Yeast, tics, OCD...help...

[ForyouCG]

Hello to all..can anyone please give me some advice? My son developed "thrush" while using biaxin for only four days. This unfortunate episode sent him to the hospital where he was hospitalized for 6 days. The thrush was on his tongue, gums and throat, it was very painful for him. I was giving him probiotics while taking the biaxin and I know to give it 4 hours apart, so I'm confused. In the hospital he was put on anti-fungals, one through an IV and the other orally, still is on an anti-fungal. The vocal/motor tics were slightly decreasing when this happened...was it the biaxin..hmmmm. Now he has OCD symptoms, like repetitive phrases that he wants me to repeat just until it sounds right. He will do this the whole entire day and it's also mixed with some tics. He's has severe seperation anxiety to the point where I cannot leave his side, and if I do, I have to tell him I will be right back or he will come looking for me. My dearl son is also autistic and even with the autism, these symptoms never existed. As I look back on his autism diagnosis, I wonder if he had PANDAS all along. I'm looking forward to his appt with his PANDAS doc soon. I wonder what is the next step, taking into consideration that he developed severe thrush and with autism that can be a disaster. Please, can anyone shed some light to this unfortunate issue?

Thank you and God Bless

[Fixit]

Hello to all..can anyone please give me some advice? My son developed "thrush" while using biaxin for only four days. This unfortunate episode sent him to the hospital where he was hospitalized for 6 days. The thrush was on his tongue, gums and throat, it was very painful for him. I was giving him probiotics while taking the biaxin and I know to give it 4 hours apart, so I'm confused. In the hospital he was put on anti-fungals, one through an IV and the other orally, still is on an anti-fungal. The vocal/motor tics were slightly decreasing when this happened...was it the biaxin..hmmmm. Now he has OCD symptoms, like repetitive phrases that he wants me to repeat just until it sounds right. He will do this the whole entire day and it's also mixed with some tics. He's has severe seperation anxiety to the point where I cannot leave his side, and if I do, I have to tell him I will be right back or he will come looking for me. My dearl son is also autistic and even with the autism, these symptoms never existed. As I look back on his autism diagnosis, I wonder if he had PANDAS all along. I'm looking forward to his appt with his PANDAS doc soon. I wonder what is the next step, taking into consideration that he developed severe thrush and with autism that can be a disaster. Please, can anyone shed some light to this unfortunate issue?

Thank you and God Bless

 

when my son started biaxin...he also developed thrush..

and i believe the is the crux of his vocals...as he started a high pitch screech 3 days into the dose

when we added augmentin...about 10 days into it(still doing biaxin) he developed muscle joint pain

what happens is the abx wipe out everything and let the fungus take over and it get into muscles etc

 

so we restated aug with diflucan ....no muscle pain...still had screech

we added vanco screech went away.....

we had a couple of days with nytatin w/o coverage of vanco and screech came back

 

we have restared vanco and diflucan.,,screech gone...but still have other vocals...waiting.......

i'm starting to understand more and more how digestion is important in this...how it is the other brain....

i think phasmid from the board mentioned something about the vagus nerve???? it's somewhere in the

the stomach or intestines and goes right to the brain????? i think

[ForyouCG]

Thanks for your response. You are sooo right. The stomach affects the brain and if there is inflammation in the stomach, there is inflammation in the brain. Dealing with a child with autism, I've always been very cautious about yeast and the havoc it can cause in our children. My question is if my son is put on another antibiotic will he also be put on an antifungal and if so how safe is that? It sounds like yours was on an antifungal while on antibiotics.

Changing topic......I just want to say that when my son was younger and he suffered with asthma, his pediatrician would put him on prednisone for 5 days and his autistic symptoms would improve dramatically....I mean to a point where he was not showing signs of autism. I remember telling my mom..if steroids were a safe med to take for a long time, this would definitely be considered for autism.

And now I know that a steroid burst is considered for PANDAS to confirm autoimmune. Makes me wonder........

Thanks again.....

[peglem]

Thanks for your response. You are sooo right. The stomach affects the brain and if there is inflammation in the stomach, there is inflammation in the brain. Dealing with a child with autism, I've always been very cautious about yeast and the havoc it can cause in our children. My question is if my son is put on another antibiotic will he also be put on an antifungal and if so how safe is that? It sounds like yours was on an antifungal while on antibiotics.

Changing topic......I just want to say that when my son was younger and he suffered with asthma, his pediatrician would put him on prednisone for 5 days and his autistic symptoms would improve dramatically....I mean to a point where he was not showing signs of autism. I remember telling my mom..if steroids were a safe med to take for a long time, this would definitely be considered for autism.

And now I know that a steroid burst is considered for PANDAS to confirm autoimmune. Makes me wonder........

Thanks again.....

Well, My daughter's pediatrician and I believe that her rather severe autism was caused by PANDAS.

[Fixit]

Thanks for your response. You are sooo right. The stomach affects the brain and if there is inflammation in the stomach, there is inflammation in the brain. Dealing with a child with autism, I've always been very cautious about yeast and the havoc it can cause in our children. My question is if my son is put on another antibiotic will he also be put on an antifungal and if so how safe is that? It sounds like yours was on an antifungal while on antibiotics.

Changing topic......I just want to say that when my son was younger and he suffered with asthma, his pediatrician would put him on prednisone for 5 days and his autistic symptoms would improve dramatically....I mean to a point where he was not showing signs of autism. I remember telling my mom..if steroids were a safe med to take for a long time, this would definitely be considered for autism.

And now I know that a steroid burst is considered for PANDAS to confirm autoimmune. Makes me wonder........

Thanks again.....

 

We only figured the anitfungal through tiral and error....

do you think ivig might be an option for you son....seems like it might be as per burst....

[ForyouCG]

Peglem...that is so interesting. I feel that may be true with my son. When my son was a baby, he had eczema and severe colic and would spit up quite a bit. Then when age 3, he had many ear infections, allergies, sinus infections, strep throat, one negative posititve which turned into scarlet fever, asthma and diagnosed with PDD-NOS at age 3 1/2. I've always had a feeling in my heart that would make me feel something went horribly wrong with his immune system. He is 14 yrs. old now and the drastic PANDAS symptoms really started to occur in late March, prior to this in October he was diagnosed with Tourettes and as months went by, the vocal tics got worse. Prior to October, in September he had another strep infection. Now looking back at things the pieces of the puzzle are starting to fall in place.

It's tough....Heartbreaking...but we must continue to go on and do the very best for our children no matter how hard it gets. At times it feels like an unending battle and you're sinking in deep waters, but I also know that there is a merciful God who will never forsake us.

[ForyouCG]

Fixit...IVIG is an option I'm sure, but I have to educate myself more about it before I make that decision. If it comes to that and it's something that will help heal him then I will do it. I must be honest and say once again that this is all very new to me and I am learning day by day about PANDAS. Some of the treatments can be a little scary but I don't want to see my son suffer with this disorder neither. This is why I like getting advice from you all. I need it...it helps me understand...it helps me figure things out. Thanks.....

[Stephanie2]

Have you ever attempted biomedical interventions for your son (DAN protocol)? If not, now may be a good time. A typical PANDAS doctor will not look at things like yeast or bacteria that can be created in the gut with long-term antibiotics. I cannot say enough about our practitioner, Scott Smith, with www.icdrc.org

 

Both of my boys have either been on the spectrum (or very close) and they are doing SOOO much better. My 5 year old is the closest to being 100% neurotypical than he ever has been. My 2 yo is fully recovered from autism but still has issues with pandas. Scott (and our previous DAN doctor) have worked miracles in my children.

 

My boys get yeast and bacteria from the antibiotics. We, too, have to give antifungals (diflucan, ketoconazole) and sometimes vancomycin (5yo developed klebsiella, 2 yo developed clostridia, both of which cause OCD). They are both on high-dose augmentin for pandas. They each take 400 billion cfu's of probiotics daily, which has made a tremendous difference in their ability to tolerate the antibiotics.

 

We also use spironolactone, which works a little like steroids, however it is safe to use long-term. It is anti-inflammatory and immune modulatory. This has made a remarkable difference in my 5yo and a decent difference in my 2yo in terms of pandas symptoms (also helped to bring about more speech in my 2yo).

 

My 5yo has also received one IVIG and we may be doing more soon. Both of my boys have been responders to steroids.

 

Best of luck!

Stephanie

Fixit...IVIG is an option I'm sure, but I have to educate myself more about it before I make that decision. If it comes to that and it's something that will help heal him then I will do it. I must be honest and say once again that this is all very new to me and I am learning day by day about PANDAS. Some of the treatments can be a little scary but I don't want to see my son suffer with this disorder neither. This is why I like getting advice from you all. I need it...it helps me understand...it helps me figure things out. Thanks.....

Edited June 7, 2010 by Stephanie2

[ForyouCG]

Have you ever attempted biomedical interventions for your son (DAN protocol)? If not, now may be a good time. A typical PANDAS doctor will not look at things like yeast or bacteria that can be created in the gut with long-term antibiotics. I cannot say enough about our practitioner, Scott Smith, with www.icdrc.org

 

Both of my boys have either been on the spectrum (or very close) and they are doing SOOO much better. My 5 year old is the closest to being 100% neurotypical than he ever has been. My 2 yo is fully recovered from autism but still has issues with pandas. Scott (and our previous DAN doctor) have worked miracles in my children.

 

My boys get yeast and bacteria from the antibiotics. We, too, have to give antifungals (diflucan, ketoconazole) and sometimes vancomycin (5yo developed klebsiella, 2 yo developed clostridia, both of which cause OCD). They are both on high-dose augmentin for pandas. They each take 400 billion cfu's of probiotics daily, which has made a tremendous difference in their ability to tolerate the antibiotics.

 

We also use spironolactone, which works a little like steroids, however it is safe to use long-term. It is anti-inflammatory and immune modulatory. This has made a remarkable difference in my 5yo and a decent difference in my 2yo in terms of pandas symptoms (also helped to bring about more speech in my 2yo).

 

My 5yo has also received one IVIG and we may be doing more soon. Both of my boys have been responders to steroids.

 

Best of luck!

Stephanie

Fixit...IVIG is an option I'm sure, but I have to educate myself more about it before I make that decision. If it comes to that and it's something that will help heal him then I will do it. I must be honest and say once again that this is all very new to me and I am learning day by day about PANDAS. Some of the treatments can be a little scary but I don't want to see my son suffer with this disorder neither. This is why I like getting advice from you all. I need it...it helps me understand...it helps me figure things out. Thanks.....

[Phasmid]

Nice to talk with you today Fixit! So happy that you may be seeing improvement. I am hoping and praying!!

 

[ForyouCG]

Thank you Stephanie2 and God Bless your two boys...I am going to make an appt with a DAN doctor by the name of Dr. James Neubrander, he's in New Jersey. From what I have researched, he's really good. My son is on a GFCF diet and takes a great multivitamin with minerals and anti-oxidants, probiotic and ezymes. It's amazing how I must treat both..the autism and the PANDAS..both autoimmune disorders. Double whammy

If you don't mind telling me, what is the name of the probiotic you're giving your boys? As far as the spironolactone, is that a prescribed medication? Is it used for autism or PANDAS? Or both?

How would the doctors detect the bad bacteria in the gut? Is it through a blood test or some other test? How was the IVIG procedure done for your son? Was it done in the hospital by a doctor or nurse? Did you see any side effects?

I apologize in I'm asking too many questions, I hope you don't mind.

I wish you and your precious boys the very best....

[Fixit]

did you ever write to doc t in regards to your new protocol....

did he reply???

 

is there a specific test for klebsiella?

[Stephanie2]

I am going to answer in all caps within your message:

 

Thank you Stephanie2 and God Bless your two boys...I am going to make an appt with a DAN doctor by the name of Dr. James Neubrander, he's in New Jersey. From what I have researched, he's really good YES, HE HAS A GOOD REPUTATION BUT MAKE SURE HE IS ABLE TO TREAT PANDAS. OUR FIRST DAN DOCTOR, ANDREW LEVINSON, ALSO HAS A VERY GOOD REPUTATION BUT HE COULD NOT/WOULD NOT TREAT PANDAS AND I HAD TO MOVE ON. My son is on a GFCF diet and takes a great multivitamin with minerals and anti-oxidants, probiotic and ezymes. It's amazing how I must treat both..the autism and the PANDAS..both autoimmune disorders. Double whammy

If you don't mind telling me, what is the name of the probiotic you're giving your boys? WWW.CUSTOMPROBIOTICS.COM As far as the spironolactone, is that a prescribed medication? YES Is it used for autism or PANDAS? Or both? BOTH, HERE IS A LINK TO A PAPER ABOUT SPIRO THAT WAS WRITTEN BY THE DAN GROUP WE GO TO:

http://www.icdrc.org/documents/Bradstreet%...thor%20Copy.pdf

 

How would the doctors detect the bad bacteria in the gut? ORGANIC ACID TEST (OAT) WHICH IS A URINE TEST. SOMETIMES THEY WILL FOLLOW THAT UP WITH A STOOL ANALYSIS IF NEEDED. Is it through a blood test or some other test? How was the IVIG procedure done for your son? Was it done in the hospital by a doctor or nurse? WE HAD IVIG DONE AT THE DAN DOCTORS OFFICE Did you see any side effects? WITHIN 24 HOURS MY SON DEVELOPED A BAD HEADACHE, FEVER, NAUSEA. SCOTT HAD PRESCRIBED A STEROID FOR ME TO USE IN CASE OF THESE SYMPTOMS. I GAVE HIM THE STEROID RIGHT AWAY AND WITHIN AN HOUR ALL SYMPTOMS WERE GONE. THERE WAS SOME REGRESSION THAT FOLLOWED (TICS GETTING WORSE AND STUFF LIKE THAT - INCREASE IN PANDAS SYMPTOMS). I ENDED UP STARTING SPIRO ABOUT 3 WEEKS POST IVIG AND IT MADE A HUGE DIFFERENCE SO IT IS NOT CLEAR WHETHER OR NOT THE IVIG DID ANYTHING.

I apologize in I'm asking too many questions, I hope you don't mind. PLEASE! I DON'T MIND! THIS JOURNEY CAN BE SUCH A ZIGZAG UNTIL YOU FIND THE RIGHT COURSE - ANYTHING I CAN DO TO HELP ANOTHER MOM GO IN THE RIGHT DIRECTION!!

 

IF NEUBRANDER DOES NOT WORK OUT FOR PANDAS, MY DAN PRACTITIONER HAS TWO BOYS WITH PANDAS SO HE HAS A TON OF EXPERIENCE. WWW.ICDRC.ORG

I wish you and your precious boys the very best....THANK YOU AND BEST WISHES TO YOU, TOO