Re: Strep and tics

[Guest guest]

All three of my kids have it. There is a yahoo group called pandas_autism. I highly recommend you join. PANDAS is extremely complicated to deal with, and there is a lot of great info in that group. My kids have been taking olive leaf extract for a year and a half. It was a HUGE change right off the bat with negative side effects. The triuble with nautral antibiotics is it can take longer and you have to take more...but they don't come with the negatives of script antibiotics. I had to add kyolic garlic 6 months ago b/c we were seeing some P.A.N.D.A.S. breaking through . So now they take the kyolic and the OLE and are doing fabulous...especially now that strep season is over. Another thing to look out for is that allergies can make P.A.N.D.A.S. worse...so if he has allergies it can make things more difficult, so don't be discouraged if things don't change drastically right away

[Guest guest]

I put a post up regarding PANDAS several weeks ago & only received 1 response. We did several tests & 1 of the results came back that our son had had Strep sometime in December which we knew nothing about. Neither my husband nor I recall him every acting sick or having any symptoms but the results were literally & figuratively off the charts. He has an extremely high tolerance for pain but we assumed that we should have seen SOMETHING. The fact that he is non-verbal & largely non-communicative makes it difficult for us to determine what he's experiencing. We feel awful that we didn't pick up on any of the Strep symptoms at the time.

His doctor is pretty sure these manifestations are the result of PANDAS. He has had a huge increase in OCD-like symptoms in the past month or so that are beginning to impede his learning . His routines are becoming more fixed & we are in the midst of a move in a few weeks to another state which concerns us even more. He also has increased his "tic-like" symptoms- especially in regard to jerking arm movements & mouthing objects as well which really was a non-issue before. Any recommendations or personal experience with PANDAS following Strep would be appreciated.

Thank you,Dolly

Subject: RE: Strep and ticsTo: texas-autism-advocacy Date: Tuesday, May 17, 2011, 11:21 PM

All three of my kids have it. There is a yahoo group called pandas_autism. I highly recommend you join. PANDAS is extremely complicated to deal with, and there is a lot of great info in that group. My kids have been taking olive leaf extract for a year and a half. It was a HUGE change right off the bat with negative side effects. The triuble with nautral antibiotics is it can take longer and you have to take more...but they don't come with the negatives of script antibiotics. I had to add kyolic garlic 6 months ago b/c we were seeing some P.A.N.D.A.S. breaking through . So now they take the kyolic and the OLE and are doing fabulous...especially now that strep season is over. Another thing to look out for is that allergies can make P.A.N.D.A.S. worse...so if he has allergies it can make things more difficult, so don't be discouraged if things don't change drastically right

away

[Guest guest]

Thanks for your responses regarding PANDAS & an increase in OCD symptoms. We are considering Zithromax but would like to find out people's opinions/experiences who have put their child on this or any other medication to help minimize the side effects. Our son is 10 & non-verbal & these recent symptoms seem to have worsened his condition even more so.

Thank you,Dolly

Subject: RE: Strep and ticsTo: texas-autism-advocacy Date: Tuesday, May 17, 2011, 11:21 PM

All three of my kids have it. There is a yahoo group called pandas_autism. I highly recommend you join. PANDAS is extremely complicated to deal with, and there is a lot of great info in that group. My kids have been taking olive leaf extract for a year and a half. It was a HUGE change right off the bat with negative side effects. The triuble with nautral antibiotics is it can take longer and you have to take more...but they don't come with the negatives of script antibiotics. I had to add kyolic garlic 6 months ago b/c we were seeing some P.A.N.D.A.S. breaking through . So now they take the kyolic and the OLE and are doing fabulous...especially now that strep season is over. Another thing to look out for is that allergies can make P.A.N.D.A.S. worse...so if he has allergies it can make things more difficult, so don't be discouraged if things don't change drastically right

away

[Guest guest]

There are many types of strep bacteria. Many probiotics contain a beneficial strep organism. However, if strep is an issue for you....some docs are saying to avoid any strep organisms altogether.

Subject: RE: Strep and ticsTo: texas-autism-advocacy Date: Tuesday, May 17, 2011, 11:21 PM

All three of my kids have it. There is a yahoo group called pandas_autism. I highly recommend you join. PANDAS is extremely complicated to deal with, and there is a lot of great info in that group. My kids have been taking olive leaf extract for a year and a half. It was a HUGE change right off the bat with negative side effects. The triuble with nautral antibiotics is it can take longer and you have to take more...but they don't come with the negatives of script antibiotics. I had to add kyolic garlic 6 months ago b/c we were seeing some P.A.N.D.A.S. breaking through . So now they take the kyolic and the OLE and are doing fabulous...especially now that strep season is over. Another thing to look out for is that allergies can make P.A.N.D.A.S. worse...so if he has allergies it can make things more difficult, so don't be discouraged if things don't change drastically right

away

[Guest guest]

I highly recommend putting him on olive leaf extract. My big kids take 1000 mg morning and evening. They started on 500mg morning and evening. All the things you described sound like PANDAS. Don't feel bad about not noticing the strep. My three kids are verbal...and I've also heard this from Docs and other Mom's...but strep doesn't mean pain. Most of the time they'll have it with no symptoms.If you ever have any questions and you're not getting a response from the group feel free to e-mail me. I haven't been as active in the group as I'd like lately... two kids with autism and PANDASith , one kid with Lyme and PANDAS, a Mom with Fibromyalgia and degenrative spine disease and a husband who is a pilot keep me extremely busy. I'm way more likely to see an e-mail Sorry for not being around when you had questions before. I can't wait for things to slow down around here so I can be more active:)

[Guest guest]

Thanks, . I feel so unequipped sometimes & I just have 1 child who happens to be on the spectrum. I feel sorry for myself ( & my son) & some days just ask- what now? I admire people like you who seem to handle things in stride. We're in the midst to a move to SD & wonder if we're doing the right thing for our son. Thanks again for your input.Sent from my iPhone

I highly recommend putting him on olive leaf extract. My big kids take 1000 mg morning and evening. They started on 500mg morning and evening. All the things you described sound like PANDAS. Don't feel bad about not noticing the strep. My three kids are verbal...and I've also heard this from Docs and other Mom's...but strep doesn't mean pain. Most of the time they'll have it with no symptoms.If you ever have any questions and you're not getting a response from the group feel free to e-mail me. I haven't been as active in the group as I'd like lately... two kids with autism and PANDASith , one kid with Lyme and PANDAS, a Mom with Fibromyalgia and degenrative spine disease and a husband who is a pilot keep me extremely busy. I'm way more likely to see an e-mail Sorry for not being around when you had questions before. I can't wait for things to slow down around here so I can be more active:)

[Guest guest]

There's a PANDAS group on Yahoo that's really active. You might find them helpful. Look for PANDAS_Autism under yahoo groups.

Byrne

Read our kids'stories online at Caring Bridge - http://www.caringbridge.org/visit/prestonbyrne and http://www.caringbridge.org/visit/toribyrne

To: "Texas-Autism-Advocacy " <Texas-Autism-Advocacy >Sent: Thu, May 19, 2011 2:05:40 PMSubject: Re: Strep and tics

Thanks, . I feel so unequipped sometimes & I just have 1 child who happens to be on the spectrum. I feel sorry for myself ( & my son) & some days just ask- what now? I admire people like you who seem to handle things in stride. We're in the midst to a move to SD & wonder if we're doing the right thing for our son. Thanks again for your input.Sent from my iPhone

I highly recommend putting him on olive leaf extract. My big kids take 1000 mg morning and evening. They started on 500mg morning and evening. All the things you described sound like PANDAS. Don't feel bad about not noticing the strep. My three kids are verbal...and I've also heard this from Docs and other Mom's...but strep doesn't mean pain. Most of the time they'll have it with no symptoms.If you ever have any questions and you're not getting a response from the group feel free to e-mail me. I haven't been as active in the group as I'd like lately... two kids with autism and PANDASith , one kid with Lyme and PANDAS, a Mom with Fibromyalgia and degenrative spine disease and a husband who is a pilot keep me extremely busy. I'm way more likely to see an e-mail Sorry for not being around when you had questions before. I can't wait for things to slow down around here so I can be more

active:)