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DD just turned 10.

Started Zoloft 12.5 for 7 days then increased to 25 for last 12 days.

For 1 week now her ANXIETY and PANIC and OCD fear of dying is nonstop, unrelenting, causing her to curl up in a ball and cry, whether at home or out in public!!

It can last for hours and hours and hours...(you know)

 

SO is this what can happen to kids on SSRI's???

 

I've read that our kids can not tolerate SSRIs -- is this why??

Dr T also said to watch for hyperness, mania and increased anxiety...

Just when I think she can't possibly have any more INCREASED anxiety....

I will call her Psych on Monday, until then I will hold her doses (I guess???)

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DD just turned 10.

Started Zoloft 12.5 for 7 days then increased to 25 for last 12 days.

For 1 week now her ANXIETY and PANIC and OCD fear of dying is nonstop, unrelenting, causing her to curl up in a ball and cry, whether at home or out in public!!

It can last for hours and hours and hours...(you know)

 

SO is this what can happen to kids on SSRI's???

 

I've read that our kids can not tolerate SSRIs -- is this why??

Dr T also said to watch for hyperness, mania and increased anxiety...

Just when I think she can't possibly have any more INCREASED anxiety....

I will call her Psych on Monday, until then I will hold her doses (I guess???)

 

Cut her dose and start tapering off. YES this is what happens to our kids on SSRI's. Luckily Dr. T is your doctor and advised you ahead. He is a genius and an angel. I just spoke to him about Cholestyramine and how it helped my daughter who can not take SSRI's. BE SURE TO TAKE Vitamin D with it. 5000 iu. We started at 1/4 scoop twice a day with good improvement. we went to 1/4 4 times a day with much less tics, OCD... It pulls out the toxins. Really helped. It's a powder and you mix it with juice. Also have you had her Vitamin D and B12 levels taken? They can really contribute to this.As a parent who tried them all, I would loose the psychiatrist as they will repeatedly put your child on one after the other only to have this roller coaster happen again and again. Vitamin D and B12 do so much more. Some have luck with SAMe too. we didn't but some do....Good luck.

 

Nancy

Edited by fcefxer
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Thank you for your quik reply...

I just want her to get some relief!!!

This journey is bringing me to tears lately...

I was hesitant to go to another psychiatrist....

We went to one right after I realized PANDAS/PANS diagnosis and she prescribed Abilify for vocal tics --- we never gave..

Got IVIg in Feb with Dr K...

LOTS of her symptoms improved/disappeared quickly...except her OCD.

Actually, her Tics and nonstop complicated all-day-long compulsions stopped BUT NOW she is OBSESSING all day long that she is going to die:(:(

I was just hoping Zoloft would decrease her anxiety and make her better able to fight the "bully in her brain" as we call the intrusive thoughts...

No luck --- just made it worse it seems

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yes yes yes! this is what our activation looked like. my daughter , age 10 at the time, then started biting, and crying to "go home to heaven". this was just too much. her docs even raised her dose after this!

I would taper.down tonight and not wait until monday. maybe give half pill tonight if you can ( or on the morning)

I am so sorry she is suffering.

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I just spoke to him about Cholestyramine and how it helped my daughter who can not take SSRI's.

 

Nancy!! can you tell me more about this? I searched wikipedia http://en.wikipedia.org/wiki/Cholestyramine and found this is used to lower cholesterol.

 

Is this considered a Statin?

 

The reason I'm asking is that my PANDAS dd has VERY high cholesterol, total is 271 (with high very high LDL 202). The endocrinilogist wants to put her on statins.

 

Of course, probably won't do the statins (due to side effects, unknown long term use, controversy) ... unless (since I read they are also anti-inflammatory) they might also help her PANDAS.

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I just spoke to him about Cholestyramine and how it helped my daughter who can not take SSRI's.

 

Nancy!! can you tell me more about this? I searched wikipedia http://en.wikipedia.org/wiki/Cholestyramine and found this is used to lower cholesterol.

 

Is this considered a Statin?

 

The reason I'm asking is that my PANDAS dd has VERY high cholesterol, total is 271 (with high very high LDL 202). The endocrinilogist wants to put her on statins.

 

Of course, probably won't do the statins (due to side effects, unknown long term use, controversy) ... unless (since I read they are also anti-inflammatory) they might also help her PANDAS.

 

okay, I see it considered a "statin alternative" but doesn't really lower LDL (my dd's problem) http://www.livestrong.com/article/146893-alternatives-to-statins-for-cholesterol/

 

why is your dd on it?

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DD just turned 10.

Started Zoloft 12.5 for 7 days then increased to 25 for last 12 days.

For 1 week now her ANXIETY and PANIC and OCD fear of dying is nonstop, unrelenting, causing her to curl up in a ball and cry, whether at home or out in public!!

It can last for hours and hours and hours...(you know)

 

SO is this what can happen to kids on SSRI's???

 

I've read that our kids can not tolerate SSRIs -- is this why??

Dr T also said to watch for hyperness, mania and increased anxiety...

Just when I think she can't possibly have any more INCREASED anxiety....

I will call her Psych on Monday, until then I will hold her doses (I guess???)

 

Kiddos doc wanted to increase her Zoloft after 10 days, and I reminded them that it does not reach peak effectiveness for 6 weeks, so I was going to wait until then to see where we were at that point. The higher the dose, the more likelihood of the side effects. She is doing pretty well on just the 12.5mg.

 

Why so many docs want to increase the dosage prior to seeing if a low dosage will work is beyond me. When I questioned kiddos doc, they said since it takes so long to reach peak, they increase it so parents feel like the doc and they are doing "something" to try to help until the meds can actually kick in rather than feeling "helpless." I have no idea why other docs do this.

 

Sadly, most meds can create an exacerbation of symptoms they are trying to treat as a side effect.

 

Zoloft side effects (just a few):

 

"agitation, hallucinations, fever, overactive reflexes, tremors;"

 

"sleep problems (insomnia); or"

 

http://www.drugs.com/zoloft.html

Edited by Mayzoo
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I just spoke to him about Cholestyramine and how it helped my daughter who can not take SSRI's.

 

Nancy!! can you tell me more about this? I searched wikipedia http://en.wikipedia.org/wiki/Cholestyramine and found this is used to lower cholesterol.

 

Is this considered a Statin?

 

The reason I'm asking is that my PANDAS dd has VERY high cholesterol, total is 271 (with high very high LDL 202). The endocrinilogist wants to put her on statins.

 

Of course, probably won't do the statins (due to side effects, unknown long term use, controversy) ... unless (since I read they are also anti-inflammatory) they might also help her PANDAS.

 

okay, I see it considered a "statin alternative" but doesn't really lower LDL (my dd's problem) http://www.livestrong.com/article/146893-alternatives-to-statins-for-cholesterol/

 

why is your dd on it?

Actually it was meant as a cholesterol drug but does only a so- so job at it.

Our DAN says that many of our kids can't get better because they have a malfunctioning gene which does not let them rid their bodies of mold toxicity from mold exposure. He said often it fixes depression. He sited this site http://www.survivingmold.com/news/2011/07/will-surviving-mold-mean-surviving-lyme-publichealthalert-org/ Under the diagnosis page there is a test you can take measuring the ability to see shading. If you fail, you have toxicity in your body from mold or Lyme or C-diff. We started at a low dose (1/4 scoop twice a day) In a few days her tics decreased as did her OCD. We later found it had other uses. One interesting thing was it got rid of her band 41 on a Western Blot. My daughters big vocal tic started after lots of antibiotics and as of today every antibiotic made her worse. She was having stomach pain and could not eat. I later found this after Fixit suggested Vancomycin for vocal tics. http://www.globalrph.com/cholestyramine.htm Cholestyramine greatly helps C-difficile. I Googled lots of C-diff groups and SO MANY members had horrible OCD. Cholestyramine removes the toxins from c-diff. We expect THAT is our PANDAS infection. We start Vancomycin Monday hopefully as we are having to compounded at a compounding pharmacy to reduce the cost. Pray for us. It has been a horrible Summer. Also be sure to take vitamin D four hours before or after a dose as it lowers it dramatically.

 

Nancy

Edited by fcefxer
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we started zoloft when pandas first hit and it was bad....my daughter got A LOT worst after starting the zoloft....(sounds a lot like your daughter)....all doctors said to increase the zoloft.....i stayed the same dose (20mg)....then she finally got back after about 3 weeks to just exhibiting the bad pandas that we started out with in the beginning so we stayed at that dose....finally after a few months I caved and upped the zoloft to 30 mg and again she was bad for 2 weeks then back to her new pandas normal.....after 9 months I finally started to slowly lower the zoloft and actually saw some improvements!!!! (not totally rid of ocd and anxiety) but, I am glad to have her off of it....so I would suggest to get off or even just keep it at .5 ml (seriously, when we were lowering it she actually did well at this VERY low dose).....your child will probably not be better right away, but just realize that it takes time.

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I just spoke to him about Cholestyramine and how it helped my daughter who can not take SSRI's.

 

Nancy!! can you tell me more about this? I searched wikipedia http://en.wikipedia.org/wiki/Cholestyramine and found this is used to lower cholesterol.

 

Is this considered a Statin?

 

The reason I'm asking is that my PANDAS dd has VERY high cholesterol, total is 271 (with high very high LDL 202). The endocrinilogist wants to put her on statins.

 

Of course, probably won't do the statins (due to side effects, unknown long term use, controversy) ... unless (since I read they are also anti-inflammatory) they might also help her PANDAS.

 

okay, I see it considered a "statin alternative" but doesn't really lower LDL (my dd's problem) http://www.livestrong.com/article/146893-alternatives-to-statins-for-cholesterol/

 

why is your dd on it?

Actually it was meant as a cholesterol drug but does only a so- so job at it.

Our DAN says that many of our kids can't get better because they have a malfunctioning gene which does not let them rid their bodies of mold toxicity from mold exposure. He said often it fixes depression. He sited this site http://www.survivingmold.com/news/2011/07/will-surviving-mold-mean-surviving-lyme-publichealthalert-org/ Under the diagnosis page there is a test you can take measuring the ability to see shading. If you fail, you have toxicity in your body from mold or Lyme or C-diff. We started at a low dose (1/4 scoop twice a day) In a few days her tics decreased as did her OCD. We later found it had other uses. One interesting thing was it got rid of her band 41 on a Western Blot. My daughters big vocal tic started after lots of antibiotics and as of today every antibiotic made her worse. She was having stomach pain and could not eat. I later found this after Fixit suggested Vancomycin for vocal tics. http://www.globalrph.com/cholestyramine.htm Cholestyramine greatly helps C-difficile. I Googled lots of C-diff groups and SO MANY members had horrible OCD. Cholestyramine removes the toxins from c-diff. We expect THAT is our PANDAS infection. We start Vancomycin Monday hopefully as we are having to compounded at a compounding pharmacy to reduce the cost. Pray for us. It has been a horrible Summer. Also be sure to take vitamin D four hours before or after a dose as it lowers it dramatically.

 

Nancy

 

Okay...wow...

 

Do you know it possible to have C-diff without obvious symptoms?

 

INteresting that a when you google, it looks like people are taking it for crohn's disease...wonder if it has some anti-inflammotory properties?

 

Hmmm...found this online (a Lyme site) http://www.wellsphere.com/lyme-disease-article/powerful-ways-to-reduce-inflammation-and-remove-neurotoxins-naturally/113648

 

Second, get your hands on a good toxin binder. While cholestyramine, a cholesterol-lowering drug, has been advocated by some LLMD's for treating those with impaired detoxification ability, (because it is a powerful toxin binder), it can also cause undesirable side effects, such as constipation, bloating and other digestive problems. Dr. Loyd advocates cholestepure as a good alternative to cholestyramine. Cholestepure is a natural product made from plant sterols and can be purchased at Health Balances. He also uses peach tree extract, which he claims is the best substance he has found for removing mold toxins, which are often just as much a cause of symptoms in a Lyme disease sufferer as other toxins! Treating mold and removing mold toxins, as both Loyd and Shoemaker would agree, is vital for a full recovery from Lyme disease.

 

 

 

Paradoxically, however, cholestyramine can exacerbate inflammation in Lyme disease sufferers, so if you opt to take this toxin-binder, you may also need to add an anti-inflammatory to the mix. (And this may be a good idea, anyway, since taking a toxin-binder is likely to only partially remedy the inflammation problem). Dr. Shoemaker prescribes Actos, another medication, to reduce inflammation, but Dr. Loyd notes that Actos can exacerbate symptoms in those who are underweight or have low leptin levels. A better choice, writes Loyd, would be one of the following products: UltraInflamX, Kaprex, KaprexAI, BioticsKappArrest. Those products containing the acronym, "Kapp" in their title inhibit NF-kappaB, a messenger that causes the release of inflammatory cytokines, and are safe, natural alternatives to Actos.

 

which is interesting...b/c the endocrinologist recommended a 1mo. trial of cholest-off (a plant sterol) for dd's high cholesterol. We ended up buying something similar (a plant stanol...just b/c it got better reviews, and we though the caramel chew version would be easier for dd to take at school with her lunch).

 

This is what we were supposed to try:

http://www.amazon.com/Nature-Made-Cholest-Off-Caplets-Cholest/dp/B000CD0W8U

 

This is what we are using:

http://www.amazon.com/Benecol-Smart-Chews-Caramel-120-Count/dp/B000NBQUNW/ref=sr_1_1?s=hpc&ie=UTF8&qid=1345484809&sr=1-1&keywords=benecol

 

So, I wonder if it will affect her PANDAS??

 

We started it on Friday...this morning she seemed pretty good (1st day of school).

 

How long did it take to see an improvement from the Cholestyramine?

Edited by EAMom
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I just spoke to him about Cholestyramine and how it helped my daughter who can not take SSRI's.

 

Nancy!! can you tell me more about this? I searched wikipedia http://en.wikipedia.org/wiki/Cholestyramine and found this is used to lower cholesterol.

 

Is this considered a Statin?

 

The reason I'm asking is that my PANDAS dd has VERY high cholesterol, total is 271 (with high very high LDL 202). The endocrinilogist wants to put her on statins.

 

Of course, probably won't do the statins (due to side effects, unknown long term use, controversy) ... unless (since I read they are also anti-inflammatory) they might also help her PANDAS.

 

okay, I see it considered a "statin alternative" but doesn't really lower LDL (my dd's problem) http://www.livestrong.com/article/146893-alternatives-to-statins-for-cholesterol/

 

why is your dd on it?

Actually it was meant as a cholesterol drug but does only a so- so job at it.

Our DAN says that many of our kids can't get better because they have a malfunctioning gene which does not let them rid their bodies of mold toxicity from mold exposure. He said often it fixes depression. He sited this site http://www.survivingmold.com/news/2011/07/will-surviving-mold-mean-surviving-lyme-publichealthalert-org/ Under the diagnosis page there is a test you can take measuring the ability to see shading. If you fail, you have toxicity in your body from mold or Lyme or C-diff. We started at a low dose (1/4 scoop twice a day) In a few days her tics decreased as did her OCD. We later found it had other uses. One interesting thing was it got rid of her band 41 on a Western Blot. My daughters big vocal tic started after lots of antibiotics and as of today every antibiotic made her worse. She was having stomach pain and could not eat. I later found this after Fixit suggested Vancomycin for vocal tics. http://www.globalrph.com/cholestyramine.htm Cholestyramine greatly helps C-difficile. I Googled lots of C-diff groups and SO MANY members had horrible OCD. Cholestyramine removes the toxins from c-diff. We expect THAT is our PANDAS infection. We start Vancomycin Monday hopefully as we are having to compounded at a compounding pharmacy to reduce the cost. Pray for us. It has been a horrible Summer. Also be sure to take vitamin D four hours before or after a dose as it lowers it dramatically.

 

Nancy

 

Okay...wow...

 

Do you know it possible to have C-diff without obvious symptoms?

 

INteresting that a when you google, it looks like people are taking it for crohn's disease...wonder if it has some anti-inflammotory properties?

 

Hmmm...found this online (a Lyme site) http://www.wellsphere.com/lyme-disease-article/powerful-ways-to-reduce-inflammation-and-remove-neurotoxins-naturally/113648

 

Second, get your hands on a good toxin binder. While cholestyramine, a cholesterol-lowering drug, has been advocated by some LLMD's for treating those with impaired detoxification ability, (because it is a powerful toxin binder), it can also cause undesirable side effects, such as constipation, bloating and other digestive problems. Dr. Loyd advocates cholestepure as a good alternative to cholestyramine. Cholestepure is a natural product made from plant sterols and can be purchased at Health Balances. He also uses peach tree extract, which he claims is the best substance he has found for removing mold toxins, which are often just as much a cause of symptoms in a Lyme disease sufferer as other toxins! Treating mold and removing mold toxins, as both Loyd and Shoemaker would agree, is vital for a full recovery from Lyme disease.

 

 

 

Paradoxically, however, cholestyramine can exacerbate inflammation in Lyme disease sufferers, so if you opt to take this toxin-binder, you may also need to add an anti-inflammatory to the mix. (And this may be a good idea, anyway, since taking a toxin-binder is likely to only partially remedy the inflammation problem). Dr. Shoemaker prescribes Actos, another medication, to reduce inflammation, but Dr. Loyd notes that Actos can exacerbate symptoms in those who are underweight or have low leptin levels. A better choice, writes Loyd, would be one of the following products: UltraInflamX, Kaprex, KaprexAI, BioticsKappArrest. Those products containing the acronym, "Kapp" in their title inhibit NF-kappaB, a messenger that causes the release of inflammatory cytokines, and are safe, natural alternatives to Actos.

 

which is interesting...b/c the endocrinologist recommended a 1mo. trial of cholest-off (a plant sterol) for dd's high cholesterol. We ended up buying something similar (a plant stanol...just b/c it got better reviews, and we though the caramel chew version would be easier for dd to take at school with her lunch).

 

This is what we were supposed to try:

http://www.amazon.com/Nature-Made-Cholest-Off-Caplets-Cholest/dp/B000CD0W8U

 

This is what we are using:

http://www.amazon.com/Benecol-Smart-Chews-Caramel-120-Count/dp/B000NBQUNW/ref=sr_1_1?s=hpc&ie=UTF8&qid=1345484809&sr=1-1&keywords=benecol

 

So, I wonder if it will affect her PANDAS??

 

We started it on Friday...this morning she seemed pretty good (1st day of school).

 

How long did it take to see an improvement from the Cholestyramine?

 

Maybe we should try a plant sterol next month? I found this http://www.naturesapotheke.com/AntioxidantsSterolsAndInflammation.htm :

 

ESTERS and STANOLS

You may also hear the terms “esters” and “stanols” associated with sterols. Sterol esters are products of sterols and organic acids, where the organic radical replaces the hydroxyl group.

Stanols are hydrogenated sterols, and not familiar to the body. Like hydrogenated oils, we do not know the long term effects

Sterols are probably best known for their immune modulating properties.

The body’s response to environmental toxins and radiation is a shift to the Th-2 activity, with a consequent loss in Th-1 activity. Sterols can help to modulate this response (19). This Th-1/Th-2 balance is critical in the development of allergies, eczema and a series of other autoimmune conditions (20).

Sterols are also reasonably well known for their ability to block the absorption of dietary cholesterol. It is important here to be using “free sterols”, as opposed to esters whose effectiveness declines over a couple of months (18).

Stanols which are hydrogenated sterols can also block the absorption of cholesterol. However they are not familiar to the body and we do not know their long term effects. Perhaps more importantly they also block the absorption of all sterols, including the beta-sitosterol that is essential to the body.

The advantage of sterols over statins is that while statins block cholesterol production from the liver, (and also inhibit the production of CoQ 10), the sterols inhibit the absorption of the dietary cholesterol and leave the liver to control the body’s cholesterol levels naturally (21)

Sterols can also be very helpful to older men suffering from BPH, (22). Not only is this problem a social inconvenience, frequent night time visits to the bath room can result in sleep deprivation, which in turn can have an adverse impact on the immune system, and also result in fatigue and depression.

 

STEROLS and INFLAMMATION

Some exciting research is now showing that beta-sitosterol can inhibit the production of the Il-6 that we talked about previously as being a pro-inflammatory cytokine produced by oxidative stress.(23, 24).

You may recall that epidemiological studies by the National Institute on Ageing have linked elevated levels of IL-6 with increased risk of death from cardiovascular disease (6,7).

Il-6 has also been linked with disease progression in the older population in a number of diseases, rheumatoid arthritis, multiple myeloma, osteoporosis, Alzheimer’s, CVD and mortality in general. (5, 6, 7, 8, 9, 25, 26, 27).

So Il-6 is certainly a cytokine whose production you would want to minimize.

In addition to minimizing Il-6, Sterols can also stimulate production of an anti-inflammatory cytokine Il-10.

Il-10 has been associated with inhibition of inflammation (23, 28, 29, 30), and what is perhaps particularly important, the inhibition of atherosclerotic lesions and blocking atherosclerotic events (31, 32).

Il-10 has been referred to as an “Immunologic Scalpel” for atherosclerosis, and is under investigation, and in a few cases is at the stage of clinical trials, for therapy for a variety of chronic diseases. These include rheumatoid arthritis, inflammatory bowel disease, psoriasis, and multiple sclerosis (33, 42).

Okay...I always get Th1 Th2 confused.

Do we think Th1 is overactive in PANDAS?

This article says it is overactive in autoimmune diseases (MS etc)

 

Researchers working on allergies are looking at ways to drive up the TH1 response – to rebalance the system away from leaning heavily into a TH2 response by redirecting the body into using the TH1 cytokines instead. Likewise, researchers working with diseases where the TH1 response is driving the system, are looking at using high-dose exposure to allergens to ‘kick-start’ the TH2 immune response, and rebalance the system.

 

There is evidence that autoimmune diseases such as multiple sclerosis, type 1 insulin-dependent diabetes mellitus, and posterior uveitis are Th1 mediated – and that in some cases, the diseases can be alleviated by a reduction of the Th1 response or a shift towards Th2 response. But there are exceptions, and some researchers see the Th1/Th2 concept as an integral part of the complex interactions occurring as autoimmune disease develops

 

 

Read more at Suite101: What are TH1 and Th2 Forms of Immune Response?: An Immune System Out of Balance | Suite101.com http://suite101.com/article/what-are-th1-and-th2-forms-of-immune-response-a118467#ixzz246xPKCoa

 

 

anyway...don't know if Plant sterols will shift things the right way? or maybe they just modulate things (shift depends on what system is overactive?) ??

Edited by EAMom
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