New with Questions

[Stephanie2]

Hi! I have been browsing and thought I would introduce myself and ask a couple of questions.

 

I have been searching for answers for my 4.5 yo for over 3 years now and I think that we have finally found a huge piece of the puzzle - PANDAS! I have had both of my children with a DAN doctor in Miami. While the treatments have been amazing for both of my boys, my 4.5 yo continued to have "episodes" of off-the-wall behavior (emotional lability, ocd, tics, aggression) which I later found were happeneing with strep throat infections. I am also starting to see a pattern with my 18 month old, but not quite sure yet...

 

I have to say that we have done the whole antibiotic thing several times. While it helps almost immediately, there always seems to be a reoccurance of symptoms after the rx runs out and then a gradual improvement after that. Then - BAM - another episode. So, I have experimented with Oil of Oregano and maybe it is my imagination, but it seems to me that I get him back within 1-3 days! Does anyone have any experience with the use of herbs to control this (there is a woman on one of the yahoo groups who used Olive Leaf Extract for a year after zithromax failed. I find that Oil of Oregano works better though).

 

Also, can someone explain how we are supposed to use Advil? Would I use it during the acute phase of the exacerbation? What does it do?

 

Oh, one more thing. It seems like I have obseved a pattern with strep throat occuring 1-2 weeks following a stomach virus with vomitting (seen this 4 times now). Does anyone know what that's all about?

 

Thanks, I have a feeling that I will be learning a lot here!

Stephanie

[thereishope]

Welcome, Stephanie! I find it amazing how all of us living with this are told that PANDAS is rare and not many cases yet we all keep finding each other.

 

All I can really give is my opinion on the use of Advil. Ibruprofen is used to bring down the inflamation on the basal ganglia. I believe it it used at different times for different people. For my son, I first used dye free Ibruprofen for PANDAS when he had a cold and I saw some behaviors resurfacing. It helped like clockwork. I now intend on using it whenever I see he is sick and PANDAS symptoms resurface. Also, if he ever has strep again ( I must use the word "if" to keep my sanity) I first intend on requesting a steroid to piggyback the antibiotic. If the doc won't give it, I already know I will religiously give him Ibruprofen for a couple weeks. I will do anything I can to try to keep to much inflamation from occurring. Note:you cannot take Ibruprofen and a steroid at the same time. One or another.

[ShaesMom]

Hi! I have been browsing and thought I would introduce myself and ask a couple of questions.

 

I have been searching for answers for my 4.5 yo for over 3 years now and I think that we have finally found a huge piece of the puzzle - PANDAS! I have had both of my children with a DAN doctor in Miami. While the treatments have been amazing for both of my boys, my 4.5 yo continued to have "episodes" of off-the-wall behavior (emotional lability, ocd, tics, aggression) which I later found were happeneing with strep throat infections. I am also starting to see a pattern with my 18 month old, but not quite sure yet...

 

I have to say that we have done the whole antibiotic thing several times. While it helps almost immediately, there always seems to be a reoccurance of symptoms after the rx runs out and then a gradual improvement after that. Then - BAM - another episode. So, I have experimented with Oil of Oregano and maybe it is my imagination, but it seems to me that I get him back within 1-3 days! Does anyone have any experience with the use of herbs to control this (there is a woman on one of the yahoo groups who used Olive Leaf Extract for a year after zithromax failed. I find that Oil of Oregano works better though).

 

Also, can someone explain how we are supposed to use Advil? Would I use it during the acute phase of the exacerbation? What does it do?

 

Oh, one more thing. It seems like I have obseved a pattern with strep throat occuring 1-2 weeks following a stomach virus with vomitting (seen this 4 times now). Does anyone know what that's all about?

 

Thanks, I have a feeling that I will be learning a lot here!

Stephanie

 

Welcome. I thought I remembered reading something on a previous post about Olive Oil extract. this is it

http://www.latitudes.org/forums/index.php?showtopic=5201

 

I give my daughter Ibuprofen every morning right along with her abx. If she seems to be having a bad day, I give her a second dose in the afternoon. the daily dose is because it seems to help keep her on an even keel and helps with the leg pain. The days I skip it I always notice a difference in her mood.

[pmoreno]

Hi! I have been browsing and thought I would introduce myself and ask a couple of questions.

 

I have been searching for answers for my 4.5 yo for over 3 years now and I think that we have finally found a huge piece of the puzzle - PANDAS! I have had both of my children with a DAN doctor in Miami. While the treatments have been amazing for both of my boys, my 4.5 yo continued to have "episodes" of off-the-wall behavior (emotional lability, ocd, tics, aggression) which I later found were happeneing with strep throat infections. I am also starting to see a pattern with my 18 month old, but not quite sure yet...

 

I have to say that we have done the whole antibiotic thing several times. While it helps almost immediately, there always seems to be a reoccurance of symptoms after the rx runs out and then a gradual improvement after that. Then - BAM - another episode. So, I have experimented with Oil of Oregano and maybe it is my imagination, but it seems to me that I get him back within 1-3 days! Does anyone have any experience with the use of herbs to control this (there is a woman on one of the yahoo groups who used Olive Leaf Extract for a year after zithromax failed. I find that Oil of Oregano works better though).

 

Also, can someone explain how we are supposed to use Advil? Would I use it during the acute phase of the exacerbation? What does it do?

 

Oh, one more thing. It seems like I have obseved a pattern with strep throat occuring 1-2 weeks following a stomach virus with vomitting (seen this 4 times now). Does anyone know what that's all about?

 

Thanks, I have a feeling that I will be learning a lot here!

Stephanie

 

 

After a stomach virus, immune system is weakened - more susceptible to other things like strep.

 

Oil of oregano definitely better than oil of olive leaf. Really works to get rid of flu symptoms & helps get rid of strep (and viruses). (it's the most potent natural antibiotic, anti-fungal & anti-viral)

 

I'd be careful about using too much advil on a regular basis. It is a good anti-inflammatory, but too much can cause undue stress on the kidneys. Also, it can be a little rough on the digestive system besides.

[Iowamom]

Hi! I have been browsing and thought I would introduce myself and ask a couple of questions.

 

I have been searching for answers for my 4.5 yo for over 3 years now and I think that we have finally found a huge piece of the puzzle - PANDAS! I have had both of my children with a DAN doctor in Miami. While the treatments have been amazing for both of my boys, my 4.5 yo continued to have "episodes" of off-the-wall behavior (emotional lability, ocd, tics, aggression) which I later found were happeneing with strep throat infections. I am also starting to see a pattern with my 18 month old, but not quite sure yet...

 

I have to say that we have done the whole antibiotic thing several times. While it helps almost immediately, there always seems to be a reoccurance of symptoms after the rx runs out and then a gradual improvement after that. Then - BAM - another episode. So, I have experimented with Oil of Oregano and maybe it is my imagination, but it seems to me that I get him back within 1-3 days! Does anyone have any experience with the use of herbs to control this (there is a woman on one of the yahoo groups who used Olive Leaf Extract for a year after zithromax failed. I find that Oil of Oregano works better though).

 

Also, can someone explain how we are supposed to use Advil? Would I use it during the acute phase of the exacerbation? What does it do?

 

Oh, one more thing. It seems like I have obseved a pattern with strep throat occuring 1-2 weeks following a stomach virus with vomitting (seen this 4 times now). Does anyone know what that's all about?

 

Thanks, I have a feeling that I will be learning a lot here!

Stephanie

 

 

After a stomach virus, immune system is weakened - more susceptible to other things like strep.

 

Oil of oregano definitely better than oil of olive leaf. Really works to get rid of flu symptoms & helps get rid of strep (and viruses). (it's the most potent natural antibiotic, anti-fungal & anti-viral)

 

I'd be careful about using too much advil on a regular basis. It is a good anti-inflammatory, but too much can cause undue stress on the kidneys. Also, it can be a little rough on the digestive system besides.

 

We had issues with what I believe to be rebound headaches. They can occur with NSAIDS. Cutting back on the dose helped. Dawn

[Kayanne]

Can oil of oregano be used with antibiotics? In the thread referanced above, FallingApart said that you can't use Olive Leaf Extract with antibiotics so I was wondering if any one knows...the couple of websites that I went to didn't mention it so I'm assuming that you can.

[FallingApart]

I would wonder the same thing about using it with abx. Is it one or the other or can you do both?

[kim]

I would really encourage anyone who is looking at alternatives/additions to antibiotics to join and read here

 

http://www.ch3nutrigenomics.com/phpBB2/welcome.html

 

lots of strep info. There is a whole list of supplements that are recommended for ridding the body of strep. Neem is one that comes to mind.

 

There is a Dr. in California who closely follows the Yasko protocol (Dr. Nancy Mullan). Two of our members have treated their suspected PANDA children using info. you'll find there while working with this Dr. I posted her web site under the "helpful physicians thread." Neither parent posts much anymore (i take that as a good sign!) One was Sunshine the other was Dominique/Dee. Sunshine popped in not too long ago and said that her son is still doing remarkably well after being a pretty ill little guy.

 

This is older, but might be interesting to read thru

discussion of strep starts on page 6

http://www.generationrescue.org/pdf/yasko.pdf

[KeithandElizabeth]

Hi Kim:

 

Thank you so much for this information. My 10 1/2 year old daughter has very high Cunningham numbers without any PANDA symptoms. Her CAM KinaseII was 171% and her ANTI-Tubulin was 4000 with 1000 being the high norm. I have this gut feeling that she recently had strep in her gut which caused severe GI issues. Anyway, I plan to go to this web site and try to use some alternative therapies on her since all of the other doctors are saying that I basically need to wait and see with her.

 

Do you know if Sunshine and the other members with PANDA children did IVIG or only alternative therapies?

 

Thanks,

 

Elizabeth

[kim]

Elizabeth,

 

I'm not aware of either child having IVIG. Sunshine did the genetic testing and had physician assistance on treatments based on those results and other testing. Yasko's program is really based around supporting pathways that aren't functioning normally due to info gained from the genetic testing (at it's best). I don't think Dominique did the genetics (could be wrong about that) but had a pretty extensive program, again based on tests that were physician assisted.

 

I'm sure it's frustrating to have this info with nothing but a recommendation to wait and see. We need insurance coverage desperately for good Dr.s who guide therapies using alternative therapies.

 

Wondering if you got the blood work copies yet?