PANDAS, Maybe off on for 5 years - 8 year old

[Megs_Mom]

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Edited February 23, 2012 by Meg's Mom

[Kayanne]

So sorry that you are going through this too!

 

What I think is key in your post is that your daughter had improvement with prednisone and antibiotics...PANDAS normally abates when you use those medications.

 

You are not crazy, and I completly understand "second guessing" yourself. My DD also seemed mild, we didn't see an overnight appearance of her behaviors, we have a family history of overall anxiety/OCD, and some of her symptoms were not new behaviors, so if she didn't have a clear history of repeated strep infection, we would be treating her for anxiety and OCD.

 

I really think in the long run, this is going be considered a spectrum disorder because of the wide varying degrees of severity and symptoms that PANDAS can cause.

 

I see that you have a phone consult with Dr. Latimer. She is treating my daughter right now. Luckily we only live 3 hours from her...My daughter has been brought back to us by a six week use of Prednisone....all thanks to Diana Polhman's push for us to see Dr. Latimer. If you have not touched base with Diana yet, go to her website, and give her your contact info:

 

www.pandasnetwork.org

 

Best of luck

 

~Karen

[colleenrn]

So sorry to hear what you are going through.

 

It most definitely sounds like you are dealing with PANDAS. Who prescribed the Zithromax and for what reason? If she has strep somewhere and weighs 50 #, 100 mg for 5 days is not enough. A treatment dose of Zithromax should be 12mg/kg/day. For a 50# child it should be 250mg/day. The usual course is 5 days, but with PANDAS children they usually require at least 10 days if not longer. Then, when you are ready to bump it down to a prophylactic dose, IMO M/W/F is not enough. You are better off decreasing the dose to 125mg/day, but given everyday. Some kids can eventually go to every other day, but you want to start with the higher dose, then decrease it. Every child is different, but this is what I feel works best.

You may really want to consider not giving a flu shot this year. Many, many PANDAS children react negatively to vaccines, especially flu shots.

There are a lot of parents on this forum who will have info for you. Hang in there!!

 

Colleen

[EAMom]

Great writeup! It definitely 110% sounds like your dd has pandas.

 

In May 2008 did the docs do a throat culture or just titers? When we first learned of PANDAS (3/08) our dd also had low titers but had a positive throat culture and perianal skin culture (2 mo. after likely strep infection; her assymptomatic sister was also throat culture positive) . That is a major pet peeve of mine...docs that do titers but not throat cultures. Lots of PANDAS kids have low ASO/anti-dnase B. Also, lots of PANDAS kids don't get classic strep symptoms, only behavior changes. But, they don't bother to culture for strep b/c the throat doesn't look red. Urrghhh.

 

Note: I am glad you are doing the Cunningham blood tests. Just so you know, the values might be lower if you dd is not in an exacerbation/and or she has had a course of steroids.

 

Re Azith: Our dd (55 pounds, was 45 when she started at this dose) has been on 250mg/day of Azith. since June 08 (over 1 year). Our immunlogist (Stanford Univ.) felt this would be a safe dose for her to be on for years. We recently did IVIG and would like to decrease the Azith. eventually, but don't want to change anything for now. When we've tried to lower the Azith (to 125mg) in the past, our dd has reacted. The immunlogist agrees with our theory that much of the benefit of the Azith is immune modulation/anti-inflammatory, not just strep prohpylaxis. (If you go to the www.PANDASnetwork.org site our dd is case #2...more hx and info.)

 

Personally, I think the doses they gave your dd are low. Esp. the 300mg/week for long term strep prevention is low. In the Swedo study they used 500mg/week of Azith. I certainly wouldn't go any lower than that.

[Suzan]

Hi! I'm glad to see you here and to read your summary about Meg too! Is she still going to Montessori school this year? My girls go to a public Montessori program here.

 

I agree about the antiboitic dose. I think, at least in the beginning it would benefit to go up to 250 mg.

 

 

Regarding long term strep prevention that you mention EAMom, would this be better split up or at one time each week?

 

Thanks!

[EAMom]

I don't think it matters since Azith. has such a long 1/2 life...I believe the Swedo kids took it on one day of the week, 250mg in the am, 250mg in the pm.

[Megs_Mom]

Hi Colleen - our Neurologist prescribed the Zithro - for PANDAS - I am not sure that he'll increase for us, but I will ask. Do you have a link to a study that will show this amount? That would help us, sorry for asking I'll search the site as well. I was afraid that this might not be enough, but am so grateful to get anything. Thanks so much for the advice.

 

Had wierd day today - her final Celiac test (endoscope biopsy) came back negative. But the biopsy does show that she has peptic ulcers, and needs meds for that. So she really does have a stomach ache all the time, not just anxiety. I am very happy that she does not have Celiac, althougth I have worked hard at accepting that possibility. Then we went to therapy, and her therapist really thinks it's "just OCD", so I always leave a little confused. She is great at the ERP, and we need that since Meg's OCD comes on so far and is so severe untreated. On the positive side, she is now testing as subclinical OCD, so I am greatful for that, whatever the reason. Still work to do, but a much better place to do it from. 3 weeks ago, they were recommending ssri's, and she was still discussing this today. I am not ready to go there and don't think she needs it at this point. Anyway, I can use the encouragement today, as I feel like we are taking the path less traveled here. Odd to feel so strongly that something is true, but not really be able to prove it. Susan (Meg's Mom).

 

So sorry to hear what you are going through.

 

It most definitely sounds like you are dealing with PANDAS. Who prescribed the Zithromax and for what reason? If she has strep somewhere and weighs 50 #, 100 mg for 5 days is not enough. A treatment dose of Zithromax should be 12mg/kg/day. For a 50# child it should be 250mg/day. The usual course is 5 days, but with PANDAS children they usually require at least 10 days if not longer. Then, when you are ready to bump it down to a prophylactic dose, IMO M/W/F is not enough. You are better off decreasing the dose to 125mg/day, but given everyday. Some kids can eventually go to every other day, but you want to start with the higher dose, then decrease it. Every child is different, but this is what I feel works best.

You may really want to consider not giving a flu shot this year. Many, many PANDAS children react negatively to vaccines, especially flu shots.

There are a lot of parents on this forum who will have info for you. Hang in there!!

 

Colleen

[Megs_Mom]

Ok, so it is sounding like I have to go back on this about the amount per day. In May 2008, they only did titers. She never seems to have strep, just goes off the charts after an exposure. In June 2009, we ran tests for her with pediatrician - who "forgot" to run the strep titers.... Just a little frustrating... I have read your case study! It's so great that you all are doing so well. I love Diana - she and Laura M have been lifesavers for us, helping us better understand the course of the disease. I question myself a lot, but keep thinking that I cannot harm her by following both paths.

 

I am already accepting that the Cunningham test may be low given her stage right now. I will be oddly disappointed however - sort of wierd to say. I checked with them, and they confirmed that they will rerun if she gets it again.

 

Thanks for the advice - I am very glad that I finally posted here. Susan (Meg's Mom)

 

Great writeup! It definitely 110% sounds like your dd has pandas.

 

In May 2008 did the docs do a throat culture or just titers? When we first learned of PANDAS (3/08) our dd also had low titers but had a positive throat culture and perianal skin culture (2 mo. after likely strep infection; her assymptomatic sister was also throat culture positive) . That is a major pet peeve of mine...docs that do titers but not throat cultures. Lots of PANDAS kids have low ASO/anti-dnase B. Also, lots of PANDAS kids don't get classic strep symptoms, only behavior changes. But, they don't bother to culture for strep b/c the throat doesn't look red. Urrghhh.

 

Note: I am glad you are doing the Cunningham blood tests. Just so you know, the values might be lower if you dd is not in an exacerbation/and or she has had a course of steroids.

 

Re Azith: Our dd (55 pounds, was 45 when she started at this dose) has been on 250mg/day of Azith. since June 08 (over 1 year). Our immunlogist (Stanford Univ.) felt this would be a safe dose for her to be on for years. We recently did IVIG and would like to decrease the Azith. eventually, but don't want to change anything for now. When we've tried to lower the Azith (to 125mg) in the past, our dd has reacted. The immunlogist agrees with our theory that much of the benefit of the Azith is immune modulation/anti-inflammatory, not just strep prohpylaxis. (If you go to the www.PANDASnetwork.org site our dd is case #2...more hx and info.)

 

Personally, I think the doses they gave your dd are low. Esp. the 300mg/week for long term strep prevention is low. In the Swedo study they used 500mg/week of Azith. I certainly wouldn't go any lower than that.

[Megs_Mom]

Hey! You are SO lucky - free Montessori! No, we are switching this year - we were driving 30 min each way, and with all doctors appts and OT therapy, etc, we needed to be closer to work and home. So she is changing this year. Keeping my fingers crossed - will go meet with her teacher to explain. It's a small classroom, so we are hoping for fewer germs I guess we'll see. We loved Montessori, and she never got into trouble for being twitchy. Susan (Meg's Mom)

 

Hi! I'm glad to see you here and to read your summary about Meg too! Is she still going to Montessori school this year? My girls go to a public Montessori program here.

 

I agree about the antiboitic dose. I think, at least in the beginning it would benefit to go up to 250 mg.

 

 

Regarding long term strep prevention that you mention EAMom, would this be better split up or at one time each week?

 

Thanks!

[EAMom]

In May 2008, they only did titers. She never seems to have strep, just goes off the charts after an exposure.

 

Hi Susan,

it is really important to do the throat cultures as lots of PANDAS kids get strep (are they "carriers"? who knows) without the classic signs of strep (sore red throat, fever), but they will still culture positive...you will never know they have strep unless you culture. Plus, many kids (including PANDAS kids) don't get an elevated ASO/anti-dnase b when they do get strep (regardless of whether they have the classic symptoms or not). We don't bother with ASO anymore b/c our dd's were always low. We did measure dd9's ASO in April 09 (b/c we were getting blood for other stuff anyway and the immunologist was curious)...it was 17, basically undectable. At about the same time, her CAM kinase ll was 183% (high PANDAS range) and all her anti-neural anti-bodies were also significantly elevated.

 

Here is Buster's explanation of ASO/anti-dnase b http://www.latitudes.org/forums/index.php?...art=#entry29305

 

But, you are correct that many pandas kids react to just exposure to strep (ours does). But, unless you culture, you'll never know if your dd is actually getting it.

[colleenrn]

Susan,

Unfortunately, to my knowledge, there are no Zithromax studies with PANDAS using that dose. Dr. Swedo's study used 500mg/week. Here is a link to a study using Zithromax prophylactically with cystic fibrosis patients, but it is 250mg on Mon/Wed/Fri.

 

http://jama.ama-assn.org/cgi/content/full/290/13/1749

 

My kids have been on 250mg/day since October. My 6 year old weighs about 45#. When I have cut his dose to only 125 mg/day, his symptoms start to creep back.

 

Did you say that your neuro gave you six months of Zith? I am not telling you what to do or not do, but if I were in your situation, I would increase the dose on my own to 250mg/day for at least 2 weeks and see if there is an improvement.

 

I have posted about this before, but thought I would add it again. Two of my sister's children have PANDAS and her pediatrician is super conservative, BUT when they have strep her doctor puts her 8 and 10 year old on 500mg/day for 10 days. This pediatrician says that new research shows that with strep this higher dose is required. I have not been able to find research supporting this, but given how conservative this physician is, I believe her and trust her. This would not apply to your child quite yet given her weight. My sister has also noticed that her children respond better with taking all 500mg at once instead of 250 in the am and 250 in the pm, which I think is very intersesting.

 

Colleen