Any with predominantly tics? Also, supplements while waiting...

[eljomom]

Hello,

I've posted a few times here about my 6 year old who had a couple tics and some mild ocd, and then within a week of a 24 hour "fever" she started having more and more tics--over a dozen now, head to toe. She's never "had" strep---but I've never had her swabbed. I just have let fevers/illnesses work themselves out in her life, other than pneumonia twice. Just a reminder, my brother had Tourette's, so I am trying to weed that out, or week pandas out......as my father in law had rheumatic fever as a kid and died at 44 from his second heart attack. She definitely has the separation anxiety, not wanting to sleep alone (i have 4 kids, so her 8 year old sleeps in her bed with her), not wanting to go anywhere without me--even to play at a friends. She is ocd-ish, but not to the point of not functioning. Just stuff like having to have her hair braided before putting on her shirt, having to stretch out the armpits of her shirts, can't touch her food, shoes don't feel right, sniffing her fingers, etc... She got the hyperactivity, but has always been on that side.

That being said, I couldn't get a doc to even run her titers until over three months after this started. Still waiting on those results. Also waiting on Cunningham test. Tests were done last Thursday. I know she quite possibly could have had this going on chronically, and something tipped her over the edge end of June--maybe not even strep (PITANDS).

 

I am wondering, if there is anyone here who presented more like my daughter, with the tics being the prominent feature. She was a kid with a couple tics, and within a couple weeks, a kid with head to toe tics. It seems like the severe ocd is what most people here have going on. I would like to connect with anyone who has the tics--like tons of tics suddenly.

 

Also, I am awaiting an apt. with Dr. Latimer...not until Dec. 23, which will make it 6 months since things went south. So I am wanting to start her on some supplements....maybe....for her immune system and inflammation. I am wondering if anyone uses anything helpful?? I was talking with a woman last night who saw Latimer, and she described the steriods as something to "supress the immune system" which is what you "want to do" to get the antigens to stop misbehaving.

 

Thanks for any input.

Wendy

[keeptrying]

Hello,

I've posted a few times here about my 6 year old who had a couple tics and some mild ocd, and then within a week of a 24 hour "fever" she started having more and more tics--over a dozen now, head to toe. She's never "had" strep---but I've never had her swabbed. I just have let fevers/illnesses work themselves out in her life, other than pneumonia twice. Just a reminder, my brother had Tourette's, so I am trying to weed that out, or week pandas out......as my father in law had rheumatic fever as a kid and died at 44 from his second heart attack. She definitely has the separation anxiety, not wanting to sleep alone (i have 4 kids, so her 8 year old sleeps in her bed with her), not wanting to go anywhere without me--even to play at a friends. She is ocd-ish, but not to the point of not functioning. Just stuff like having to have her hair braided before putting on her shirt, having to stretch out the armpits of her shirts, can't touch her food, shoes don't feel right, sniffing her fingers, etc... She got the hyperactivity, but has always been on that side.

That being said, I couldn't get a doc to even run her titers until over three months after this started. Still waiting on those results. Also waiting on Cunningham test. Tests were done last Thursday. I know she quite possibly could have had this going on chronically, and something tipped her over the edge end of June--maybe not even strep (PITANDS).

 

I am wondering, if there is anyone here who presented more like my daughter, with the tics being the prominent feature. She was a kid with a couple tics, and within a couple weeks, a kid with head to toe tics. It seems like the severe ocd is what most people here have going on. I would like to connect with anyone who has the tics--like tons of tics suddenly.

 

Also, I am awaiting an apt. with Dr. Latimer...not until Dec. 23, which will make it 6 months since things went south. So I am wanting to start her on some supplements....maybe....for her immune system and inflammation. I am wondering if anyone uses anything helpful?? I was talking with a woman last night who saw Latimer, and she described the steriods as something to "supress the immune system" which is what you "want to do" to get the antigens to stop misbehaving.

 

Thanks for any input.

Wendy

[Stephanie2]

Try some Olive Leaf Extract, took care of the last of the tics for us: 500mg, 3 times a day (standardized to 20% oleuropeins).

[keeptrying]

Hello,

I've posted a few times here about my 6 year old who had a couple tics and some mild ocd, and then within a week of a 24 hour "fever" she started having more and more tics--over a dozen now, head to toe. She's never "had" strep---but I've never had her swabbed. I just have let fevers/illnesses work themselves out in her life, other than pneumonia twice. Just a reminder, my brother had Tourette's, so I am trying to weed that out, or week pandas out......as my father in law had rheumatic fever as a kid and died at 44 from his second heart attack. She definitely has the separation anxiety, not wanting to sleep alone (i have 4 kids, so her 8 year old sleeps in her bed with her), not wanting to go anywhere without me--even to play at a friends. She is ocd-ish, but not to the point of not functioning. Just stuff like having to have her hair braided before putting on her shirt, having to stretch out the armpits of her shirts, can't touch her food, shoes don't feel right, sniffing her fingers, etc... She got the hyperactivity, but has always been on that side.

That being said, I couldn't get a doc to even run her titers until over three months after this started. Still waiting on those results. Also waiting on Cunningham test. Tests were done last Thursday. I know she quite possibly could have had this going on chronically, and something tipped her over the edge end of June--maybe not even strep (PITANDS).

 

I am wondering, if there is anyone here who presented more like my daughter, with the tics being the prominent feature. She was a kid with a couple tics, and within a couple weeks, a kid with head to toe tics. It seems like the severe ocd is what most people here have going on. I would like to connect with anyone who has the tics--like tons of tics suddenly.

 

Also, I am awaiting an apt. with Dr. Latimer...not until Dec. 23, which will make it 6 months since things went south. So I am wanting to start her on some supplements....maybe....for her immune system and inflammation. I am wondering if anyone uses anything helpful?? I was talking with a woman last night who saw Latimer, and she described the steriods as something to "supress the immune system" which is what you "want to do" to get the antigens to stop misbehaving.

 

Thanks for any input.

Wendy

ooppss double post.

 

My dd9 has mostly tics. She does have some anxiety and possibly some ocd like behaviors when younger not now though. I have reached out before to tic only parents before so I understand where you are coming from. I am not sure I have much to say that will help you because I am in the same boat. We just got our cam k test back that shows my dd is in the above ave pandas range. We are waiting on some other tests too that will hopefully show us something. I have to tel you that I was and still am always looking for "something to help" in the interim. I have not found it. We have been dealing with this for 5 yrs now. We have tried so many different things and nothing has helped..yet. I have made some nice contacts and friends on this forum and they have helped me to understand it is one day at a time. Get a good doc and listen to him/her. Test for everything. I do believe if there was anything that has helped us it is changing our diet. We keep out diet clean, organic, limit sugar, avoid "bad stuff", lean proteins... My dd has never done well on supplements so I stay away from those or maybe I just have not found the right combo of them yet. We do some probiotics but usually like to get it from food source instead.

 

We have tried antibiotics with no results. We are faced with the decision to start steroids, but I am nervous about that. I understand that there is inflammation but I have heard stories of tics worsening from them. I have had a lot of support and the general thought is to just do it - so I think I will but pray like mad.

 

I am not sure if this story helps at all. I just want you to know that I am happy to share our experience along the way if you would like. MY advise is to stay the course, dont give up, even when the tics get bad (as it is for us right now) just know there is something that can be done, we just need to find it. Good Luck.

[amyjoy]

my ds14 has predominantly tics as well, which came back really hard after the steroid burst last month, and we are waiting to raise enough$$ to treat him with IVIG. In the past hardly any one thing ever helped the tics except for when we started with numerous cranial osteopathy sessions that helped immediately, and then once we found out last fall my son had severe celiac and dysbiosis and methylation problems and went completely gluten-free, that super lowered the tic baseline, but the tics still did their thing. we did steroid burst in August that really helped for a couple of weeks and then tics rebounded back pretty strong. So this is what we're doing per our pediatrician, all of them together, in the meantime that have really diminshed his tics to where he isn't so bugged at school and can mostly fall asleep at night (but everyone is different)

 

-Avipaxin by Neuroscience, specifically to reduce neuro inflammatory cytokines

-inflamawy by Natura, works through many pathways

-chinese herbal thing called Coptis Purge heat (i think the rashes almost completely also went away when we added this one a couple weeks ago)

-a liver support (methylation and glutathione inducer etc..) called Detox Antiox from designs for health.

fish oils

 

anyway its handfuls it seems, but help during this gap time. oh, did i mention not cheap either???

good luck.

[eljomom]

Stephanie--can you tell me where you get that? I don't understand the "standardized to 20% oleuropeins).

I have heard that Dr. Murphy in FL might recommend some supplements--do you see her? If so, can you share?

 

Try some Olive Leaf Extract, took care of the last of the tics for us: 500mg, 3 times a day (standardized to 20% oleuropeins).

[eljomom]

Thanks so much for sharing. So what/how did you guys (before the Cunningham) figure out it was PANDAS? and not just Tourette's??

Also, what "other tests" are you waiting for.

I am exactly where you are---I have heard steroids make tics worse, especially if it's a Tourette's case.

I would love to connect with you and compare stories.

thannks!

 

Hello,

I've posted a few times here about my 6 year old who had a couple tics and some mild ocd, and then within a week of a 24 hour "fever" she started having more and more tics--over a dozen now, head to toe. She's never "had" strep---but I've never had her swabbed. I just have let fevers/illnesses work themselves out in her life, other than pneumonia twice. Just a reminder, my brother had Tourette's, so I am trying to weed that out, or week pandas out......as my father in law had rheumatic fever as a kid and died at 44 from his second heart attack. She definitely has the separation anxiety, not wanting to sleep alone (i have 4 kids, so her 8 year old sleeps in her bed with her), not wanting to go anywhere without me--even to play at a friends. She is ocd-ish, but not to the point of not functioning. Just stuff like having to have her hair braided before putting on her shirt, having to stretch out the armpits of her shirts, can't touch her food, shoes don't feel right, sniffing her fingers, etc... She got the hyperactivity, but has always been on that side.

That being said, I couldn't get a doc to even run her titers until over three months after this started. Still waiting on those results. Also waiting on Cunningham test. Tests were done last Thursday. I know she quite possibly could have had this going on chronically, and something tipped her over the edge end of June--maybe not even strep (PITANDS).

 

I am wondering, if there is anyone here who presented more like my daughter, with the tics being the prominent feature. She was a kid with a couple tics, and within a couple weeks, a kid with head to toe tics. It seems like the severe ocd is what most people here have going on. I would like to connect with anyone who has the tics--like tons of tics suddenly.

 

Also, I am awaiting an apt. with Dr. Latimer...not until Dec. 23, which will make it 6 months since things went south. So I am wanting to start her on some supplements....maybe....for her immune system and inflammation. I am wondering if anyone uses anything helpful?? I was talking with a woman last night who saw Latimer, and she described the steriods as something to "supress the immune system" which is what you "want to do" to get the antigens to stop misbehaving.

 

Thanks for any input.

Wendy

ooppss double post.

 

My dd9 has mostly tics. She does have some anxiety and possibly some ocd like behaviors when younger not now though. I have reached out before to tic only parents before so I understand where you are coming from. I am not sure I have much to say that will help you because I am in the same boat. We just got our cam k test back that shows my dd is in the above ave pandas range. We are waiting on some other tests too that will hopefully show us something. I have to tel you that I was and still am always looking for "something to help" in the interim. I have not found it. We have been dealing with this for 5 yrs now. We have tried so many different things and nothing has helped..yet. I have made some nice contacts and friends on this forum and they have helped me to understand it is one day at a time. Get a good doc and listen to him/her. Test for everything. I do believe if there was anything that has helped us it is changing our diet. We keep out diet clean, organic, limit sugar, avoid "bad stuff", lean proteins... My dd has never done well on supplements so I stay away from those or maybe I just have not found the right combo of them yet. We do some probiotics but usually like to get it from food source instead.

 

We have tried antibiotics with no results. We are faced with the decision to start steroids, but I am nervous about that. I understand that there is inflammation but I have heard stories of tics worsening from them. I have had a lot of support and the general thought is to just do it - so I think I will but pray like mad.

 

I am not sure if this story helps at all. I just want you to know that I am happy to share our experience along the way if you would like. MY advise is to stay the course, dont give up, even when the tics get bad (as it is for us right now) just know there is something that can be done, we just need to find it. Good Luck.

[formedbrds]

I

Edited October 30, 2010 by formedbrds

[Fixit]

Hello,

I've posted a few times here about my 6 year old who had a couple tics and some mild ocd, and then within a week of a 24 hour "fever" she started having more and more tics--over a dozen now, head to toe. She's never "had" strep---but I've never had her swabbed. I just have let fevers/illnesses work themselves out in her life, other than pneumonia twice. Just a reminder, my brother had Tourette's, so I am trying to weed that out, or week pandas out......as my father in law had rheumatic fever as a kid and died at 44 from his second heart attack. She definitely has the separation anxiety, not wanting to sleep alone (i have 4 kids, so her 8 year old sleeps in her bed with her), not wanting to go anywhere without me--even to play at a friends. She is ocd-ish, but not to the point of not functioning. Just stuff like having to have her hair braided before putting on her shirt, having to stretch out the armpits of her shirts, can't touch her food, shoes don't feel right, sniffing her fingers, etc... She got the hyperactivity, but has always been on that side.

That being said, I couldn't get a doc to even run her titers until over three months after this started. Still waiting on those results. Also waiting on Cunningham test. Tests were done last Thursday. I know she quite possibly could have had this going on chronically, and something tipped her over the edge end of June--maybe not even strep (PITANDS).

 

I am wondering, if there is anyone here who presented more like my daughter, with the tics being the prominent feature. She was a kid with a couple tics, and within a couple weeks, a kid with head to toe tics. It seems like the severe ocd is what most people here have going on. I would like to connect with anyone who has the tics--like tons of tics suddenly.

 

Also, I am awaiting an apt. with Dr. Latimer...not until Dec. 23, which will make it 6 months since things went south. So I am wanting to start her on some supplements....maybe....for her immune system and inflammation. I am wondering if anyone uses anything helpful?? I was talking with a woman last night who saw Latimer, and she described the steriods as something to "supress the immune system" which is what you "want to do" to get the antigens to stop misbehaving.

 

Thanks for any input.

Wendy

 

 

i have 2 minutes and 2 cents .......

ds is 95% ticcer.....

burst was nice in that we had 4 days of subclinical stuff...and then rebouded back to prior point...

BUT THE TAPER....so nice...we got to 85-95% improved....

loast but 60% of that...

we just had a ta and reclaimed alot of that...we are back to about 75-85%.from worst point

[Stephanie2]

Stephanie--can you tell me where you get that? I don't understand the "standardized to 20% oleuropeins).

I have heard that Dr. Murphy in FL might recommend some supplements--do you see her? If so, can you share?

 

Try some Olive Leaf Extract, took care of the last of the tics for us: 500mg, 3 times a day (standardized to 20% oleuropeins).

 

 

I do not see Dr. Murphy b/c I did not want to get locked into her study meds and also we have a lot of yeast/gut bacteria issues that she does not do. We see Dr. Rossignol in Melbourne, FL (www.icdrc.org). I don't know what she recommends but here is a partial list of what our doc has recommended (my kids are on 25 supps a day each, they also have had ASD...):

 

Very high dose fish oil (DS5 is on 2000mg EPA and 500mg DHA, twice a day!! DS2 is on a little less)

Taurine (500mg, twice a day)

Magnesium Glycinate (has to be "glycinate", 200 to 400 mg per day)

Spironolactone (immune modulatory and anti-inflammatory - requires RX tho)

LDN (immune modulatory and anti-inflammotory - also requires RX)

GFCF diet

 

I added the OLE myself (oleuropeins are the "active ingredient", make sure the product specifically states that it is standardized to 20%). OLE has done wonders for strep.

 

I have to say that DS5 is a very big ticcer but he also has all the other symptoms, the tics being the hardest to get rid of. Just wanted you to know that b/c you were specifically asking about the ticcers. DS2 is more of an OCD kid, but does have tics from time to time.

[jdude]

My son, who was just diagnosed by a pediatric neurologist with PANDAS, started out w/mild OCD symptoms, then the tics started, which is what got my on the path to thinking it was PANDAS. Anyway, the tics were got better after a 20 day dose of augmentin (given by my pediatrician for a sinus infection, I begged him to extend the normal 10 day course). After a week or so off of that, the tics came back, but not terribly bad..they were fairly far between and subtle. We finally got in to see a doctor in NE Ohio that does treat PANDAS, she put him on a 10 day course of Zithromax, then a 1x per week prophylactic dose (250mg 2x one day per week). His tics have exploded in the past week and a half...he is constantly ticcing..I'm concerned it will affect his ability to concentrate in school, although so far he seems to be doing well in that regard. The doctor prescribed a medrol pack (steriod) and also chlonidine for the tics (haven't started that yet...waiting to see if the steriod burst does anything). She feels it's PANDAS v. Tourettes due to the sudden onset, plus he has had elevated ASO titers since testing in July. I appreciate you asking this question as I'm trying to figure out what the next course of action is.

[Priscilla]

Kind of like you I was initially worried about Tourettes because I have 2 cousins diagnosed with OCD and tourettes (1 has grown out of it ????) But my dd 8 had on and off tics for years, that is actually what she named them, not really motor like, and maybe could be confused with OCD. Then when she had a sudden severe decline in April 2010, she had panic attacks, severe ocd, and by the end of the week pretty severe motor tics of all extremities. I actually thought tourettes, but came across PANDAS and had to rule it out. I am sure many Dr's would have been happy to give us a tourettes diagnosis. But strep antibodies were high and tics resolved with abx. I thought they were gone, I havent' seen them for a while,and we have done IVIGx 3. I did try Olive leaf extract for a few days last week and she now has an increase in tics, ocd holding, not gone, but manageable. I am certain it is PANDAS/PITAND and not tourettes now. I also think it is suspicious my cousin grew out of pretty severe tourettes, I think he may have had PANDAS as well, but he was diagnosed early 90's. May be worth looking into about your brother as well.

[EmersonAilidh]

ElJoMom ~ The lines of my story are a little blurred because we are looking at possibly multiple problems now, but this is basically how it went for me. I got my first tic at four, which was just a weird mouthing thing, & I've had OCD/anxiety issues since as far back as I can remember. In the sixth grade I had what I've come to call my "symptom explosion", which was when I woke up one day with literally debilitating twitches. Screaming, flailing, hitting. Every single part of my body, every movement imaginable, every word & sound you can think of. I was placed in the special ed room on bad days while doctors continued to throw pharmaceuticals at me to no avail. It took about nine months for the tics to subside (they are most definitely still around, just not so explosive) in my case.

 

Tourette's is thought to be genetic, but so is P.A.N.D.A.S. (although I'm sure there are some who would disagree). The one thing I'm a stickler about is finding the infection. Everyone on here gets so caught up in symptoms & tests & such that no one seems to pay enough attention to pinpointing what the infection possibly was. It very well could be P.A.N.D.A.S., but if it was something like Tourette's (which is more likely than usual if it's in the family) I would hate to see a child go through IVIG or weeks of antibiotics when it's not doing them any good.

 

ALSO. I don't know where you guys live or if your daughter's ever been bitten by a tick, but make sure to rule out Lyme Disease before beginning any steroids. It's common among us P.A.N.D.A.S. kids & is made worse by steroids, so it's just something to check on before you start anything like Prednisone.

 

Good luck!!! Have a good weekend. <3

[eljomom]

Thank you for your story! I agree---I want to be as certain as possible before I do anything. Steroids also make Tourette's worse too. How did you get diagnosed PANDAS? Also, there are so many Lyme tests out there--and so many people test negative with Western Blot, but then Igenix is always positive. What's up with that? I've heard IGENIX is a scam. We live in Virginia---heavy tick area. Two of our neighbors have Lyme, but it's taken over a year to finally test positive. I think Lyme is kind of becoming the new catch-all for docs when they cant figure out what the heck is really wrong. Don't get me wrong, i definitely believe it exists, but my one neighbor's LLMD is convinced that she has Lyme, even though she is still testing negative!!

How can you ever find out what the infection WAS, especially if there's so much time going by before finding a doc who will even test for other stuff??

Thanks again for your thoughts:)

[EmersonAilidh]

Lyme is.... about as confusing as it comes, hahah. If I explained everything about why the tests are innacurate & why doctors treat it the way they do I'd take up this whole page. Lyme is a disease rife with politics on the part of most of the doctors describing & researching it. One of the reasons Lyme is so misunderstood is because the symptoms are debatebly even broader than those of P.A.N.D.A.S. Originally it was solely a rheumatological disease consisting of migratory joint pain & a rash, but as the years go by doctors seem to be finding it difficult to wrap their heads around the idea that the offending bacteria (B. Burgdorferi) can effectively inhabit whatever it feels like. Nerves, muscles, even the brain. As the definition of the disease gets wider, the tests get stricter & the possibility of proper diagnosis & treatment gets slimmer because more & more doctors are too busy stroking their egos to accept that Lyme is a multi-systemic, persistent disease (meaning that it isn't always taken care of with one round of abx). For example, two of the proteins seen as so diagnostic for Lyme that they were the primary ingredients in a vaccine for it are not on the Western Blot. Lyme very well may be overdiagnosed in some areas, especially New England, but here in Texas there is not a single LLMD even though we have more than our fair share of ticks. Why? Because state law makes it illegal to treat third-stage Lyme (the type of Lyme you read about on this forum). Every LLMD has had their license revoked or has retired/switched fields to prevent prosecution. Good luck getting diagnosed in the dirty South. Sorry for all that info, but that's basically Lyme in a nutshell. If he doesn't present with physical symptoms, the main differentiator between P.A.N.D.A.S. & Lyme & an ELISA test comes up negative, I wouldn't worry about it, but it's just something to check before starting steroids.

 

Pinpointing P.A.N.D.A.S. was easy in my case. Getting diagnosed, not so much. I was skyhigh for GABHs literally every single time I was swabbed until I was fourteen. Since then, I've only had two negative tests. My symptoms can be traced back to when I was four but the "symptom explosion" that came about when I was eleven we now kind of blame on Lyme. I had been seeing a neurologist who did little more than stock my medicine cabinet for about a year before a psychologist showed me P.A.N.D.A.S. after I mentioned how much school I had missed from strep (that was almost always asymptomatic). She diagnosed me, although I'm not too entirely sure how much a psychologist's diagnosis counts for, & my neurologist's exact words were "You are a textbook case of P.A.N.D.A.S., but it doesn't exist." -____-