I'm NEW, NEED HELP!

[BethM33]

Thank to my friend Vickie for pointing me toward this website!

I'll try to sum it up as fast as I can... I just need help figuring out what's going on with my son....

 

My husband and I have a son, Peyton, who in 2007 (when he was 3) was diagnosed with PANDAS syndrome. I had never heard of this before! He had recurrent strep, etc. and then began making strange facial gestures, eye movements, etc.\

His dr. sent him to a ped. neuro who determined he has PANDAS.

Well, we have read alot since then, about this disorder.

We know that the tics can come and go, etc., but Peyton's tics change every time they return. It's never the same tic twice.

I have read that this can be tourettes?? I'm starting to wonder now, if he has PANDAS or TS???

The last month, Peyton's been looking to the side with just his eyes, as far he can, then he shuts his eyes and jerks his head a little.

It started off as just looking to the side when telling me things, but then it moved to the head jerking and as of yesterday, he is now shaking his shoulder and arms as if he had a chill, while he looks to the side.

I have taken him to the dr. to get checked for Strep and Flu, etc, because I know his tics get worse when he has an underlying illness. They said he was 100% fine!

So my question is, WHY the increase in the tic and why is it getting worse and worse???

Usually his tics last a few days or weeks, then are gone for a few weeks or even months, then they come back either by him making noises or doing gestures. This tic, however, has stuck around and just progressively becomes more involved.

I've called his dr. over and over and they sent all of his papers to the top ped. neuro. in our state (the one who diagnosed him 2 years ago), but they said the neuro. cannot see him until APRIL!!!

I can't possibly wait that long.

Can someone give me any idea what might be going on with Peyton???

I will say this.... He is 100% perfect social wise. He engages people when you speak to him, he is funny and sweet and incredibly smart. Has lots of friends, is very social and loving and caring and very interested in the entire world around him.

On the flip side...

He does have some OCD tendencies in that he can get into a pattern of things and stay that way, but it's not severe.

Also, when he has fits, it is IMPOSSIBLE to reason with him or get him to stop crying or doing whatever he's doing, cause once his mind is made up, there is no stopping him. Usually he has to just go to his room and cry it all out, then he's fine. When he was much younger, I noticed that his "tantrums" seemed WAY more difficult than what our older son ever had. Peyton was always more difficult to get through to and more difficult to distract and get him to stop crying, etc.

We would have to just basically wait it out as NO reasoning was going to stop him.

As he is now 5, he does cry A LOT when he's upset, when he doesn't get his way, etc., but he is a little easier to deal with, the older he ges.

Is this part of PANDAS???

ANY advice from y'all would be greatly appreciated!

Meanwhile, we're still going around and around trying to get a Neuro. Dr. to see him NOW!!!

***sigh***

[Chemar]

Hi Beth

 

I moved your thread to our PANDAS forum as you had posted it on the Autism board

 

The parents here are at the forefront of the info on PANDAS so I hope you will get much support and info to help your child

 

all the best

[peglem]

Thank to my friend Vickie for pointing me toward this website!

I'll try to sum it up as fast as I can... I just need help figuring out what's going on with my son....

 

My husband and I have a son, Peyton, who in 2007 (when he was 3) was diagnosed with PANDAS syndrome. I had never heard of this before! He had recurrent strep, etc. and then began making strange facial gestures, eye movements, etc.\

His dr. sent him to a ped. neuro who determined he has PANDAS.

Well, we have read alot since then, about this disorder.

We know that the tics can come and go, etc., but Peyton's tics change every time they return. It's never the same tic twice.

I have read that this can be tourettes?? I'm starting to wonder now, if he has PANDAS or TS???

The last month, Peyton's been looking to the side with just his eyes, as far he can, then he shuts his eyes and jerks his head a little.

It started off as just looking to the side when telling me things, but then it moved to the head jerking and as of yesterday, he is now shaking his shoulder and arms as if he had a chill, while he looks to the side.

I have taken him to the dr. to get checked for Strep and Flu, etc, because I know his tics get worse when he has an underlying illness. They said he was 100% fine!

So my question is, WHY the increase in the tic and why is it getting worse and worse???

Usually his tics last a few days or weeks, then are gone for a few weeks or even months, then they come back either by him making noises or doing gestures. This tic, however, has stuck around and just progressively becomes more involved.

I've called his dr. over and over and they sent all of his papers to the top ped. neuro. in our state (the one who diagnosed him 2 years ago), but they said the neuro. cannot see him until APRIL!!!

I can't possibly wait that long.

Can someone give me any idea what might be going on with Peyton???

I will say this.... He is 100% perfect social wise. He engages people when you speak to him, he is funny and sweet and incredibly smart. Has lots of friends, is very social and loving and caring and very interested in the entire world around him.

On the flip side...

He does have some OCD tendencies in that he can get into a pattern of things and stay that way, but it's not severe.

Also, when he has fits, it is IMPOSSIBLE to reason with him or get him to stop crying or doing whatever he's doing, cause once his mind is made up, there is no stopping him. Usually he has to just go to his room and cry it all out, then he's fine. When he was much younger, I noticed that his "tantrums" seemed WAY more difficult than what our older son ever had. Peyton was always more difficult to get through to and more difficult to distract and get him to stop crying, etc.

We would have to just basically wait it out as NO reasoning was going to stop him.

As he is now 5, he does cry A LOT when he's upset, when he doesn't get his way, etc., but he is a little easier to deal with, the older he ges.

Is this part of PANDAS???

ANY advice from y'all would be greatly appreciated!

Meanwhile, we're still going around and around trying to get a Neuro. Dr. to see him NOW!!!

***sigh***

 

I can't, obviously, dx your son, but something you could try, if your pediatrician is amenable, would be prednisone. Prednisone supresses the immune system, so if symptoms are reduced with prednisone that would be an indication that they are related to an immune reaction. Some of our kids have flair ups just from being exposed to strepA, so even though he tests neg. for strep it could still be PANDAS.

I find it ironic that you were so easily given the PANDAS dx, when so many of us are begging physicians to check it out for us and finding it so hard to get them to see it or consider it.

[EAMom]

Hey Beth...where do you live? Is your child on long-term anti-biotics for his pandas? Which one and what dose? Here's another thread by someone asking questions... http://www.latitudes.org/forums/index.php?...art=#entry43176 I would give you the same advice that SFmom and I gave that mom.

 

Definitely request a kit from Dr. Cunningham ASAP (the lab closes soon for the holidays)...this will help confirm your diagnosis of PANDAS.

 

BTW, if tics seem to get worse suddenly, I would definitely get your son's throat cultured (do the 72 hr culture if the rapid is neg)...since sometimes pandas kids get strep and their only symptom is tics and/or behavior change (ie no sore throat, no fever). I am also a big proponent of culturing family members to check for carriers. Our younger dd is an assymptomatic strep carrier and our older PANDAS dd definitely reacts when younger dd is positive.

[momofgirls]

Your son has PANDAS as originally diagnosed. There is help and I wouldn't wait till April. could you find a doctor to prescribe antibiotics and not just for 10 days? My daughter who is 40 llbs started 1200mg of augmentin a day six weeks ago. I didn't see any improvement for almost three weeks and now she is 97 % recovered! We are pursing ivig as well. Don't panic, he will be ok you just need a doctor with PANDAS experience.

 

 

 

 

 

Thank to my friend Vickie for pointing me toward this website!

I'll try to sum it up as fast as I can... I just need help figuring out what's going on with my son....

 

My husband and I have a son, Peyton, who in 2007 (when he was 3) was diagnosed with PANDAS syndrome. I had never heard of this before! He had recurrent strep, etc. and then began making strange facial gestures, eye movements, etc.\

His dr. sent him to a ped. neuro who determined he has PANDAS.

Well, we have read alot since then, about this disorder.

We know that the tics can come and go, etc., but Peyton's tics change every time they return. It's never the same tic twice.

I have read that this can be tourettes?? I'm starting to wonder now, if he has PANDAS or TS???

The last month, Peyton's been looking to the side with just his eyes, as far he can, then he shuts his eyes and jerks his head a little.

It started off as just looking to the side when telling me things, but then it moved to the head jerking and as of yesterday, he is now shaking his shoulder and arms as if he had a chill, while he looks to the side.

I have taken him to the dr. to get checked for Strep and Flu, etc, because I know his tics get worse when he has an underlying illness. They said he was 100% fine!

So my question is, WHY the increase in the tic and why is it getting worse and worse???

Usually his tics last a few days or weeks, then are gone for a few weeks or even months, then they come back either by him making noises or doing gestures. This tic, however, has stuck around and just progressively becomes more involved.

I've called his dr. over and over and they sent all of his papers to the top ped. neuro. in our state (the one who diagnosed him 2 years ago), but they said the neuro. cannot see him until APRIL!!!

I can't possibly wait that long.

Can someone give me any idea what might be going on with Peyton???

I will say this.... He is 100% perfect social wise. He engages people when you speak to him, he is funny and sweet and incredibly smart. Has lots of friends, is very social and loving and caring and very interested in the entire world around him.

On the flip side...

He does have some OCD tendencies in that he can get into a pattern of things and stay that way, but it's not severe.

Also, when he has fits, it is IMPOSSIBLE to reason with him or get him to stop crying or doing whatever he's doing, cause once his mind is made up, there is no stopping him. Usually he has to just go to his room and cry it all out, then he's fine. When he was much younger, I noticed that his "tantrums" seemed WAY more difficult than what our older son ever had. Peyton was always more difficult to get through to and more difficult to distract and get him to stop crying, etc.

We would have to just basically wait it out as NO reasoning was going to stop him.

As he is now 5, he does cry A LOT when he's upset, when he doesn't get his way, etc., but he is a little easier to deal with, the older he ges.

Is this part of PANDAS???

ANY advice from y'all would be greatly appreciated!

Meanwhile, we're still going around and around trying to get a Neuro. Dr. to see him NOW!!!

***sigh***

[EAMom]

Your son has PANDAS as originally diagnosed. There is help and I wouldn't wait till April. could you find a doctor to prescribe antibiotics and not just for 10 days? My daughter who is 40 llbs started 1200mg of augmentin a day six weeks ago. I didn't see any improvement for almost three weeks and now she is 97 % recovered! We are pursing ivig as well. Don't panic, he will be ok you just need a doctor with PANDAS experience.

 

Beth...Lots of folks on this forum have good luck with Azith. A 40 pound child should be able to take 250mg/day...you need to try it for at least 1 mo. to see if it is helping. Or, like momofgirls stated, Augmentin is another good choice, but you also need to use pretty good doses (like Saving Sammy). (If you aren't seeing any progress with one antibiotic in a month then I would switch to the other.)

 

SFMom recommended prednisone (steroids)...I'm think she was thinking you were already on antibiotics. Usually we start with antibiotics first...for at least a couple of months. You can also try adding in advil (motrin/ibuprofen)...sometimes that helps as well. Also, if you are going to get labwork done with Dr. Cunningham, definitely try to do that b-4 you do steroids since steroids will affect the results.

 

BTW...be a little careful about neurologists. Apparently the one you saw must believe in pandas (a lot of them don't) but even those that "believe" don't always know how to treat it (thanks to the NIMH webiste and other lousy sources of information). Often they don't believe in long term abs (or they don't use strong enough doses of the stronger abs). Many kids respond to Augmentin or Azith, but not Pen or Amoxcillin. Dose is also important. Many neurologists only believe in treating the symptoms (tics meds, ssri's etc.) and not addressing the actual source of the problem (strep, infections, auto-immune dz) with anti-biotics (and steroids/IVIG/pex if needed.) This is a real problem. You may need to travel outside of the Missisppi area to find someone who is knowledgeable.

[EAMom]

btw...

www.pandasnetwork.org has lots of good info

[BethM33]

Thank you all SO much!

Oh and thank you for moving my post... I didn't know I'd posted on the wrong forum.

 

My pedia. put him on Amox. just for 10 days. It did NOTHING.

But, GOOD NEWS!!

I got a call yesterday that they want to see him for blood work on Monday...after that, the neuro will review it and get him in ASAP.

THANK THE LORD!!!

 

THis site is a HUGE help!

I'm taking all of your advice...thanks SO Much!

[EAMom]

Yeah...Amoxcillin didn't work for us either.

 

Have you seen this? I post it a lot. http://www.entrepreneur.com/tradejournals/.../169459644.html

[BethM33]

Yeah...Amoxcillin didn't work for us either.

 

Have you seen this? I post it a lot. http://www.entrepreneur.com/tradejournals/.../169459644.html

 

 

 

 

WOW! I have not ever seen that! Thank you for passing that on!