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Our update...DS6 and DS3 PANDAS boys.


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Thought I would pop in and give an update on my boys. After having all treatment options shut down on us (severe side-effects from antibiotics, psychotic rages from steroids, and uncovered IVIG) I was forced to seek alternative treatment - homeopathy. I sought out several other moms who were able to get their severe pandas kids off antibiotics with the help of a specific homeopath in NY, Pierre Fontaine (who specializes in Autism, speakes at Autism One, etc.).

 

We are now 5 weeks into treatment and the response from my 6yo has been nothing short of miraculous! He no longer suffers from pandas symptoms or the infections that were caused by antibiotics and were causing rages. More importantly, he was repeatedly and directly exposed to strep within our home for about 3 weeks during this time and did not suffer an exacerbation (he is off all antibiotics and herbs). I will say that at one point during the 3 weeks of exposure, he started getting stomach aches, exhibited mild fears at bedtime and did some mild, transient baby talk. None of this would warrent a pandas diagnosis, there was none of the OCD or severe emotional lability that is his classic presentation. I treated him with what they call a "strep nosode" in homeopathy and these symptoms went away within 24 hours. I then took him to the ped for a rapid and 40-hour culture, just to be sure he did not have an infection, they both came back negative (his brother, who repeatedly sneezed on him, shared cups, etc, tested positive on the same day. I have never had one child get strep and the other not at least become infected or have a severe microbial exposure and exacerbation). I will also mention that the typical heat and exercise intolerance that he used to suffer from are completely gone. His left-over autism symptoms are gone. He has gone from 25-30 meds/supps per day to 13. We used to dose meds 5 times per day, now only twice. In short, his life (and therefore our lives) are completely different!

 

Now onto ds3. He developed a strep infection 3 days after my older one started his homeopathic remedy. However, he himself had not yet started his remedy so we were behind the 8 ball on that one. Looking back, I should have started a course of zithromax right away but I was so excited about my older son's success that I "held out" for a few days until his initial consult. Bad idea! We tried remedy after remedy over the course of several weeks, each only offering 2 days at a time of relief. I will say, however, the remedies did obliterate an ear infection, bronchitis and a persistent asthmatic cough that would have required the use of a steroid. The underlying strep infection, however, persisted. We would get rid of it (as evidenced by negative rapids) and then it would come back (as evidenced by positive rapids). After 3 weeks of this, I did 5 days of high-dose zithromax. I am waiting on the culture results, but I will say that zithromax, at that point, hardly made a dent in his pandas symptoms. The DAN doc is suspecting that the infection is gone but the inflammation is out of control b/c we waited so long to start the abx. He may be right.

 

One of my friends (fellow pandas mom) tried my older son's remedy on her son and got instant results (within 20 minutes, which is what we experienced), so I decided to try my older son's remedy on my younger son. I saw an immediate improvement. We are now 48 hours into it, so I am not sure if it is going to hold, but I am confident that if I persist, I will be able to help my younger son, as well. Things are tolerable, and he is off antibiotics, so I can't complain.

 

I hope this helps someone, who like me tried it all and either did not get success or experienced intolerable side effects. If you look on my blog, last week I posted several other pandas success stories, as told by a couple other moms. There are also several interesting pandas/homeopathy links.

 

The Light - Stephanie

Edited by Stephanie2
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That is wonderfull about your boys. I was not aware of others treating thier Pandas kids with homopathy. How long did your son have Pandas before you started treating? Was he sudden onset? I will check your web site out. Thanks.

 

He was sudden onset at the age of 20 months (my younger one at the age of 15 months). We got the diagnosis at the age of 4.5 and have been seeking resolution since then. We did manage to get pandas under control with mainstream meds (antibiotics, IVIG, steroids, spironolactone, LDN) but he still got strep infections several times per year (like 5), then would suffer the antibiotic side-effects in between (severe rages, yeasty behavior, etc.). It was a vicious cycle that we couldn't seem to escape.

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Thanks for the update Stephanie. I'm so happy that you have found a resolution for your older son's PANDAS symptoms!! I hope you'll soon find a similar resolution for your younger son.

 

We recently gave our ds9 (non-PANDAS) a constitutional remedy to help with his rage and hyperactivity symptoms he had been exhibiting (coincidentally or not just prior to being diagnosed with Strep). He took the remedy about 6 weeks ago and as a side note we also modified our family's diet at the same time (no refined sugar, minimal carbs, minimal yeast, no milk, no prepared foods, mostly organic) and we started him on fish oil and standard multivitamin. Since that time we've noticed a significant difference in his behavior! He no longer has rage episodes that last for hours. He gets angry now and then, but it's normal kid behavior that he can easily snap out of. We did see a brief resurgence in his rage and hyperactivity symptoms immediately following him having 4 teeth extracted, but things settled down again after about 4 days. He admits that he feels much calmer and that his anger doesn't spiral out of control like it used to. It's so nice having our pleasant boy back again! :)

 

We're considering trying homeopathy for our PANDAS ds11. He's doing OK with antibiotics, but recently he's had some setbacks with anxiety, depression and mild OCD kicking up again. I still feel like we're treating with band-aides and not getting to the root of the issue.

 

From what I understand about Homeopathy, there are several different constitutional remedies for various symptoms, personality and phenotypes. Was your son treated with his constitutional remedy? Or was he given a mix of remedies to help deal with his PANDAS symptoms specifically. Also, was the homeopathic practitioner familiar with PANDAS? A very good friend of mine has studied homeopathy, but of course she's never treated PANDAS. I'm just wondering if that really makes a difference, since ultimately they treat from a holistic point of view.

 

Thanks again for sharing your success story with alternative treatments.

 

Take care,

Vicky

Edited by VickyLH
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That is great about the rages going away in your son! That has been the biggest plus so far for my 6yo as well. He has had rages (hours long, as well, despite medication) for 14 months. To have this 5+ week reprieve has just been amazing for us. He is a totally different kid.

 

Anyway, he was treated with his constitutional remedy, ignatia, which covers most of his pandas symptoms (emotional lability, OCD, anxiety, even tics). BTW, ignatia has been very useful for one of my friend's 2 pandas boys, as well. She did not see a homeopath, she just gave it a try one day.

 

My younger son's remedy (the one who has had pandas for the past 5 weeks) was not cutting it so we did several other remedies but none of them so far have "stuck". This is a big possibility that I did not stick it out long enough with a few of them, at times I was desperate to resolve things so I jumped around alot. I am hoping that his constitutional remedy will help in the future to prevent strep infections to begin with (he had an infection when we started it).

 

It seems like when a kid gets the correct remedy prescribed to him, he is better able to not get strep to begin with. Then if he does get strep, then you dose the constitutional remedy frequently until he is better. If that doesn't work then the homeopath "takes the case" and prescribes another remedy that fits the pandas profile of symptoms better. If THAT doesn't work then you go to the strep nosode. That seems to be the general pattern from staying in touch with many pandas moms who are seeing the same practitioner.

 

I am not sure that it matters who the homeopath is, although i am more comfortable with one who has experience with pandas so they understand the urgency and they also have had experimented with several acute remedies with other kids.

 

The unusual thing about my kids is that one of them has had a more complete and immediate resolution of symptoms than is normal (and he had many diagnoses, including being close to or on the autistic spectrum), and the other one is taking much longer to resolve a pandas episode than is normal.

 

Hope that helped.

Edited by Stephanie2
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That is great about the rages going away in your son! That has been the biggest plus so far for my 6yo as well. He has had rages (hours long, as well, despite medication) for 14 months. To have this 5+ week reprieve has just been amazing for us. He is a totally different kid.

 

Anyway, he was treated with his constitutional remedy, ignatia, which covers most of his pandas symptoms (emotional lability, OCD, anxiety, even tics). BTW, ignatia has been very useful for one of my friend's 2 pandas boys, as well. She did not see a homeopath, she just gave it a try one day.

 

My younger son's remedy (the one who has had pandas for the past 5 weeks) was not cutting it so we did several other remedies but none of them so far have "stuck". This is a big possibility that I did not stick it out long enough with a few of them, at times I was desperate to resolve things so I jumped around alot. I am hoping that his constitutional remedy will help in the future to prevent strep infections to begin with (he had an infection when we started it).

 

It seems like when a kid gets the correct remedy prescribed to him, he is better able to not get strep to begin with. Then if he does get strep, then you dose the constitutional remedy frequently until he is better. If that doesn't work then the homeopath "takes the case" and prescribes another remedy that fits the pandas profile of symptoms better. If THAT doesn't work then you go to the strep nosode. That seems to be the general pattern from staying in touch with many pandas moms who are seeing the same practitioner.

 

I am not sure that it matters who the homeopath is, although i am more comfortable with one who has experience with pandas so they understand the urgency and they also have had experimented with several acute remedies with other kids.

 

The unusual thing about my kids is that one of them has had a more complete and immediate resolution of symptoms than is normal (and he had many diagnoses, including being close to or on the autistic spectrum), and the other one is taking much longer to resolve a pandas episode than is normal.

 

Hope that helped.

 

That's perfect Stephanie thanks. I've noticed there is a Homeopathic group in Texas that has experience treating PANDAS children. Is that who is treating your son? I too would feel more comfortable going to a homeopath who is familiar with PANDAS. The only issue I have is the fear of taking him off his current antibiotics that are sort of working, to try something new. I'd hate to see him slip back to the point he was at last fall. I'm also enjoying the sanity break I am currently experiencing. ;-) Having said that though, I still want to continue to educate myself about ALL of our treatment options.

 

Thanks again!

Vicky

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That is great about the rages going away in your son! That has been the biggest plus so far for my 6yo as well. He has had rages (hours long, as well, despite medication) for 14 months. To have this 5+ week reprieve has just been amazing for us. He is a totally different kid.

 

Anyway, he was treated with his constitutional remedy, ignatia, which covers most of his pandas symptoms (emotional lability, OCD, anxiety, even tics). BTW, ignatia has been very useful for one of my friend's 2 pandas boys, as well. She did not see a homeopath, she just gave it a try one day.

 

My younger son's remedy (the one who has had pandas for the past 5 weeks) was not cutting it so we did several other remedies but none of them so far have "stuck". This is a big possibility that I did not stick it out long enough with a few of them, at times I was desperate to resolve things so I jumped around alot. I am hoping that his constitutional remedy will help in the future to prevent strep infections to begin with (he had an infection when we started it).

 

It seems like when a kid gets the correct remedy prescribed to him, he is better able to not get strep to begin with. Then if he does get strep, then you dose the constitutional remedy frequently until he is better. If that doesn't work then the homeopath "takes the case" and prescribes another remedy that fits the pandas profile of symptoms better. If THAT doesn't work then you go to the strep nosode. That seems to be the general pattern from staying in touch with many pandas moms who are seeing the same practitioner.

 

I am not sure that it matters who the homeopath is, although i am more comfortable with one who has experience with pandas so they understand the urgency and they also have had experimented with several acute remedies with other kids.

 

The unusual thing about my kids is that one of them has had a more complete and immediate resolution of symptoms than is normal (and he had many diagnoses, including being close to or on the autistic spectrum), and the other one is taking much longer to resolve a pandas episode than is normal.

 

Hope that helped.

 

That's perfect Stephanie thanks. I've noticed there is a Homeopathic group in Texas that has experience treating PANDAS children. Is that who is treating your son? I too would feel more comfortable going to a homeopath who is familiar with PANDAS. The only issue I have is the fear of taking him off his current antibiotics that are sort of working, to try something new. I'd hate to see him slip back to the point he was at last fall. I'm also enjoying the sanity break I am currently experiencing. ;-) Having said that though, I still want to continue to educate myself about ALL of our treatment options.

 

Thanks again!

Vicky

 

I think the group you are referring to in Texas is Homeopathy Center of Houston (or something like that, I have a link on my blog). I decided not to go with them b/c it costs about $500-1000 per month. Also, they are not classical homeopaths. The do sequential homeopathy. I went with Pierre's group b/c they do classical homeopathy which is easier, cheaper (much) and is supposed to heal more deeply. I have no regrets for my 6yo, but if I don't see more progress with my 3yo soon, I may switch him and one of the options will be Houston Homeopathy Center. Either way, he is still responding to DAN but quite frankly it is expensive and exhausting and I would like to cut back on DAN and go full-force homeopathy.

 

I don't blame you for not wanting to rock the boat. You can still start a remedy even if he is on antibiotics, though.

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Stephanie,

 

How severe were your son't tics and how long did it take for them to go away with this treatment. It is the only thing that my dd really has issues with now. They were gone for about 6 months after having her tonsils out but this spring I think allergies have caused inflammation and her tics are getting out of control again. Where would you get ignatia? Do you have to find a Dr. or can you find it online?

 

Melanie

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Stephanie,

 

How severe were your son't tics and how long did it take for them to go away with this treatment. It is the only thing that my dd really has issues with now. They were gone for about 6 months after having her tonsils out but this spring I think allergies have caused inflammation and her tics are getting out of control again. Where would you get ignatia? Do you have to find a Dr. or can you find it online?

 

Melanie

 

My 6yo was more of a classic pandas kid (all symptoms) but he did suffer from tics, which at times were absolutely debilitating for our whole house b/c he directed them at family members (I think it bordered on "tourettic OCD")...poking, pushing, etc. BUT we got the most severe of those under control with one infusion of IVIG. All that was left when we started homeopathy was a cough/throat-clearing tic. I would say I noticed a dramatic reduction immediately, however, we have had strep in the house for 5 weeks so every once in a while I hear a throat-clearing noise but it is barely audible, probably would not even pass as a tic, but I know it is a "remnant". I certainly can't say what homeopathy would do for tics. I do have a friend who is just now starting homeopathy for her son's tics, so if you check back with me in a month or so I can tell you what the response has been.

 

You could actually get Ignatia Amara 30c at Whole Foods and probably any healthfood store that carries homeopathic products. BUT ignatia was prescribed to us based on the emotional lability, OCD, anxiety aspect of his pandas. It DOES have an indication for tics, but I don't know that it would work for a child who doesn't have all the "drama" with it. There are many remedies out there for specifically tics, but I don't know much about that.

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Thanks Stephanie. I will check back with you. I actually went to my first homeschool meeting last night and they had a homeopath there talking about natural approaches to keeping our kids healthy. Talk about being in the right place at the right time. God certainly puts people in your life when you are really looking.

 

I hope that things just continue to get better for your boys:)

 

Melanie

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For example, there is Tic Tamer, from Native Remedies, a homeopathic for tics. This is not the classical homeopathy, but a remedy for that symptom. The classical homeopaths generally seem to not like that approach to homeopathy. I'm not giving an opinion on it one way or the other, but this is one I ran across and tried a couple years ago. It didn't do much for me, but I had a lot of other circumstances, so wouldn't read much into that.

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  • 1 month later...

I have used homeopaths for years for myself and for my dd9 for other issues. My dd9 was recently diagnosed PITANDS. Anyway I called my homeopath in CA and he overnighted me Agaricus 200c (you can't find it in Whole Foods), and it was very helpful with the ticking, not the emotional stuff. However, since this is our first experience with PITANDS; and my dd was suffering so greatly (although I'm told her "sick" feeling is not typical for PITANDS) I broke down against his wishes and got her the IVIG. He will be disappointed; and now she is suffering from the headaches, fever, and nausea side effects:( But I do firmly believe in homeopathy as it has worked some miracles in mine and my dd's life. But you have to be patient.

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