Update on my 2 PANDAS boys

[Stephanie2]

I'll give a brief timeline of what we have done and where we are:

 

DS5:

Jan. steroid burst and prophylactic azith - little response

Mar. IVIG 1mg/kg - good response after 3.5 weeks, but then got strep a few weeks later

April Spironolactone - little response; very high dose probiotics and vancomycin for klebsiella infection - HUGE response, aggression 100% gone!

May high dose abx - very good response; diflucan/ketoconozole - very good at getting control of yeast.

June steroid burst - excellent response, only lasted one week; LDN (low dose naltrexone) great response

 

 

DS2:

Jan. first MAJOR exacerbation which lead to skin picking/impetigo - tics, rages etc.

Feb. impetigo lead to more pandas, which lead to more skin picking, which lead to more impetigo - vicious cycle. High dose augmentin - excellent response

May steroid burst -awesome response, even cleared up some residual autism issues - but only lasted 5 days, then AWFUL rebound inflammation; spironolactone - good response but mainly just an increase in speech (again, residual autism issue).

June augmentin failed for the first time, then switched to azith which did nothing. Then started prednisone taper (20 days). I gave our prednisone taper update on another thread, but in a nutshell he responded the first week, but as soon as we started tapering down, OCD started to come back. just finished taper today, starting LDN tonight - praying for a big response!

 

 

Overall, we are in the best place we have been with DS5 since he was 18 months old - when all this pandas/autism nonsense started (he wasn't dx'd with autism but he was a "border" kid)! Not only is his pandas about 90% controlled, but any and all autism issues are 100% resolved! Even in the past 6 weeks he has developed pretend play for the FIRST TIME EVER! It is amazing to hear him make car noises and pretend to be a character, etc, and know he is not "scripting" the lines of a movie or something. He has the best eye contact, sense of humor and just all around perfect kid! What a miracle we are witnessing (I could go on and on b/c we have been to ###### and back with this child)! BTW, have to give some huge credit and a "shout out" to Scott Smith of ICDRC.org for this So, for now we are waiting to see how far the LDN takes us and then we will pursue IVIG if needed.

 

 

DS2 has been much more affected by autism/pandas than DS5. He is still little and we have a ways to go with him (we also have a ton more options to pursue - chelation, secretin, more diet modification, IVIG, etc...). While I feel that 90% of his ealy autism symptoms are completely gone (normal socialization, responds to affection, great eye contact, etc.) there is still some progress I would like to see happen. He is still very speech delayed, but he does have words. He also has a ton of receptive language and nonverbal expressive language. He is really "with it". I would also like to see him initiate affection. While it does happen from time to time, I know he has more where that came from. I would also like to get on top of pandas 100% (this has just exploded for him in the past 6 months). If the LDN does not do miracles for him, I will be pursuing IVIG for him as well...

 

Well, I hope that my story brightens someone's day! We sure are smiling and taking a deep breath around here!

 

Stephanie

[AmberM]

So, did you scrap the spiro, or are you adding the LDN on top of that? We have an appt on friday with our DAN! and I'm hoping to get some help. The last two weeks have been awful for us...... I think clostridia and yeast are rearing their ugly heads. It really helps me to hear your progress. Please keep us updated on the LDN!

-Amber

[Stephanie2]

Doing spiro and LDN for both kids. Hope you get some answers soon, I know you are not having fun!

 

So, did you scrap the spiro, or are you adding the LDN on top of that? We have an appt on friday with our DAN! and I'm hoping to get some help. The last two weeks have been awful for us...... I think clostridia and yeast are rearing their ugly heads. It really helps me to hear your progress. Please keep us updated on the LDN!

-Amber

[saidie10]

I'll give a brief timeline of what we have done and where we are:

 

DS5:

Jan. steroid burst and prophylactic azith - little response

Mar. IVIG 1mg/kg - good response after 3.5 weeks, but then got strep a few weeks later

April Spironolactone - little response; very high dose probiotics and vancomycin for klebsiella infection - HUGE response, aggression 100% gone!

May high dose abx - very good response; diflucan/ketoconozole - very good at getting control of yeast.

June steroid burst - excellent response, only lasted one week; LDN (low dose naltrexone) great response

 

 

DS2:

Jan. first MAJOR exacerbation which lead to skin picking/impetigo - tics, rages etc.

Feb. impetigo lead to more pandas, which lead to more skin picking, which lead to more impetigo - vicious cycle. High dose augmentin - excellent response

May steroid burst -awesome response, even cleared up some residual autism issues - but only lasted 5 days, then AWFUL rebound inflammation; spironolactone - good response but mainly just an increase in speech (again, residual autism issue).

June augmentin failed for the first time, then switched to azith which did nothing. Then started prednisone taper (20 days). I gave our prednisone taper update on another thread, but in a nutshell he responded the first week, but as soon as we started tapering down, OCD started to come back. just finished taper today, starting LDN tonight - praying for a big response!

 

 

Overall, we are in the best place we have been with DS5 since he was 18 months old - when all this pandas/autism nonsense started (he wasn't dx'd with autism but he was a "border" kid)! Not only is his pandas about 90% controlled, but any and all autism issues are 100% resolved! Even in the past 6 weeks he has developed pretend play for the FIRST TIME EVER! It is amazing to hear him make car noises and pretend to be a character, etc, and know he is not "scripting" the lines of a movie or something. He has the best eye contact, sense of humor and just all around perfect kid! What a miracle we are witnessing (I could go on and on b/c we have been to ###### and back with this child)! BTW, have to give some huge credit and a "shout out" to Scott Smith of ICDRC.org for this So, for now we are waiting to see how far the LDN takes us and then we will pursue IVIG if needed.

 

 

DS2 has been much more affected by autism/pandas than DS5. He is still little and we have a ways to go with him (we also have a ton more options to pursue - chelation, secretin, more diet modification, IVIG, etc...). While I feel that 90% of his ealy autism symptoms are completely gone (normal socialization, responds to affection, great eye contact, etc.) there is still some progress I would like to see happen. He is still very speech delayed, but he does have words. He also has a ton of receptive language and nonverbal expressive language. He is really "with it". I would also like to see him initiate affection. While it does happen from time to time, I know he has more where that came from. I would also like to get on top of pandas 100% (this has just exploded for him in the past 6 months). If the LDN does not do miracles for him, I will be pursuing IVIG for him as well...

 

Well, I hope that my story brightens someone's day! We sure are smiling and taking a deep breath around here!

 

Stephanie

 

What a ride it has been for your boys and for your family! How thankful you must be to see the improvements you are seeing. Keep up the good fight and continue to keep us all posted!