blood which brings about a quicker response, however, if the child still has an autoimmune disorder, they will make more autoantibodies and the fix will only be temporary. IVIG stops the autoimmune process (or at least that is the theory) so that no more autoantibodies are made. (once the good antibodies from donors are in the blood long enough the autoimmune process will stop)

 

Glad you got a diagnosis and are heading in the right direction. Curious to know who your doctor is, if you want to share.

[texascatholic]

I went to Dr. Rao in Plano for the diagnosis. He's a very kind man and treats autism as well (not an issue we are dealing with). We are going to be working with two local immunologists Drs. Brooks and Infante here in San Antonio, Lord-willing, very soon. They just recently started treating PANDAS (I found that out from Sadie here on the forum - thanks!) and they take our insurance.

 

Blessings to all of you moms...hang in there!

 

Holly

[texascatholic]

Does anyone ever do plasmapheresis first and then IVIG????

 

Wonder if that would make any sense.

 

Holly

[saidie10]

so glad you have answers now. we saw Dr. Rao for diagnosis too...thinking about doing a phone consult with him regarding my younger son who scored 179 on Cunningham but doesn't have high titers either. i personally think he should be on abx. his rages and tantrums are god awful and it doesn't help when his older brother who we did get a formal diagnosis is raging

 

wish I had answers about dosage but i would agree that Augmentin is what most are saying is the best. hope you can get into Dr. Infante and his group soon. wonderful team!! we should get together soon!!!

[matis_mom]

Does anyone ever do plasmapheresis first and then IVIG????

 

Wonder if that would make any sense.

 

Holly

Hi Holly,

Welcome to the forum, and so sorry to hear about your daughter. Our ds12 has PANDAS and was diagnosed over a year ago. He is on Augmentin and made great progress but now we are looking at plasmapheresis as he does not seem to be able to keep his gains. What antibiotic works depends on the child, and what infections he/she may have. Also, regarding plasmapheresis vs. IVIG, it also depends on the child and what other immune issues they may have.

Hopefully now with a diagnosis your daugther will make great progress.

Just my from my own experience, make sure the whole family is clear of strep! That has been our biggest battle.

God bless,

 

Isabel

(who just came back from noon Mass in VA

[texascatholic]

Hi there Isabel...

 

Nice to meet another Catholic here (I'm sure there are many! :-) I'd be interested in hearing more about

how your faith has sustained you through this difficult time. We are new Catholic converts ourselves. Thanks

for the info about antibiotics and PEX v IVIG. Still trying to figure all of this out. I think I will have to get

us all cultured for Strep even though this is a big hassle. Funny thing is my PANDAS DD has never had positive strep titres, so

we're still kind of confused.

 

Yes, Sadie10, would love to get together sometime since you are so close! Do you ever get down to San Antonio?

I know you had thought about putting together a support group sometime. Let me know if this becomes a reality.

 

God bless all of you,

Holly

[matis_mom]

I'd be interested in hearing more about how your faith has sustained you through this difficult time.

Though I have my rough times, it's just good to know God is in charge. Even the tiniest microbe is under His dominion, and He has a plan for ds's life, there is a loving God behind all this. Just the other day I was thinking how easy it is to get distracted by wordly pursuits... no time for that when you are dealing with health issues! I just get very stressed out when I have to make a decision (which doctor to see, what to do, when to say when), which just brings me to prayer, which is awesome. I just wish God would spell out for me exactly what it is I am supposed to do

All the best to you in your PANDAS journey, and in your faith journey!

[GraceUnderPressure]

Hi Holly!

 

Another Catholic homeschooling family here! I am a revert rather than a convert. We are west of Houston in Katy. We will be going to Dr. R on Sept 24th. You being Catholic will appreciate this - I have a devotion to Our Lord as the Divine Mercy & wear the scapular of Our Lady of Mercy whose intercession I have been begging. Well, it turns out that the 24th is the feast day of Our Lady of Ransom on the liturgical calendar - an obscure title from back during the days when the Moors invaded Spain & the Blessed Mother appeared to St. Peter Nolasco carrying two bags of coins for use in ransoming Christians imprisoned by Moors. But it turns out that Our Lady of Ransom is also known under the title of Our Lady of Mercy! That sign gives me hope that we are on the right track with all this!

 

mati's mom, you have said it beautifully! If I didn't have my faith to sustain me, I would have gone under a long time ago. Like you, I wish God would just send me an instruction manual! I do keep reminding the Lord that I am still struggling with "deafness" and "blindness" and I need Him to help me figure out what to do!

[texascatholic]

Thanks for the inspiration, Ladies!

 

I too love the Divine Mercy chaplet and was recently enrolled in the Brown scapular. I attribute

and success we've had with figuring out this whole thing to Our Lady's intercession. The rosary has been

such a comfort to me lately (although PANDAS DD8 is not cooperating in the prayers lately, hoping for that

to come after some treatment). What homeschool curriculum do you use? This year we are using Mother

of Divine Grace and some Catholic Heritage stuff. God bless!

 

Holly

[GraceUnderPressure]

I'll pm you, Holly!

 

~Grace