New here...

[ForyouCG]

Hi, I'm new here and I hope I can get some support and great advice. My son was recently diagnosed with PANDAS just 4 days ago. It's been really heartbreaking for us all especially seeing what my son is going through. My son is also challenged with autism. He's been hospitalized twice in the past two months for an exacerbation of debilitating vocal/motor tics following and during a strep infection. One day I had a functioning autistic child and the next day he was completely different (mood changes, OCD, debilitating vocal/motor tics, seperation anxiety, loss of writing skills, regression, severe sensory issues). As if autism wasn't enough, life dealt us another hand....PANDAS. My heart is hurting for my son but at the same time I am doing all I can to help him through this. My family is very supportive and they have been there every step of the way. I see now that I am not alone in this journey as I have read several posts. I must say at times it feels like your the only one going through the dark valley and there is no relief. I have learned quite a bit from this forum and I hope one day I too can help others just the same.

God Bless you and your children........

[Doug]

So what does the doc want you to do that said he has PANDAS?

I am sorry that you are having to go through this.

I would call dr.k or have your doc call him.

Tracie

[Fixit]

God Bless you Too!! There is alot to gleen from the board!!!

[EAMom]

Welcome!

 

Have you seen the FAQ thread?

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Is your doc planning on treating the PANDAS appropriately? Is your child currently on antibiotics (which one, what dose, and how long)?

 

Don't forget to get throat cultures on family members to check for assymptomatic carriers.

 

Definitely do consider contacting one of the "big three PANDAS docs": Dr. K., Dr. Latimer, or Dr. Trifiletti.

 

BTW, Dr. K. has treated a couple (few?) of PANDAS kids with IVIG that had been diagnosed as autistic. After the IVIG (for PANDAS) the autism went away. IN other words, these kids weren't autistic with PANDAS...it was ALL pandas. I'll post the webcast that talks about this if I can find it.

[EAMom]

Here it is

http://www.voiceamerica.com/voiceamerica/v....aspx?aid=43934

[saidie10]

Hi, I'm new here and I hope I can get some support and great advice. My son was recently diagnosed with PANDAS just 4 days ago. It's been really heartbreaking for us all especially seeing what my son is going through. My son is also challenged with autism. He's been hospitalized twice in the past two months for an exacerbation of debilitating vocal/motor tics following and during a strep infection. One day I had a functioning autistic child and the next day he was completely different (mood changes, OCD, debilitating vocal/motor tics, seperation anxiety, loss of writing skills, regression, severe sensory issues). As if autism wasn't enough, life dealt us another hand....PANDAS. My heart is hurting for my son but at the same time I am doing all I can to help him through this. My family is very supportive and they have been there every step of the way. I see now that I am not alone in this journey as I have read several posts. I must say at times it feels like your the only one going through the dark valley and there is no relief. I have learned quite a bit from this forum and I hope one day I too can help others just the same.

God Bless you and your children........

 

I truly feel for you. You have come to the right place for friends and comforting words of advice and support. Hope you find the right good treatment for your son and his recovery is quick.

[thereishope]

Welcome. It's hard and overwhelming at first. But try to view today as the beginning of his recovery. You know what you are fighting and, as a parent, you will fight as hard as you can and more.

[ma2ar2rm2]

Hello I'm new here also.. So I thought this might be a good thread to start on..

We were told on April 30 about 3 weeks ago that our 8 year old daughter has PANDAS. her issues are a little OCD,anxiety and the biggest one for her which made me seek the doctors help was sensory issues where everything that touched her had her in major pain.. At 1st her doctor was telling me she needed a child psychiatrists and should get on some meds ASAP.. I didn't know what to think.. I had a perfectly normal child till end of january 2009 when she got sick with mono and at the same time as the mono got strep.. and it seems like right then and there is when things started to change and I just started counting it as her not feeling well, maybe it's the mono I know it could do strange things to people and make them feel really bad.. only it just kept coming and going.. with her.. getting better getting worse... getting much much much worse.. The last week of April 2010 was the worst I have ever seen her.. It scared me out of my mind.. then on the 28th she started running a fever which almost made me feel better because it explained why things got so much worse.. I sort of was thinking "oh ok she is sick that is why the big change" on April 29 the only way I can explain it is a psychotic episode really.. she cried and screamed and tried to rip the cloths off of her body screaming that they were hurting her, they were killing her and she couldn't take it anymore.. She did this though out her whole doctor visit.. and that isn't the reason I took her in.. I took her in because she had a 102 fever and a sore throat and the school when I called in to say she wasn't going to be there told me strep was going around.. I didn't get to see her doctor that day just a NP. it took me and 2 nurses and the NP to hold her down and pry open her mouth to get the strep test... I had never seen her like that... She is my one who would never talk back, do anything wrong.. straight A, very friendly out going child.. to see her acting this way scared me to death..

BUT!!!!!!!!!!!!!!!!!!!

It was because of this that the NP called her doctor right way and he doctor started going over her records and doing reseach and calling psychiatrists and nerologist.. and the next evening on the Friday April 30th he called me and told me he knows what is going on with her.. PANDAS.. he told me it was rare and he has never seen a case but he is 99.9999% sure that is what she has..

She has been on antibiodics since the April 29th.. and we only had one tiny little issue since then on May 6th..

What they have her on is

At the time she had strep I had 2 of my other kids test pos. for it also.. so 3 of the 6 in our family was treated..

I asked the doc if all of us needed to be tested he told me no not if we are not having sore throat, fever and or coughing..

 

All was well she was back to being my happy child and then this past weekend.. my 10 year old who was just treated for strep 3 weeks ago got sick.. high fever sore throat.. and on Monday tested Pos for Strep again. Yesterday with my PANDAS child she was moody, crying at the drop of a hate and afraid to be in a room alone... the big issues with everything touching her hurting was not there.. but these smaller signs were.. Today she has a little red rash on her back around her shoulders and neck.. and on her legs which looks to me like Scarlet fever sort of rash.. but today she is still acting perfectly fine.. no fever no issues with PANDAS..

I don't know what to do.. her doctor is out of town until Monday.. and I don't know if I'm over reacting and it is nothing..

Then I don't know what I should be looking for or what I should do... this is all so new to me and noone has told me what to do if she has been exposed to strep if anything.. and if she does get it again how do they treat it if she is already on the Cefadroxil..

 

Any help or information or thoughts or prayers or anything would be helpful to me right now.. because I'm scared and clueless of what to expect or do..

Thank you for your help.

[peglem]

Hello I'm new here also.. So I thought this might be a good thread to start on..

We were told on April 30 about 3 weeks ago that our 8 year old daughter has PANDAS. her issues are a little OCD,anxiety and the biggest one for her which made me seek the doctors help was sensory issues where everything that touched her had her in major pain.. At 1st her doctor was telling me she needed a child psychiatrists and should get on some meds ASAP.. I didn't know what to think.. I had a perfectly normal child till end of january 2009 when she got sick with mono and at the same time as the mono got strep.. and it seems like right then and there is when things started to change and I just started counting it as her not feeling well, maybe it's the mono I know it could do strange things to people and make them feel really bad.. only it just kept coming and going.. with her.. getting better getting worse... getting much much much worse.. The last week of April 2010 was the worst I have ever seen her.. It scared me out of my mind.. then on the 28th she started running a fever which almost made me feel better because it explained why things got so much worse.. I sort of was thinking "oh ok she is sick that is why the big change" on April 29 the only way I can explain it is a psychotic episode really.. she cried and screamed and tried to rip the cloths off of her body screaming that they were hurting her, they were killing her and she couldn't take it anymore.. She did this though out her whole doctor visit.. and that isn't the reason I took her in.. I took her in because she had a 102 fever and a sore throat and the school when I called in to say she wasn't going to be there told me strep was going around.. I didn't get to see her doctor that day just a NP. it took me and 2 nurses and the NP to hold her down and pry open her mouth to get the strep test... I had never seen her like that... She is my one who would never talk back, do anything wrong.. straight A, very friendly out going child.. to see her acting this way scared me to death..

BUT!!!!!!!!!!!!!!!!!!!

It was because of this that the NP called her doctor right way and he doctor started going over her records and doing reseach and calling psychiatrists and nerologist.. and the next evening on the Friday April 30th he called me and told me he knows what is going on with her.. PANDAS.. he told me it was rare and he has never seen a case but he is 99.9999% sure that is what she has..

She has been on antibiodics since the April 29th.. and we only had one tiny little issue since then on May 6th..

What they have her on is

At the time she had strep I had 2 of my other kids test pos. for it also.. so 3 of the 6 in our family was treated..

I asked the doc if all of us needed to be tested he told me no not if we are not having sore throat, fever and or coughing..

 

All was well she was back to being my happy child and then this past weekend.. my 10 year old who was just treated for strep 3 weeks ago got sick.. high fever sore throat.. and on Monday tested Pos for Strep again. Yesterday with my PANDAS child she was moody, crying at the drop of a hate and afraid to be in a room alone... the big issues with everything touching her hurting was not there.. but these smaller signs were.. Today she has a little red rash on her back around her shoulders and neck.. and on her legs which looks to me like Scarlet fever sort of rash.. but today she is still acting perfectly fine.. no fever no issues with PANDAS..

I don't know what to do.. her doctor is out of town until Monday.. and I don't know if I'm over reacting and it is nothing..

Then I don't know what I should be looking for or what I should do... this is all so new to me and noone has told me what to do if she has been exposed to strep if anything.. and if she does get it again how do they treat it if she is already on the Cefadroxil..

 

Any help or information or thoughts or prayers or anything would be helpful to me right now.. because I'm scared and clueless of what to expect or do..

Thank you for your help.

Is she on a treatment dose of abx or just a maintenance/preventative dose? Unfortunately PANDAS kids frequently get symptoms just from exposure to strep, as it is caused by the antibodies made when strep is encountered by the immune system. In my experience raising the abx dose or switching abx type can sometimes help. Also, you might try ibuprofen.

[Stephanie2]

I'm sorry for your diagnosis. I have two boys, one was considered a borderline kid when it came to autism and the other we think had autism until we intervened (never brought him for a dx but pediatrician was concerned, etc.)

 

Anyway, when I learned that my boys had pandas, I too felt overwhelmed, as if I didn't have enough on my plate! But then I realized that PANDAS is part of what has brought them to the spectrum in the first place and by treating it they each act more neurotypical. Each child is different, but I would say that by treating PANDAS my 5 year old went from an asperger-type child to a child who acts quite normal with his peers. Same type of effects with my 2 year old.

 

I hope that you can get on top of this for your son. You are in a good place with this forum! BTW, do you have a DAN doctor? Ours is very good with PANDAS...

 

Stephanie

Hi, I'm new here and I hope I can get some support and great advice. My son was recently diagnosed with PANDAS just 4 days ago. It's been really heartbreaking for us all especially seeing what my son is going through. My son is also challenged with autism. He's been hospitalized twice in the past two months for an exacerbation of debilitating vocal/motor tics following and during a strep infection. One day I had a functioning autistic child and the next day he was completely different (mood changes, OCD, debilitating vocal/motor tics, seperation anxiety, loss of writing skills, regression, severe sensory issues). As if autism wasn't enough, life dealt us another hand....PANDAS. My heart is hurting for my son but at the same time I am doing all I can to help him through this. My family is very supportive and they have been there every step of the way. I see now that I am not alone in this journey as I have read several posts. I must say at times it feels like your the only one going through the dark valley and there is no relief. I have learned quite a bit from this forum and I hope one day I too can help others just the same.

God Bless you and your children........

[ma2ar2rm2]

Thank you for your help.

Is she on a treatment dose of abx or just a maintenance/preventative dose? Unfortunately PANDAS kids frequently get symptoms just from exposure to strep, as it is caused by the antibodies made when strep is encountered by the immune system. In my experience raising the abx dose or switching abx type can sometimes help. Also, you might try ibuprofen.

 

I'm not 100% sure she started out with 2 teaspoons twice a day of Amoxicillin 400MG.. But had a reaction to it a rash all over her body this on on April 30th after having 3 doses of it.. That is when they changed her over to Cefadroxil.. she was on 1 1/4 teaspoon but I don't know what the MG was on that.. After that they gave her a perscription that she is on now of cefadroxil 1 1/2 teaspoon 250 MG

I do not know if that is treatment dose or maintenace dose??? I'm going to go look and see if I have any children Ibuprofen right now.. I normally have some on hand since I have 4 kids.. but I'm not 100% sure.. what exactly does that do for them??

[ma2ar2rm2]

Thank you for your help.

Is she on a treatment dose of abx or just a maintenance/preventative dose? Unfortunately PANDAS kids frequently get symptoms just from exposure to strep, as it is caused by the antibodies made when strep is encountered by the immune system. In my experience raising the abx dose or switching abx type can sometimes help. Also, you might try ibuprofen.

 

I'm not 100% sure she started out with 2 teaspoons twice a day of Amoxicillin 400MG.. But had a reaction to it a rash all over her body this on on April 30th after having 3 doses of it.. That is when they changed her over to Cefadroxil.. she was on 1 1/4 teaspoon but I don't know what the MG was on that.. After that they gave her a perscription that she is on now of cefadroxil 1 1/2 teaspoon 250 MG

I do not know if that is treatment dose or maintenace dose??? I'm going to go look and see if I have any children Ibuprofen right now.. I normally have some on hand since I have 4 kids.. but I'm not 100% sure.. what exactly does that do for them??

 

I'm sorry that was a typo she right now is on 1 1/4 teaspoons twice a day of 250 MG Cefadroxil..

[ForyouCG]

So what does the doc want you to do that said he has PANDAS?

I am sorry that you are having to go through this.

I would call dr.k or have your doc call him.

Tracie

My son's doctor is Dr. Trifiletti from New Jersey. As soon as he was discharged from the hospital, I had an appt to see him the very same day. It was a very long ride as I was in the Bronx but there was no way I was going to miss this appt. to help my son. The doctor diagnosed him and prescribed Biaxin to start with. He is also getting some lab test done tomorrow not only for the PANDAS but also for the autism. My son has several things going on with his immune system so I can understand all the labs. As far as the Biaxin, I have read good things about it but every child reacts differently and I definitely have to givie my son a probiotic for his stomach. So far he does not have an appetite, don't know if it has to do with the antibiotic or PANDAS. This all can be confusing..but I will do what it takes to learn and help him.

[ForyouCG]

God Bless you Too!! There is alot to gleen from the board!!!

Thank you, I'm sure there is and I know I've come to the right place.

[peglem]

Hi, I'm new here and I hope I can get some support and great advice. My son was recently diagnosed with PANDAS just 4 days ago. It's been really heartbreaking for us all especially seeing what my son is going through. My son is also challenged with autism. He's been hospitalized twice in the past two months for an exacerbation of debilitating vocal/motor tics following and during a strep infection. One day I had a functioning autistic child and the next day he was completely different (mood changes, OCD, debilitating vocal/motor tics, seperation anxiety, loss of writing skills, regression, severe sensory issues). As if autism wasn't enough, life dealt us another hand....PANDAS. My heart is hurting for my son but at the same time I am doing all I can to help him through this. My family is very supportive and they have been there every step of the way. I see now that I am not alone in this journey as I have read several posts. I must say at times it feels like your the only one going through the dark valley and there is no relief. I have learned quite a bit from this forum and I hope one day I too can help others just the same.

God Bless you and your children........

 

I wanted to give you this quote from Dr. Kovacevic's (Dr.K) website- webpediatrics.com because this is exactly what I have come to believe about autism, especially when its combined w/ PANDAS:

 

 

What is Autism? Is it a disease, a disorder, or is it only a symptom of a not-yet-specified disease or disorder?

Applying strict scientific standards (McGuire & Troisi's evolution of medical knowledge), current definition of autism and Autistic Spectrum Disorders (ASD) does not meet the acceptable standards for a separate and distinct disease. It is indeed nothing more than a mere symptom or syndrome (group of characteristic symptoms) of a not-yet-defined disease or diseases.

 

While getting the PANDAS under control probably will not "cure" the autism, (because the delayed development still needs to happen), it may very well remove the underlying disease that has impeded development and allow for that development to happen...so maybe finding out about the PANDAS has given your child a better chance of beating autism as well!