2 1/2 yr old w/possible PANDAS

[AmberM]

I'll be giving Audrey her 10th dose of the zithromax today and we have seen subtle improvements in anxiety. We've seen huge imrovements in hyperactivity, pacing, and grimacing. We haven't really seen any improvements in the rituals while walking around the block or driving down certain streets but I was able to take her to a new park that we had never been to. That would have been impossible a couple of weeks ago! Also, her emotional lability is pretty much the same.....I walk on eggshells all day.

 

We've decided to go ahead and continue with another 20 days of the zithro but I wanted to ask if this is considered good improvement? I read posts of kids having miraculous improvement within a couple of days. Don't get me wrong, I'll take any progress I can get, I just want to make sure we're doing things right. She weighs 34lbs and the dose we are giving is 75mgs daily....at least I think that's right (it's compounded)

 

thanks,

Amber

[Megs_Mom]

Hi Amber - welcome. I have an 8 year old that started with PANDAS at age 3. While it was clearly OCD and not autism, it was a terrifying change from her normal self. I am so glad that you are able to explore this with a good doctor - and that you are already seeing improvement. I think you said that you only had 10 days of abx? Has this been extended? I think that is very important, that you not stop now, as you are certainly not back to 100% at this point.

 

Has anyone suggested a steroid burst? I ask this with a lot of caution, as it can be diagnosic and/or give short term relief, but there are also concerns for a child this young, and I am not sure of the impact if she does have Autism.

 

I read your list of behaviors - and there is often co-morbid OCD with autism - but every single behavior that you listed sounds like OCD to me. Given her age, if she does not get back to 100% with medical therapy, she may have also learned some patterns of behavior. At some point in the future, if you want to do ERP therapy for OCD, there is a great group in FL that works with "the wee little ones" on OCD therapy, so that even tiny kids can learn the tools. I would not suggest this yet, although reading about the therapy for OCD might help you develop some tools that might mildly help her as she gets back to 100%. You could modify some of these at home, as she gets better. A simple good starting place is "what to do when your brain gets stuck" - it is available on Amazon.

 

Hoping that we hear more good news from you soon!

[Fixit]

the thing that is hard is the wondering...but it goes back to you are the mom....you know her better than ANYONE ever will,,,,and though suttle the changes are coming....it is hard to be patient.....

i think dcmom said it took a month of biain to changes start.

i used to get a slight resopnse at first and then a drop 10-14 days later and then remission in 4 weeks......those were the good old days!!!!!!

i am trying to let myself know,,,my son is 10, not 5 or 7 and his body has changed, his conditoin has changed....and he's never had it for so long....and as many have said what worked before, may or may not work now or work differently......

can i get an amen on that.....cause i can't believe i can say that here and try to reaffirm to myself....

 

and yest some of the things become a habbit you have to break

 

Hi Amber - welcome. I have an 8 year old that started with PANDAS at age 3. While it was clearly OCD and not autism, it was a terrifying change from her normal self. I am so glad that you are able to explore this with a good doctor - and that you are already seeing improvement. I think you said that you only had 10 days of abx? Has this been extended? I think that is very important, that you not stop now, as you are certainly not back to 100% at this point.

 

Has anyone suggested a steroid burst? I ask this with a lot of caution, as it can be diagnosic and/or give short term relief, but there are also concerns for a child this young, and I am not sure of the impact if she does have Autism.

 

I read your list of behaviors - and there is often co-morbid OCD with autism - but every single behavior that you listed sounds like OCD to me. Given her age, if she does not get back to 100% with medical therapy, she may have also learned some patterns of behavior. At some point in the future, if you want to do ERP therapy for OCD, there is a great group in FL that works with "the wee little ones" on OCD therapy, so that even tiny kids can learn the tools. I would not suggest this yet, although reading about the therapy for OCD might help you develop some tools that might mildly help her as she gets back to 100%. You could modify some of these at home, as she gets better. A simple good starting place is "what to do when your brain gets stuck" - it is available on Amazon.

 

Hoping that we hear more good news from you soon!

[thereishope]

In regards to OCD, with my son he did have residual OCD with his third exacerbation and we had to work with him to overcome it. When their so little, they have no idea what they are doing is not within the "norm". It may not even bother them (it didn't bother my son). To them, it's just life. I think changing up her routine is great. As you may know, that can be very hard to do with a child with OCD. That can send them into a meltdown. Do what you can to "change it up", but some of the rituals and habits that she has had the longest might be the last ones to go.

 

The fact that you've seen huge improvements in some areas and some improvement in others, I would agree to continue with the abx. Not often does a child improve 100% within 10 days. Again, every child's timeline is different. But (assuming the child has found the right antibiotic for them and antibiotics alone will work) it can take months to fully recover.

Edited April 30, 2010 by Vickie

[AmberM]

Hi Meg's Mom, thanks for the help. We are pretty sure that my daughter is also autistic......up until recently we thought that was her problem. She doesn't really present similar to any of the autistic kiddos we see at therapy so that is why I'm cautious to say she is definitely autistic. Maybe I'm just being hopeful.... She is nonverbal for the most part so this her most prominent autistic feature. As far as a steroid burst....it would probably be beneficial as we've talked to her g.i. specialist about it before for her gut inflammation. I've heard of nonverbal kids speaking for the first time while on steroids due to the drop in inflammation.

 

Since we are seeing improvements, our DAN! suggested continuing the abx for 30 days and then regrouping to see where we are at. Audrey may be somewhat of a special case because she was affected very early on by "something" and I don't feel that I have a good grasp of what normal is for her. We think she had a bad reaction to her hep b vaccine and by 3wks of age, was inconsolable and screamed all day until around 18mos of age. She continued to develop normally though and hit all her milestones until around 12 mos of age. So, I guess I don't have a good feel for what to expect as far as improvements. I just know that in the past 10 days, I have seen a happier, calmer girl than I have ever seen of her and that makes me very excited!

 

I will check in to the book, I could use all the help I can get!

-Amber

[Stephanie2]

Amber, ask your DAN doctor about spironolactone. Our DAN uses it for pandas and immune-related autism issues. I just started my 2 yo on it last night and boy was he talking up a storm today and also a little happier and wanting me to play with him (and he is only on half the dose right now)! Here is a link to our DAN website and the paper that they did on spironolactone:

 

http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

 

I believe it also helps gut inflammation which my 2yo has bad (high eosinophil x protein).

 

Also, many pandas/autistic kids take LDN (Low dose naltrexone) with great results. This will be my next venture if spiro gives out on us in the future...

 

Stephanie

[AmberM]

Hi Stephanie, I have looked at both the spiro and the LDN for Audrey.....we must be on some of the same forums. Did you run any blood tests before starting the spironolactone? I'm just wondering because I was checking into it thinking Audrey could have testosterone issues because of her temper and irritability. This was before I learned about the possibility of pandas. I give my grandmother with parkinsons LDN with fabulous results. That's been a true miracle drug for her! Audrey is a really light sleeper and I worry about having to put the cream on in the night. But if it works, I would find a way. I will talk to our dr. about this for sure. I appreciate the advice.

-Amber

[AmberM]

Ya, I'm pretty sure the ocd doesn't bother Audrey at all. She gets insanely angry and anxious if I try and interupt her though. ABA therapy was absolute torture because the therapists would try and block her from her routines for 2hrs straight. I'm gonna have to find a better way to ease off of these. I am trying to switch things up every day.... I'll work up to the biggies as we see progress. It's really heartbreaking to see her so upset.

 

Ok, well I'm glad you guys are telling me that any improvement is considered a success. I was afraid that if we didn't see miraculous changes, that she wouldn't be a candidate for this treatment. Then we'd be back to square one with our autism treatments and we're quickly exhausting the options there. Sometimes I worry that I'm just imagining improvement because I want it so bad. Thanks for the support.

-Amber

[thereishope]

Many use Buster's charting system to track progress.

 

Buster's Charting System

http://www.latitudes.org/forums/index.php?...ic=6685&hl=

[Stephanie2]

I am on many of the autism forums, as I imagine you are. Well, our DAN doctor prescribed spiro for my 5 yo when his porphyrin test came back. One of the levels came back indicating high brain inflammation (neopterin or biopterin?). Apparently, spiro reduces inflammation, but also modifies any autoimmune issues as well. So he said that spiro had my son's name written all over it! It does appear to be reducing his moodiness/irritability/OCD quite a bit! So the other day, my 2 year old entered into a sudden pandas episode. I got our DAN on the phone that afternoon and asked him for an antibiotic and also spiro. It is hard to say what is working, but my 2 yo seems to be recovering quite rapidly! It will be interesting to see what happens when the antibiotic is done and we go back to prophylactic zithro. If he doesn't get fussy again I will assume the spiro is working. OH! And by the way, ever since I started him on that stuff he has been talking up a storm! Very excited for that...

 

I have read some really great success stories for both spiro and LDN in terms of pandas. I am under the impression that LDN modifies the immune system, but do you know if it also reduces brain inflammation? I have no idea. Also, LDN doesn't affect hormones. I do think that spiro has helped my son to stop going into the bathroom to "play" with himself!!

 

When I research spiro I'm not thrilled about what I read, but with everything else you have to weigh the good with the bad. For now, I am happy with what I am seeing in both my boys and I will take some time to research LDN and see if it is considered safer...

 

Oh, and they have both started sleeping through the night with spiro! My 2 yo was a hugely light sleeper until now!! Just FYI...

 

Let me know what you decide regarding these!

Stephanie

 

Hi Stephanie, I have looked at both the spiro and the LDN for Audrey.....we must be on some of the same forums. Did you run any blood tests before starting the spironolactone? I'm just wondering because I was checking into it thinking Audrey could have testosterone issues because of her temper and irritability. This was before I learned about the possibility of pandas. I give my grandmother with parkinsons LDN with fabulous results. That's been a true miracle drug for her! Audrey is a really light sleeper and I worry about having to put the cream on in the night. But if it works, I would find a way. I will talk to our dr. about this for sure. I appreciate the advice.

-Amber

[AmberM]

It sounds like this spiro has been a miracle drug for you! I'm gonna have to ask about this. Have your kids reported any dizzyness or anything? I just ask because I used to take spiro for PCOS and it caused my blood pressure to drop and I was constantly dizzy on it. But the dosage could have been much much higher in comparison and I have low blood pressure to begin with.

 

I don't know if LDN reduces brain inflammation but I imagine it could. I just got back from the Taca seminar today and Tim Bui was one of the speakers. He kept stressing that the brain is so connected to everything and brain inflammation can really come from anything......allergies, pollution, oxidative stress, bacteria overload, etc. We did the autism panel from the french lab and the neopterin/biopterins came back normal as well as the immune markers. But her creatinine only came back at 503. I heard that if it is under 1000, the results can be off.

 

My daughter "plays" down there when yeast is really bad. She does all kinds of crazy stuff when her yeast is high!

 

Sleeping through the night is always a good thing!

 

I will let you know if we decide to try anything. I think our doctor gets a little irritated with me because I try to add a million things too fast. SO I'm trying to be patient, but it's hard.

 

-Amber

[AmberM]

Many use Buster's charting system to track progress.

 

Buster's Charting System

http://www.latitudes.org/forums/index.php?...ic=6685&hl=

 

that's perfect, thank you!

-Amber

[airial95]

Amber,

 

My son is the same age as your daughter and we were dealing with many of the same issues ( without the autism dx, although our peed just ordered a full assessment b/c he now suspects aspbergers as well"). He's been on zith for about 4 mo now and we've seen about an 80% improvement. We still have backsliding, usually a few days at a time when exposed to something.

 

We saw mild improvements at first, but it took almost 15 days on the zith before we saw anything really significant! So hang in there

[AmberM]

80% improvement is very promising! That helps me to hear that it took a while to see significant improvement. This weekend was probably the best I've ever seen Audrey so I'm hoping the gains stick! Thanks for sharing.

-Amber

 

Amber,

 

My son is the same age as your daughter and we were dealing with many of the same issues ( without the autism dx, although our peed just ordered a full assessment b/c he now suspects aspbergers as well"). He's been on zith for about 4 mo now and we've seen about an 80% improvement. We still have backsliding, usually a few days at a time when exposed to something.

 

We saw mild improvements at first, but it took almost 15 days on the zith before we saw anything really significant! So hang in there

[thereishope]

Amber, the first time PANDAS surfaced in my house, it was on my son's 5th birthday. About 2-3 weeks later we found out he had strep (no symptoms) and went on abx. The overall recovery, even for catching that rather quicky, was still around 6 weeks. Then fast forward to his third exacerbation. I believe we caught that strep withing 12 hours of PANDAS symptoms surfacing. It still took about 5 months to recover from that one due to residual OCD.

 

I know I'm lucky with those timeline compared to most. But just trying to show that you may not 100% even in the first couple weeks.

Edited May 3, 2010 by Vickie