Stephanie2

I have seen my boys get a "stomach flu" type of presentation before with strep, but usually it involves vomitting. This time they both have diarhea only and one complained of nausea, sore throat, congestion and had a little OCD. The other has diarhea and, as of this evening, sudden-onset emotional lability (haven't seen his usual OCD/fears). As some of you know we are doing homeopathy and the "cues" for strep/pandas are much different and appear to be much more subtle so I thought maybe the diarrhea might be a piece of the puzzle, I don't know. In any case, I gave my oldest a dose of his remedy and the sore throat and OCD went away immediately. I gave the other a dose of his remedy tonight right before bed, he did calm down and passed out, I will know for sure if it is going to deal with the emotionality in the morning.

Yay, here's to continued progress!!!

That is so good to know in case we ever need it again in the future! I am too excited about this!

Wow, I didn't know they were covering it these days! They must be "scared" of us or our kids...? I don't know...

We were forced to seek out other treatment options due to severe side effects from antibiotics. My boys are doing phenomenal now with classical homeopathy. We use Pierre Fontaine: http://www.asdhomeopathy.com/

Just wanted to report that last night my husband found out that we are being reimbursed for our out of pocket expense of my son's IVIG treatment from March 2010. He went up the chain of command and they told him to write a "letter of reconsideration". I wrote one out, describing why my boys needed IVIG and why they needed out phone consults covered. As far as pandas, I just basically described how my boys are incapacitated by it, etc. We were not able to show any immune deficiency or CVID. They covered it strictly on pandas. Has anyone else had this happen? Maybe they made a mistake? Or maybe they felt that since we were so persistant that they wanted to get us off their backs - LOL! Sometimes I think I would pay my husband $4000 to "back off"! LOL!

http://www.asdhomeopathy.com/ Also, a couple weeks ago I tried to link his lecture at Autism One here but it wasn't working. Pierre said that he is trying to get the full presentation linked to his website so you can watch for that in the coming weeks. He does mention pandas a few times.

In my younger child, he would just have your strictly autistic features: lack of self-initiated communication or social interactions, etc. We started treating the ASD (biomed) and he improved tremendously. Then a couple months later - BAM - sudden onset rages and strange eye movements. Took him to Neuro who asked if he had strep recently. the rest is history. In my older son, he always had subtle autism features: strange play habits, strange social habits, very hyper, etc. But then sudden onset emotional lability, separation anxiety, ragey, tics. I find that the two disorders are very distinct in my kids. You really can't miss it. I think a lot of people confuse the "rigidity" of OCD for autism. No where in the DSM for autism do you see obessessive behaviors. That is OCD and most likely pandas. I think lots of kids with pandas are going undiagnosed in the autism community unless they have a good DAN doc.

We had some good success with biomedical interventions (DAN protocol) which is a standard and natural approach to pandas. But we have gotten the most success with classical homeopathy under the care of Pierre Fontaine (who specializes in autism and pandas): http://www.asdhomeopathy.com/

A woman once told me that if you take too much gaba you might feel numbness or tingling in your extremeties. I'm so glad she told me that b/c I tried it recetly on my son and 30 minutes later he told me his fingertips felt weird! I asked him to explain, he said he couldn't feel them! So I lowered his dose...but he doesn't really need it anymore, I was using for hyperactivity which is why most use it I believe. 5HTP has worked great for my kids in terms of depression/OCD/anxiety. I highly recommend it, but over time it may stop working just like all SSRI's... For my 30 lb child I have used 50 mg, twice a day. For my 50 lb child I used a total of only 75 b/c any more than that gave him leg cramps. My husband and I have used 200mg, twice a day. All under the guidance of a doctor. In any case, we have all switched to classical homeopathy with better, more lasting success than SSRI's or 5HTP.

I just realized this link is not working, I will repost later if I can find the right one.

http://www.ustream.tv/recorded/14991135 Pierre Fontaine's presentation on classical homeopathy for autism and pandas.

To tag onto to LLM's recommended tests, ask Scott to run the Cytochrome P450 test (not sure of the official name, he will know), which should help determine how efficiently she is able to excrete some pharmaceuticals, in general. It was suggested that I run this on my 6yo since many meds (including singulair, zyrtec, steroids, antibiotics to name a few) have made him psycho in the past, but I never had it run. I think I have enough experience under my belt to know that it will come back positive... Oh, and that's great that you are getting some answers. Don't ever give up digging, you will get there.

I agree with mommd that most of our kids probably have lyme disease underlying. I was about to go down that trail right before I started homeopathy. I am in touch with many moms whose children have autism/pandas and doing homeopathy. One of the moms had a diagnosed lyme kid who needed antimicrobials 3 times per day to function. She found that within a week of his homeopathic remedy he was able to go down to 2 times per day, then 1 then none. This child is fully recovered one year later of lyme, autism, pandas, etc. and on no meds and no supplements. This is a huge movement now within the autism community b/c the word is getting out and people are finding it to be much more simplistic and effective of an approach. I'm not trying to contradict anyone at all, just pointing out the homeopathy, too, can very effectively deal with lyme without all the side-effects of antibiotics.

That is great to hear Stephanie -- but you have told us everything that they are not on, what are they on? What is working so well for you now? Specifics please:) We do classical homeopathy which consists of the patient receiving one "constitutional remedy" which is prescribed based on the patient's specific symptoms and overall "constitution". The remedy does not directly kill any particular microbes, but it stimulates the body to heal itself. There are over 3500 homeopathic remedies that the homeopaths choose from so the reason I don't usually mention my boys' remedy is b/c I don't want a bunch of people running to whole foods and buying it and having no idea how to dose it or even if it is the appropriate remedy for them. Not to mention the potency needs to be increased at intervals which is a decision that needs to be made with the homeopath and the increased potencies are normally ordered from London (increasing too soon can run the case into the ground, etc.). Very complicated. But with all that said, my boys are on a remedy called Ignatia Amara I do have a friend who tried it just based on my boys' results and she got immediate results (stopped raging and became completely placid within 20 minutes and stayed that way for a few days). But her son happens to be very similar to my boys in their pandas presentations. There really is no way someone could maintain those results without a homeopath... Oh, and my boys are also still on some supplements from our biomed days: Vit. D, Vit. C., TMG, Folinic Acid, Fish Oil, probiotics, magnesium, vit. e, multivitamin, off the top of my head (some of that is for my younger son's speech apraxia, though).

We started out with Scott Smith PA in New Jersey and Dan Rossignol, MD in Florida, both very thorough and competent, we got great results, both have pandas boys of their own, both on PANDAS Resource Network Medical Advisory Board. They practice integrative medicine, which means they will do all the standard pandas therapies including ivig, but they also integrate supplements to support the immune system and other functions in the body which affect pandas. They will also test the gut periodically to make sure secondary infections (ie yeast or clostridia due to chronic abx use) are kept in check, which can cause a whole new set of behavioral symptoms, this is an area that most pandas docs miss and is crucial for the success of treatment for some kids. After awhile, though, my sons developed severe side effects to antibiotics and steroids, and IVIG was not covered by insurance. I was forced to seek out a well-respected homeopath in NYC who has a great reputation within the autism/pandas community, Pierre Fontaine. Pierre has a one year wait list, but he has a new colleague working with him who we now use, Angelica Lemke. We have had more success in the last 3 months with less meds and doctor visits than we have had in the last 4 years of this nightmare (actually my boys are off all meds, abx, steroids, ibuprofen, immune modulators, psych meds, etc.). Both of my boys have responded tremendously and have withstood strep exposures in the meantime.

I didn't read the other replies but in our experiences steroids caused steroid-induced psychosis in one of my boys (later to find out it was probably related to the fact that he was taking it concominently with Ketoconozole), and another scenario we have had is that steroids do a number on gut infections, it could be clostridia (the repeating phrases is one clue in my house, so is the aggression). With sporonox, it could be that the liver could not excrete it quickly enough so it built up and caused behavior issues, OR it could be that by killing so much yeast, that allowed bacteria (clostridia or other) in the gut to take over. For my boys, if I treat yeast they would both have clostridia within a few days. with all that being said, I am now treating all of this with homeopathy with very good success, but that was our experience in the past with these meds.

Johnsmom, yes you can use bactroban but it is not as effective as mupirocin. I went down this road with recurrent impetigo and we treated the nostrils. I ended up using a natural antibiotic ointment that worked better than all of them, I suppose b/c there was no resistence issue.

Is Scott monitoring her gut during this time? Steroids can do a number on the gut, thereby increasing OCD. Then there is the idea that the steroids are making lyme worse. Make a list of the gains AND the things that are getting worse and let Scott help you sort it out (or email me). I found that when I did the 30 day taper on my 6yo, his aggression got worse b/c of steroid-induced psychosis, but in the end he was PANDAS free (meaning OCD and such went away). With that being said the psychosis was so bad that I will never give either of my children steroids again unless life-threatening issues arise. BUT what you describe does not sound like psychosis but a worsening of OCD which makes me think gut or lyme issues. In my opinion, pandas-related OCD should not get worse, only stay the same for a while or reduce.

My son went psycho on Singulair, especially after we added zyrtec (I'm guessing they had a synergistic negative effect, OR the zyrtec and singulair competed for excretion, increasing singulair's side effects). One of the worst times ever, similar to pandas. BUT my son reacts that way to many meds (remember back in Jan, the steroid psychosis, 4 hour rages, almost went to ER?).

Just a reminder, make sure you are following her gut. Steroids are hard on the gut and you may need to do an OAT test when the taper is done to make sure she is not left with residual yeast/bacteria which may cloud the picture KWIM?

I don't think the issue is that the kids are "allergic" to strep, but that the strep is making them hypersensitive to the environment. The only reason I say that is that my son was actually reacting to eggs, nuts, dogs...things that are commen allergens but that he had never been allergic to before. Our ped said that she agrees that kids get hives with strep, I guess she has seen it before.

Heather, yes you are right it can work miracles and yes you have to be patient. And it is especially hard to transition a pandas child who is on abx. I have to say that one of my sons transitioned beautifully, the other had a current strep infection and I kept running back to the abx, which did not clear it. In the end I took the leap and went full force homeopathy (high potency, high frequency) for a couple weeks and we finally got a neg throat culture. It has been a scary 12 weeks letting go of the meds, but has worked out so well for my boys. Their remedies have also cleared out clostridia which was caused by the abx. Best of luck with the IVIG, I'm sorry about the headache, etc. Are you able to get steroids from your MD? It might be too late, but when my son got the headache/nausea from IVIG a year ago, I immediately gave him a medrol dose-pac that was prescribed to him and it stopped that reaction in it's tracks. Also, what about an acute homeopathic remedy for that reaction? I bet your homeopath can help you select one. I have gotten some major releif here with acute remedies (asthma attack, hives from a spider bite, bruising/swelling/pain from broken foot, etc.).

Since this post was resurrected, I will comment that his strep is gone but I have not "provoked" him to see if the hives are gone yet. He did react to a dog 3 days before the negative throat culture so we will see. I am really hoping I can add eggs back to his diet.

Yes, Scott prescribed spiro for both of my boys and they both did respond to it (neither was in a severe exacerbation at the time, but I did notice a reduction of the symptoms that were there, including an easier time falling asleep and stay asleep for my youngest). I did not notice any negative side effects that I was aware of. I have been able to discontinue one of my son's spiro and will probably discontinue the other in the coming weeks/months. For the purposes of immune modulation and decreasing inflammation, spiro is prescribed in a pretty low dose so as not to elicit side-effects in these kids. It has a very long history of use for other things, you could research the safety profile in that context.