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Hi,

 

I have a couple of issues for which I would love some input/advice.

 

Firstly - my son - almost 10 - was diagnosed with PANDAS almost two years ago and we have had a long battle with it. Over the last few days - his identical twin brother - who has never had any symptoms at all - has started sniffing his hands constantly - I have noticed it proabably three of four times an hour. He says he doesn't know why he's doing it - and he cant seem to control it. The son with PANDAS hasnt had much of a problem with tics - mostly OCD/Anxiety and Concentration/Attention issues - although there have been some vocal outbursts at times. Could this just be a one off or should I be racing off to the doctor for abx?? I'm so worried for him - he has watched his brother battle this thing - I cant stand to think that they both may have it...

 

Secondly - I feel like we are taking one step forward and two back with my son who has been diagnosed. Our paediatrician - who initially was fantastic - if only for the fact that he diagnosed the PANDAS!! He did send us to a paediatric neurologist - who told us that IVIG would be of no use as it mostly assisted with kids whose primary symptoms are tics and would not likely help the OCD. HAs anyone heard that this is the case... His suggested treatment was abx (we use augmentin - no one will let us try the azithromycin - "its expensive and the Augmentin does the same job") for symptoms of sore throat etc - the most I can get docs to prescribe is for two weeks. And steroids (prednisone) for 5 days.

 

I have been consulting with a pharmacist who is also a homeopath and we have developed a regime of the following in an effort to reduce inflammation and repair/care for the immune system etc.

 

Omega 3, 6, 9 (1500mg fish oil/1000mg flaxseed oil)

Multi containing B vitamins zinc etc

Vitamin D

Astragalus 8

Lysine (just because of its antiviral properties - to try to fight off viruses)

Olive leaf extract - 5 mls daily

St Johns Wort

A supplement called Ultra Bioplex - which contains Cows colostrum - which I have read can have a similar effect as the IVIG on the immune system.

Probiotic powder (does not contain strep strain)

 

If we are religious with this stuff it can reduce symptoms by up to 60-70%. However is he has a flare up we are still going back to square one each time - and we are seeing him fall further behind at school and becoming more and more disconnected from his friends.

 

I have been looking into Inositol, 5HTP and GABA and am wondering if anyone has had any success or otherwise with any of these and if so how have they been used/dosages etc.

 

I would also like to try long term abx but I am having real trouble convincing our Docs to agree. They all say that as PANDAS isnt caused by the bacteria then antibiotics cant be of help once the infection has cleared. And of course if they think its viral then they dont want to prescribe abx at all.

 

What I need are some links the recent and credible studies that show that the long term abx are beneficial. I also wonder if there is anything out there about the benefit of IVIG for OCD etc.

 

Also - they dont want to re-check ASO and AntiDnase levels as they say once they are elevated in can take a couple of years to go down and any subsequent results/levels mean nothing. Should I be insisting on these being rechecked?? (they were checked once about 12 months after intitial diagnosis and had come down but were still very high compared to the norm)

 

I know this is a lot... maybe I should have posted different topics for each of my questions?? Not a frequent user of forums so not sure of the correct procedure...

 

Also - I am in Australia - and am keen to hear from anyone else from Australia on this forum!

 

Thanks,

 

Kellie

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Hi,

 

I have a couple of issues for which I would love some input/advice.

 

Firstly - my son - almost 10 - was diagnosed with PANDAS almost two years ago and we have had a long battle with it. Over the last few days - his identical twin brother - who has never had any symptoms at all - has started sniffing his hands constantly - I have noticed it proabably three of four times an hour. He says he doesn't know why he's doing it - and he cant seem to control it. The son with PANDAS hasnt had much of a problem with tics - mostly OCD/Anxiety and Concentration/Attention issues - although there have been some vocal outbursts at times. Could this just be a one off or should I be racing off to the doctor for abx?? I'm so worried for him - he has watched his brother battle this thing - I cant stand to think that they both may have it...

 

Secondly - I feel like we are taking one step forward and two back with my son who has been diagnosed. Our paediatrician - who initially was fantastic - if only for the fact that he diagnosed the PANDAS!! He did send us to a paediatric neurologist - who told us that IVIG would be of no use as it mostly assisted with kids whose primary symptoms are tics and would not likely help the OCD. HAs anyone heard that this is the case... His suggested treatment was abx (we use augmentin - no one will let us try the azithromycin - "its expensive and the Augmentin does the same job") for symptoms of sore throat etc - the most I can get docs to prescribe is for two weeks. And steroids (prednisone) for 5 days.

 

I have been consulting with a pharmacist who is also a homeopath and we have developed a regime of the following in an effort to reduce inflammation and repair/care for the immune system etc.

 

Omega 3, 6, 9 (1500mg fish oil/1000mg flaxseed oil)

Multi containing B vitamins zinc etc

Vitamin D

Astragalus 8

Lysine (just because of its antiviral properties - to try to fight off viruses)

Olive leaf extract - 5 mls daily

St Johns Wort

A supplement called Ultra Bioplex - which contains Cows colostrum - which I have read can have a similar effect as the IVIG on the immune system.

Probiotic powder (does not contain strep strain)

 

If we are religious with this stuff it can reduce symptoms by up to 60-70%. However is he has a flare up we are still going back to square one each time - and we are seeing him fall further behind at school and becoming more and more disconnected from his friends.

 

I have been looking into Inositol, 5HTP and GABA and am wondering if anyone has had any success or otherwise with any of these and if so how have they been used/dosages etc.

 

I would also like to try long term abx but I am having real trouble convincing our Docs to agree. They all say that as PANDAS isnt caused by the bacteria then antibiotics cant be of help once the infection has cleared. And of course if they think its viral then they dont want to prescribe abx at all.

 

What I need are some links the recent and credible studies that show that the long term abx are beneficial. I also wonder if there is anything out there about the benefit of IVIG for OCD etc.

 

Also - they dont want to re-check ASO and AntiDnase levels as they say once they are elevated in can take a couple of years to go down and any subsequent results/levels mean nothing. Should I be insisting on these being rechecked?? (they were checked once about 12 months after intitial diagnosis and had come down but were still very high compared to the norm)

 

I know this is a lot... maybe I should have posted different topics for each of my questions?? Not a frequent user of forums so not sure of the correct procedure...

 

Also - I am in Australia - and am keen to hear from anyone else from Australia on this forum!

 

Thanks,

 

Kellie

My daughter is scheduled for lVlG ,recommended by both Dr.T and Dr. k. No tics ONLY OCD here. Dr. Murphy in Florida is doing a trial with Azithromycin and Dr. Geller will be starting a trial with Dr. Jenike in Mass. soon. Perhaps your Dr. cold reach out to one of them? Dr. Geller is also Australian :)

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Hi,

 

I have a couple of issues for which I would love some input/advice.

 

Firstly - my son - almost 10 - was diagnosed with PANDAS almost two years ago and we have had a long battle with it. Over the last few days - his identical twin brother - who has never had any symptoms at all - has started sniffing his hands constantly - I have noticed it proabably three of four times an hour. He says he doesn't know why he's doing it - and he cant seem to control it. The son with PANDAS hasnt had much of a problem with tics - mostly OCD/Anxiety and Concentration/Attention issues - although there have been some vocal outbursts at times. Could this just be a one off or should I be racing off to the doctor for abx?? I'm so worried for him - he has watched his brother battle this thing - I cant stand to think that they both may have it...

 

Secondly - I feel like we are taking one step forward and two back with my son who has been diagnosed. Our paediatrician - who initially was fantastic - if only for the fact that he diagnosed the PANDAS!! He did send us to a paediatric neurologist - who told us that IVIG would be of no use as it mostly assisted with kids whose primary symptoms are tics and would not likely help the OCD. HAs anyone heard that this is the case... His suggested treatment was abx (we use augmentin - no one will let us try the azithromycin - "its expensive and the Augmentin does the same job") for symptoms of sore throat etc - the most I can get docs to prescribe is for two weeks. And steroids (prednisone) for 5 days.

 

I have been consulting with a pharmacist who is also a homeopath and we have developed a regime of the following in an effort to reduce inflammation and repair/care for the immune system etc.

 

Omega 3, 6, 9 (1500mg fish oil/1000mg flaxseed oil)

Multi containing B vitamins zinc etc

Vitamin D

Astragalus 8

Lysine (just because of its antiviral properties - to try to fight off viruses)

Olive leaf extract - 5 mls daily

St Johns Wort

A supplement called Ultra Bioplex - which contains Cows colostrum - which I have read can have a similar effect as the IVIG on the immune system.

Probiotic powder (does not contain strep strain)

 

If we are religious with this stuff it can reduce symptoms by up to 60-70%. However is he has a flare up we are still going back to square one each time - and we are seeing him fall further behind at school and becoming more and more disconnected from his friends.

 

I have been looking into Inositol, 5HTP and GABA and am wondering if anyone has had any success or otherwise with any of these and if so how have they been used/dosages etc.

 

I would also like to try long term abx but I am having real trouble convincing our Docs to agree. They all say that as PANDAS isnt caused by the bacteria then antibiotics cant be of help once the infection has cleared. And of course if they think its viral then they dont want to prescribe abx at all.

 

What I need are some links the recent and credible studies that show that the long term abx are beneficial. I also wonder if there is anything out there about the benefit of IVIG for OCD etc.

 

Also - they dont want to re-check ASO and AntiDnase levels as they say once they are elevated in can take a couple of years to go down and any subsequent results/levels mean nothing. Should I be insisting on these being rechecked?? (they were checked once about 12 months after intitial diagnosis and had come down but were still very high compared to the norm)

 

I know this is a lot... maybe I should have posted different topics for each of my questions?? Not a frequent user of forums so not sure of the correct procedure...

 

Also - I am in Australia - and am keen to hear from anyone else from Australia on this forum!

 

Thanks,

 

Kellie

My daughter is scheduled for lVlG ,recommended by both Dr.T and Dr. k. No tics ONLY OCD here. Dr. Murphy in Florida is doing a trial with Azithromycin and Dr. Geller will be starting a trial with Dr. Jenike in Mass. soon. Perhaps your Dr. cold reach out to one of them? Dr. Geller is also Australian :)

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I'm sorry you're in the situation. It sounds like one of your major problems is a lack of medical support, which makes everything 5 times harder. I do think you should have your second son checked. My DS finger-sniffed during episodes and if he doesn't know why he's doing it - he just has to - sounds like a compulsion. If he isn't already on a regimen like your first son, I'd start getting him to take the same things to try to reduce inflammation.

 

IVIG absolutely helps OCD symptoms. Your doctors are mistaken. The NIMH study is specifically focused on its benefits for OCD. I know others are more closely involved, so hopefully they'll be able to give you some research papers. No doctor is going to listen to a bunch of anecdotes from a US forum. You may want to start a second topic specifically asking for recent research papers, not just on IVIG but on the immune modulating effects of abx. This is now an emerging theory as to why our kids may need long term abx - not simply to fight infection but also to modulate their immune systems/inflammatory response. You can also google ALS (Lou Gehrig's Disease) + antibiotics, as this is also being researched in ALS. New thinking is that abx do more than just fight infection.

 

As for your supplements...you may want to see if you can test for pyroluria - a genetic inability to make efficient use of the zinc and B6 in your body. If your sons have it, it could be contributing to the inability to shake an infection and higher than normal doses of zinc/P5P (specific form of B6) and choline might help. Also, if you have pyroluria, you generally only use Omega 6 and not Omega 3s, as they compete for the same binding sites and pyroluriacs respond best to Omega 6s.

 

Lysine is a great anti-viral. But it is also a seratonin-agonist and can cause anxiety (and I'm guessing could also contribute to OCD). It could be wiping out the benefits of the St John's Wart. You may want to talk to your homeopath about eliminating this one for daily use and only using it if a cold crops up. It is effective against certain families of viruses but not all. So as a prophylactic, given your son's anxiety/OCD tendencies, I'd reconsider this one for daily use.

 

If you're considering adding inositol, GABA or 5HTP, do some research on using it with St John's. You don't want to be using too many things that effect seratonin at the same time. I posted a bunch of links to inositol articles a few weeks ago. But I don't think it's something you should combine with other anti-anxiety supplements.

 

You may also want to look into supplements for oxidative stress - resveratrol, alpha lipoic acid, CoQ10, others?. Plus using ibuprofen as part of a regular anti-inflammatory regimen.

 

As for ASO/antiDNase levels dropping - my understanding is that no one knows how fast they drop. So sounds like a smokescreen to me. I "think" ASO drops fairly quickly, at least compared to AntiDNase. But I certainly think checking them every 3-6 months is a valid tracking tool. It will show you drops and spikes and give you some evidence that something could be going on. You can also ask about measuring C3d immune complexes, which show whether the immune complex system is overly activated (presumably fighting an infection).

 

You may also want to look for Ozimum - she's in Australia and comes to this forum periodically. You can do a member search and send her a private message.

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Hi KelC - so sorry you need to be here again!

I don't think Augmentin is a macrolide, where erythromycine (zithro/azith) is. Our dr insists erythromycine is a better choice of antibiotic for DS and it took a bit to convince our GP, but he's now on board.

I've just looked up the practitioners list on the MINDD Foundation website and there are a couple of health practitioners in TAS who did the MINDD training in 2011 - they might be worth checking out. (I gotta say my DS is doing really well with a dr here in Melbourne who has done that training.)

Otherwise, it might be worth seeing if your dr would consult with Dr Robyn Cosford in Sydney - within Biomed circles she's considered the PANDAS expert in Australia - I know she's booked out for months though.

Happy to talk...do you still have my number? Hugs to you.

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Thankyou to everyone for your advice... I will take it all on board.... Ozimum - I have been in touch with Robyn Cosford and a DAN doctor and all feedback leads to diet etc. have already done the wheat free, sugar free etc etc. I just believe that the key to beating this thing is so much more than a change of diet. Just got to figure out what that is.

And yes... more helpful doctors would be great. The trouble seems to be that because PANDAS is so little known here, they dont really have much info and dont seem prepared to take the time to do the research.. Its much easier to try to prescribe an SSRI....

Sometimes it seems so hard to be objective...about anything! How he is travelling, how effective medications are etc etc. Just spent the last 5 hours researching treatments, and still so confused. Now have lost a day and its time to go and pick up kids from school and hope all the way there that they are both okay when they hop in the car. So tired of worrying..... I guess its important to remember that there are far worse illnesses we could be fighting....just doesnt feel like it right now!! Thanks again for taking the time to reply :)

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Hi KelC,

This thing is so-o-o frustrating trying to figure out.

For us, diet was a part of the puzzle because DS had food sensitivities and gut issues (we had no idea!) A stool test revealed overgrowths of strep and the Mutaflor protocol has worked for us. The GF/CF/etc diet was helpful because it eliminated inflammatory foods and allowed his gut to heal. The diet did not provide any Wow! moments, just slow and steady progress over the last 17 months; though DS did realise he could concentrate better. In addition we rectified Vit and mineral deficiencies (eg zinc), and added in enzymes and probiotics.

On top of that we hit every infection hard and fast with an antibiotic as soon as PANDAS symptoms begin to ramp up. (I now always have a script on hand ready to go - it helps to have drs who get it!) So we've been managing it. He just got through a heavy cold without developing PANDAS symptoms - I don't remember the last time that happened! So I'm holding my breath but it is fair to say DS hasn't been this healthy in a long time, and so much happier in himself. I'll take that!

The MINDD and Biobalance trained practitioners do know about PANDAS and Biofilms. They are trained by exceptional DAN! drs mostly from the USA. But like everything, there are good ones and not so good...

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Hi Eljomom,

My ds8 presented with almost constant vocal and motor tics. The ivig has helped tremendously! Now he only has very slight almost imperceptible tics after an illness, which doesn't usually start until 2-4 weeks AFTER the illness is over. Otherwise he is tic free. I do think his being young helped IMO.

Best of luck:)

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@minimaxwell---what trial is Gellar and Jenike starting? Do you know?

Also, I have heard the opposite...that IVIG doesn't work as well for tics.

Study not up and running yet. It will be abx azithromycin. I think it is the same as Dr. Murphys in Tampa,

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patric---how long had your ds had the tics?

was he debilitated? who did IVIG?

 

Hi Eljomom,

My ds8 presented with almost constant vocal and motor tics. The ivig has helped tremendously! Now he only has very slight almost imperceptible tics after an illness, which doesn't usually start until 2-4 weeks AFTER the illness is over. Otherwise he is tic free. I do think his being young helped IMO.

Best of luck:)

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Hi Eljomom,

 

My ds8 started with blinking tics at around age six. We didn't think much of it. At age 7 after a strep infection, he developed motor tics, very exaggerated body movements. At this point we didn't know he had pandas. He was mis diagnosed with tourettes. About a month after the motor tics, the vocal tics and very loud grunts started. A ped neurologist finally diagnoses pandas, but wanted to still treat him as if he had Tourette's with tic meds.

 

We took him to dr K. After reading up on him, and it was the best decision for us. He treated with steroid burst then IVIg following. I wouldn't say it was cleared overnight, but certainly within several weeks, with each day better and better until he was completely tic free! My family think it is like a miracle. He did get sick and have a couple of flair ups, but we treated each and the symptoms cleared up and the tics never did become that evident with the flair ups, it was rage etc.

 

I wouldn't say the ivig was a cure, but has definitely improved his quality of life by about 90 percent. He didnt have lyme or other co-inf. Now He is happy, well adjusted, attends school, and leads a normal eight year old life. This is not something we could have said a year ago. You asked about the tics which I have elaborated on, but he also saw great improvement with separation anxiety ( wouldn't leave the room we were in, and if we did he would throw a huge tantrum unless we told him what room we would be in, how long etc) and improvement with emotional lability. His NE however did not improve but I will take that any day over the other. We are so grateful for finding the right path and dr. I know that others may not have had the same results, but this has worked for us. Does your child present mostly with tics as mine did? Can I ask what has or hasn't worked for you?

Best of luck and feel free to ask any other questions. I have received so much warm and wonderful advice on this forum, and am happy to share what worked for us as others have done for me.

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