new here and need an opinion

[michiganpandas]

my 8 year old daughter was just diagnosed (kind of)...doctors seem to be not in any kind of hurry to help her....she tested positive for strep 2 x's since the beginning of march..(for first 5 days of the strep no antibiotics were given and she was soooo moody (this is sooooo not her!)....then she was finally tested for strep and given 14 days of amoxicillin...2 days after that ended is when she totally changed....ocd, pacing around the house, panic attacks, and tics...severe separation anxiety and afraid to do anything fun.....this was not her at all..(she normally is very well behaved, very athletic, very emotionally stable)......anyways, she went for 2 weeks like this and doctors kept saying she was not sick....finally after the 2 weeks they swabbed her for strep and it came back positive again ....that's when the doctor told us about PANDAS....so after MANY doctors appointments this is the "treatment" we have gotten so far.....5 days of azitromycin and 20 mg's of zoloft.....this started around april 12th.....She continued to be HORRIBLE...complains of throat and stomach hurting, tics, trouble falling asleep, wants to bite things,etc........but, now we have had 5 days of normal behavior (well at least we are about 70% better) !!!......is there any way that the improvement could really continue or have all of you experienced improvement and then went back to the bad symptoms again???

[rockytop]

BUMP!!

 

try pandasnetwork.org and email them- they can really be helpful to point you in the right direction- though everyone here will also!

 

Where do you live?

[michiganpandas]

BUMP!!

 

try pandasnetwork.org and email them- they can really be helpful to point you in the right direction- though everyone here will also!

 

Where do you live?

 

 

 

michigan...about 45 minutes from detroit

[nicklemama]

I sent you a private message about our small Michigan PANDAS support group.

[AmySLP]

This was my daughter's pattern-ABX for 10 days, then would be postitive for strep 2 weeks later. Unfortunately this went on for months, before we finally saw a different doctor who said we had to change the type of antibiotic (ABX) and continue for much longer. Your daughter's onset is so recent, seek out the help of the support groups they will guide you in the right direction.

[michiganpandas]

This was my daughter's pattern-ABX for 10 days, then would be postitive for strep 2 weeks later. Unfortunately this went on for months, before we finally saw a different doctor who said we had to change the type of antibiotic (ABX) and continue for much longer. Your daughter's onset is so recent, seek out the help of the support groups they will guide you in the right direction.

 

 

 

thanks for responding....i apologize...i was thinking this was a support group that could provide some guidance....thanks again

[LNN]

Michigan Pandas

This is an online support group and in reading your post, perhaps your questions haven't been addressed..

First, you may want to browse through the "helpful topics" section at the top of this forum - you'll find many helpful discussions on the science behind Pandas, what it is, doctors who have been helpful, ideas for behavior therapy...

 

next, a strep (or other bacterial) infection can trigger an autoimmune response in some kids. This response triggers many of the behaviors you've listed. Since your daugther re-tested positive for strep, it seems very possible that she has Pandas and there are some steps you might want to consider as you move forward.

 

First, the autoimmune response will continue as long as there's an active infection. If your daughter has Pandas, she needs to be on full strength antibiotics until she clears the infection (most members here have had the best results with azithromycin or augmentin for strep). In theory, once the infection is cleared, you may continue to see symptoms for 6-8 weeks but it should be a downward trend in severity - it takes time for the body to clear the auto-antibodies (the antibodies that attack self) and for inflammatory cytokines to subside. In reality, some kids can't seem to shake the infection or find there are other things that may keep them from returning to baseline.

 

For Pandas kids, they are often susceptible to more than just strep (known as PITANDS) and many kids find it best to stay on a prophylactic dose of antibiotics in order to prevent future episodes. But to find a doctor willing to support this protocol, you will likely need to see a Pandas specialist. There are 4-6 in the country and each has their own preferences for treatment. So who you see depends somewhat on your ability to travel and on your personal feelings on specific treatments (long term antibiotics, IVIG, etc).

 

Being so new to this, I suspect you haven't had time to sort it all out. For now, I'd advocate for full strength antibiotics for as long as you can get them (3-4 weeks) and insist on re-checks until she's cleared. You should also know that in Pandas kids, SSRIs can be "activating" - meaning that a small dose can have a big effect. So if your daughter is on 20 mg zoloft, it's possible that dose could exacerbate her symptoms instead of alleviate them. If you feel that may be the case, you can consider reducing the dose to see if that's more helpful. http://mbldownloads.com/0806PP_Murphy.pdf

 

The local Pandas support group can probably give you some good In-person help and answer more specific questions. If my attempt to answer your post just leaves you more confused, please feel free to ask again. Welcome to the forum!

Edited May 4, 2011 by LLM

[michiganpandas]

thanks! that does help....i'll look into the zoloft....i hate that she is on it....but, she does have some improvement now (far to go, but at least we can get out of the house and some tics are seen less often)....they wanted to up her dose of the zoloft last week, but i refused so your post made me feel better that i did that. She did test negative for strep 1 1/2 weeks ago so again, your response gives me some hope that MAYBE she is slowly getting better.....also, i had no idea what PITAND meant so thanks also for explaining that....I guess I should assume that since she has never had problems with other illnesses then she would be just diagnosed with PANDAS?

I'm sooo sorry that everyone here is dealing with all of this....I feel like it's just not real

[thereishope]

Welcome to the group. So, she finished the Azith on April 17, do you know when she was retested? If it was 1 1/2 weeks ago, that might have been too soon. You can get false negative strep test while on antibiotics and soon after.You could take her once again to get tested when she is at the point of being off antibiotics for 3 weeks.

 

At point in relation to taking the Azith did you see improvement? If you see a steady improvement (even with a bump here and there) it could be that she is healing. However, you have to realize a bump is different than behaviors indicating possible infection. I can't really tell you what the difference is, but your gut would know.I wish the healing happened as fast as the downward spiral, but it does take awhile.

 

Also, you should test the whole family for strep, even if they do not have symptoms.

 

Here are some helpful things to read that you may find helpful

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

[JJMom39]

Welcome to the forum. This is a wonderful place for advice, information and support.

 

I ditto LLM's suggestion to advocate for full-strength abx for as long as you can get them. When my ds8 was diagnosed a couple of months ago, he was first put on Omnicef for 5 days, which did not help him. He was then put on 5 days of azithromycin. This helped him a lot, but a few days after he finished the azith, I was told by two other dr's that a strep infection needs to be treated for 10 days, regardless of what abx is being used. So even though azith is typically used for 5 days, for a strep infection it should be used for 10 days. After that, my son took another 5 days of azith, and then a subsequent 5 days because I wanted to make sure that he was fully covered. That said, if a child has not cleared the infection after finishing treatment they should continue taking an abx until it is cleared, so 10 days might not be enough for every child. It's also possible that if an infection has not cleared a new abx will be necessary. As already said, the timing of re-testing is important. If the swab is negative have a culture done as well to make sure there is no infection. After active infection has cleared, many PANDAS kids take azith or augmentin prophylactically, but there are other abx that are used. Sometimes it takes a little bit of experimenting to find the one that works for your child.

 

If you are considering consulting with one of the few specialists, it can be helpful to make an appointment now as there can be a long wait for some of the docs. The helpful topics section at the top of the forum has information on these specialists.

[EAMom]

BUMP!!

 

try pandasnetwork.org and email them- they can really be helpful to point you in the right direction- though everyone here will also!

 

Where do you live?

 

 

 

michigan...about 45 minutes from detroit

 

Definitely get on the Michigan support group. They hopefully have info. on local PANDAS friendly docs. For example, I know Worried Dad has a DAN! doctor who is supportive and willing to rx antibiotics. It is really helpful to have a local doc to rx antibiotics even if you eventually travel to a specialist (Dr. B., Dr. K. Dr. Latimer, etc) for IVIG, PEX, or a 2nd opinion.

 

Also, be sure to test family members (throat culture, do the 72 hr culture if the rapid is neg). You want to make sure there aren't any assymptomatic carriers in the family (who can reinfect your PANDAS dd, also PANDAS kids can react to just exposure.)

 

You may have already figured out, but what has been really critical for most (all?) PANDAS kids is long term full-strength antibiotics. My dd (for example) has been on full strength antibiotics (mainly 250mg/day Azith.) for 3 years at this point (she's in 5th grade now). We don't plan to stop antibiotics anytime soon...will probably continue until adulthood. My dd has also had high dose IVIG 2x. For the majority of PANAS kids, it's not a case of "10 days of antibiotics will do you". Hopefully one day the medical community will understand that.

 

Definitely read the links (FAQ and PANDAS fact sheet) that Vickie posted.

 

It sounds like your dd is pretty early on in this disease. Hopefully, with early aggressive treatment (antibiotics!!!) you can prevent some long term problems and the eventual need for IVIG and/or pex.

 

PS don't forget to get new toothbrushes/toothpaste a couple days into a course of antibiotics. Also, don't let your PANDAS dd share toothpaste with others...get her her own tube.

Edited May 5, 2011 by EAMom

[EAMom]

This was my daughter's pattern-ABX for 10 days, then would be postitive for strep 2 weeks later. Unfortunately this went on for months, before we finally saw a different doctor who said we had to change the type of antibiotic (ABX) and continue for much longer. Your daughter's onset is so recent, seek out the help of the support groups they will guide you in the right direction.

 

 

 

thanks for responding....i apologize...i was thinking this was a support group that could provide some guidance....thanks again

 

I think what Amy was saying, is that your dd is such an acute case that she might have a chance of complete resolution with antibiotics ... which can be done if you can find a supportive local doc (thus the recommendation for the Michigan Support Group). (I don't know if we have any Michigan docs under our helpful docs thread?)

 

Since your dd is an acute case, you might also consider applying for the NIMH study (while concurrently pursuing antibiotics). Here's a link with info:

 

http://clinicaltrials.gov/ct2/show/NCT01281969

Edited May 5, 2011 by EAMom