PANDAS

[judy1270]

Hi to all! you gave me hope and the will to fight for my grandson. I am still learning to use this site I think I am using the reply correctly I hope so if not please let me know.

 

Now an update on my grandson.

Over the weekend he got really bad he did not sleep for two days. I stayed up with him he was hitting me and throwing things at me and trying to hurt the dog.

At 2:30 that night I called 911 they took him to Kingman Hospital. The doctor had seen Corbin befour and he knew that Corbin had been diagnosis wrong by his pediatric doctor.

So he shot him up with Valium and sent him to Sunrise Children's Hospital in Las Vegas.

They were waiting for us and they had corbins medical records,Dr Scott from Kingman sent them and had asked them to contact a Neurology Specialists.

 

Now for anyone that has not read my post on Corbin this has been going on scene 1-21-08 he went in for a well-check and they gave him a chickenpox booster shot, (That he did not need) he had already had his booster and he had the chickpoxs when he was 3 years old.

 

His shot card had showed that he had one shot and the box that should have been checked that he had the chickenpox was not (checked)

 

And I did not look at the card until it was to late.

 

So the specialist at Sunrise Children's Hospital ran all kinds of tests on Corbin we were there for 22 hours. He came in the room he said I have bad news and good news.

He said good news is there is no tumor. Thank God!

Bad news he has (PANDAS)

 

And I remember someone here had told me that and I can not remember who.

 

The good news the doctor has put him on new meds (CLONIDINE) and (PINICILLIN)

 

Last night was the first dose of the new meds and the tics are gone and he is my little Corbin again.

 

I know we have have a long road ahead of us but I am so thankful for Doctor Johns and Doctor Scott.

 

And all of you that helped me.

Thank you and God Bless all of you.

[bmom]

Thank you for posting as I think it is almost a miracle. My son has been on this road for over a year now. His first explosion came one year and a month ago. I have suspected PANDAS all along, yet have not been sure or able to find a doctor. Little symptoms, but pretty well for the year. Fast forward to this week. I started with a sore throat. I noticed my son ticcing slightly 2 days ago. We both went to emergency to be checked for strep. Mine positive, his negative. Since yesterday he has been ticcing badly. The doctor wont give him meds, I am trying to get him to run the titres test. He doesn't know about PANDAS and even though I have brought him a lot of info, he doesnt really believe in them. Anyway, I live in Nevada, and for the past year I have been looking for a PANDAS specialist in Nevada. As I sat down to the computer tonight, my mind was thinking okay, I need a specialist for PANDAS, preferably in Nevada, but I will travel anywhere. I then clicked on and read your post of the doctor that treated your grandson in Nevada. Could you please tell me his name at Sunrise Hospital as I will be calling there ASAP.. Thank you and I am glad your Corbin is doing well. I am thinking that sometimes we are sent to the place we need to be. Oh, I just saw that you did have his name. Is it Doctor Johns and Doctor Scott at Sunrise? Thank you sooooo much. I will be calling there tomorrow.

Also, can you tell me if Corbin has been put on Penicillin profolacticly (not sure how to spell that sorry)? or is he just on it for a short time? Also, do you know if he ran the strep antibodies test (titer levels) and if yes, was he out of the normal range?

[michele]

Judy, you were so lucky to find a neuro Dr. who would treat and diagnose as PANDAS. How strange about the chicken pox vaccine. Our DAN said children who have too many vaccines often get autism like symptoms. My son also got his first PANDAS /strep attack after the chicken pox vaccine. It is a live virus they give them. Did your grandson have any neurological problems prior to this round of shots? Unbelievable for your family. Make sure you document everything. My son is being treated similar to your grandson. My cousin's son was on clonidine for his tics. She said it worked well while his tics were bad. We are taking 1 mg Abilify which helps with tics and attention and emotional issues. I pray they will both get better soon. I know on this site they promote natural treatments however, when these kids get worse instead of better with the natural supplements then it is time to try something else. Especially with the PANDAS. The damage that each episode brings changes who they are.

 

Thanks for sharing your experience,

Michele

 

Hi to all! you gave me hope and the will to fight for my grandson. I am still learning to use this site I think I am using the reply correctly I hope so if not please let me know.

 

Now an update on my grandson.

Over the weekend he got really bad he did not sleep for two days. I stayed up with him he was hitting me and throwing things at me and trying to hurt the dog.

At 2:30 that night I called 911 they took him to Kingman Hospital. The doctor had seen Corbin befour and he knew that Corbin had been diagnosis wrong by his pediatric doctor.

So he shot him up with Valium and sent him to Sunrise Children's Hospital in Las Vegas.

They were waiting for us and they had corbins medical records,Dr Scott from Kingman sent them and had asked them to contact a Neurology Specialists.

 

Now for anyone that has not read my post on Corbin this has been going on scene 1-21-08 he went in for a well-check and they gave him a chickenpox booster shot, (That he did not need) he had already had his booster and he had the chickpoxs when he was 3 years old.

 

His shot card had showed that he had one shot and the box that should have been checked that he had the chickenpox was not (checked)

 

And I did not look at the card until it was to late.

 

So the specialist at Sunrise Children's Hospital ran all kinds of tests on Corbin we were there for 22 hours. He came in the room he said I have bad news and good news.

He said good news is there is no tumor. Thank God!

Bad news he has (PANDAS)

 

And I remember someone here had told me that and I can not remember who.

 

The good news the doctor has put him on new meds (CLONIDINE) and (PINICILLIN)

 

Last night was the first dose of the new meds and the tics are gone and he is my little Corbin again.

 

I know we have have a long road ahead of us but I am so thankful for Doctor Johns and Doctor Scott.

 

And all of you that helped me.

Thank you and God Bless all of you.

[Chemar]

hello Judy

 

tho I am sorry you are having to deal with PANDAS, yet at least having an accurate dx means proper treatment

 

I thought long and hard before posting this reply, but I do want to just sound a note of caution re clonidine...please be very very watchful for side effects from this drug. I hope your little one will not exhibit these, but I have personal experience of someone becoming severely psychotic on clonidine, a reaction that immediately stopped once the clonidine was withdrawn. This is not in any way suggesting that this will happen for your grandson....but I feel I would be wrong not to mention it as an FYI

 

My own son had bad reactions to haldol/luvox/zyprexa, and I sure wish I had known before about the very real potential for these, as I would have been more watchful, and would also have recognized the side effects more clearly when the docs that were then treating him attributed them to his condition, and never once mentioned that it could be the meds themselves causing the problems. Even the documented side effects sometimes dont give an accurate warning IMHO

 

I hope your lil guy just keeps getting better and better and that he will have only good responses to the treatment

 

all the best

Cheri

[kkver]

Judy

 

I am glad the doctor found PANDAS. Only thing is if it is if it is PANDAS why he was started both the medications. CLONIDINE is low blood pressure medication but is also used to control TS but have side effects. As chemar said you should keep a eye on it . If it was only antibiotic ( may be stronger then penn) then it makes more sense .

Hope he feels better soon.

[judy1270]

Judy, you were so lucky to find a neuro Dr. who would treat and diagnose as PANDAS. How strange about the chicken pox vaccine. Our DAN said children who have too many vaccines often get autism like symptoms. My son also got his first PANDAS /strep attack after the chicken pox vaccine. It is a live virus they give them. Did your grandson have any neurological problems prior to this round of shots? Unbelievable for your family. Make sure you document everything. My son is being treated similar to your grandson. My cousin's son was on clonidine for his tics. She said it worked well while his tics were bad. We are taking 1 mg Abilify which helps with tics and attention and emotional issues. I pray they will both get better soon. I know on this site they promote natural treatments however, when these kids get worse instead of better with the natural supplements then it is time to try something else. Especially with the PANDAS. The damage that each episode brings changes who they are.

 

Thanks for sharing your experience,

Michele

 

Hi to all! you gave me hope and the will to fight for my grandson. I am still learning to use this site I think I am using the reply correctly I hope so if not please let me know.

 

Now an update on my grandson.

Over the weekend he got really bad he did not sleep for two days. I stayed up with him he was hitting me and throwing things at me and trying to hurt the dog.

At 2:30 that night I called 911 they took him to Kingman Hospital. The doctor had seen Corbin befour and he knew that Corbin had been diagnosis wrong by his pediatric doctor.

So he shot him up with Valium and sent him to Sunrise Children's Hospital in Las Vegas.

They were waiting for us and they had corbins medical records,Dr Scott from Kingman sent them and had asked them to contact a Neurology Specialists.

 

Now for anyone that has not read my post on Corbin this has been going on scene 1-21-08 he went in for a well-check and they gave him a chickenpox booster shot, (That he did not need) he had already had his booster and he had the chickpoxs when he was 3 years old.

 

His shot card had showed that he had one shot and the box that should have been checked that he had the chickenpox was not (checked)

 

And I did not look at the card until it was to late.

 

So the specialist at Sunrise Children's Hospital ran all kinds of tests on Corbin we were there for 22 hours. He came in the room he said I have bad news and good news.

He said good news is there is no tumor. Thank God!

Bad news he has (PANDAS)

 

And I remember someone here had told me that and I can not remember who.

 

The good news the doctor has put him on new meds (CLONIDINE) and (PINICILLIN)

 

Last night was the first dose of the new meds and the tics are gone and he is my little Corbin again.

 

I know we have have a long road ahead of us but I am so thankful for Doctor Johns and Doctor Scott.

 

And all of you that helped me.

Thank you and God Bless all of you.

 

Hi Michele,

 

Corbin has never had neurological problems he went in for a well-check and they gave him the booster shot (chickenpox) that he did not need he had 2 shots one when he was 3moths old and one when he was 4 years old and he had the chickenpox when he was 2 1/2 years old it was a mild case.

He got the shot on 1-21-08 he ran a fever of a 104.8 and for a week after that he ran a fever of 102.

The jerking started the next day after the shot.

The seizure happen on 2-7-08.

He was running a fever when they gave him the shot of 101.1 we asked if that would hurt him, and they said no.

He had been telling his neck hurt for over a month before I took him in for a well-check.

Now I know he was trying to say his throat hurt. He had a sore throat and did not know how to tell me.

[judy1270]

hello Judy

 

tho I am sorry you are having to deal with PANDAS, yet at least having an accurate dx means proper treatment

 

I thought long and hard before posting this reply, but I do want to just sound a note of caution re clonidine...please be very very watchful for side effects from this drug. I hope your little one will not exhibit these, but I have personal experience of someone becoming severely psychotic on clonidine, a reaction that immediately stopped once the clonidine was withdrawn. This is not in any way suggesting that this will happen for your grandson....but I feel I would be wrong not to mention it as an FYI

 

My own son had bad reactions to haldol/luvox/zyprexa, and I sure wish I had known before about the very real potential for these, as I would have been more watchful, and would also have recognized the side effects more clearly when the docs that were then treating him attributed them to his condition, and never once mentioned that it could be the meds themselves causing the problems. Even the documented side effects sometimes dont give an accurate warning IMHO

 

I hope your Lil guy just keeps getting better and better and that he will have only good responses to the treatment

 

all the best

Cheri

 

 

Good Morning Cheri,

Now I remember it was you that told me it was PANDAS, thank you so much for your info on this.

I don't know all the side effects to this medication now I am a little worried.

What should I be looking for????

He goes back to see Dr Johns in two weeks.

I am keeping a journal on Corbin I take his temp avey hour and a 1-2 and any thing that is out of the odnery,I have changed his diet he gets no sugar and I give him epson salt bath at night, that helps a lot.

[kim]

Judy,

 

This is what possibly happened to your sweetie,

 

Firstly, they don't have to be accurate with those vaccines, because they seem to believe that they are as harmless as candy. Well, neither are harmless given to the wrong person at the wrong time. They just recommended my son get another chicken pox shot, due to a mistake in his record too. The state flagged him and school sent a letter that he needed it. I knew it was recommended at this point, but not mandated (the 2nd shot). I called the health dept. They said his record showed he got the MMR on one day and the chicken pox the next. You can't do it that way. They have to be given on the same day, or it's not considered effective. I believe it was given on the same day too, but they recorded it wrong at the office (can't say this for sure). If the MMR and the chicken pox shot aren't given on the same day, your immune system is tied up with the MMR and won't develop the supposed immunity to the varicella if given the next day. I can't remember exactly how far apart they have to be, if not given on the same day, at the moment.

When they do their "studies" on vaccines, this is what they look at. How much antibody did you develope, that's what they go by, period. (oh yea, if you don't go into cardiac arrest on the spot...there are no adverse events, if you do, give bendryl). Any other adverse events during their short "follow up" can never really be tied to the vaccine anyway, so they are ALL perfectly safe with the exception a tinnnnney weeeeenie %. The dire disease is by FAR worse than the odds that you will be in that teeeeeeie %. This is what we HAVE to be made to believe in order for this whole program to continue to be hugly profitable.

 

Strep can use cells in our own bodies immune system to hide out. These cells are phagocytes and macrophage. The strep can be found intercellular in some instances. The immune system won't detect it. Titers will not be elevated (i need to double check that last remark). It's hiding and waiting until the immune system is tied up doing something else. It may be affecting the ability of these scavenger cells to do the job they were intended to do (this is my comment, I have no link to back that, but could probably come up with one). This is apparently being found to be the case with the AIDS virus too. It's present in these cells (that are designed to function in our primary immune response, the innate arm of the immune system) It spreads thru these cells to different parts of the body, but it doesn't cause mass destruction until some events come together where it strikes and full blown AIDS becomes evident.

 

I don't know your grandson's history with strep. There are many factors to consider here. The above scenerio may apply to a child with more of a history of PANDAS symptoms. Was the strep a result of Corbins immune system reacting to chicken pox (which he should have more than enough antibodies to be protective at the point that he got that vax, so why the reaction?) I'm just not convinced that this is a PANDAS situation. Yes, he has strep and may have had it at the time of the vax, OR he could have been more vulnerable to a strep infection because of what was happening with his immune system from what was going on from that vaccine. I would insist on a viral panel. You are in a prime postition to demand whatever you want at this point. Please, please make sure that reaction is reported to VAERS. Tell your Dr. that you want it reported, and ask for a copy!

[Caryn]

Judy,

Please have a food intolerance panel done. I can't stress this enough, especially since your grandson has been diagnosed with Lupus, which is statistically shown to be caused by gluten sensitive enteropathy/celiac disease. Something caused his immune system to weaken, prior to the vaccine. If his food is not digestible because he doesn't have proper enzyme capabilities, then it is creating antibodies in his blood.

Antibiotics will not cure a food intolerance.

[kim]

Judy,

 

Whoa! I just noticed that you said Corbin had a varicella shot at 3 mos.!? Are you sure about that?

 

I sent a reply, that's right above Caryn's too.

[P_Mom]

In a PANDAS situation, any immune challenge can set of symptoms. I spoke to a Mom who had a daughter in the study at the NIMH with Susan Swedo in the late 90's. She told me that Susan Swedo stated that there are many viruses/bacterias that are very similiar to strep in their molecular make up or structure, and can cause symptoms just like with strep...Chicken Pox (varicella) being one particular one she mentioned.

 

Kelly

[P_Mom]

One more interesting I'd like to share about Chicken Pox that we experienced ourselves. After my younger sons initial explosive onset of everything this past summer after strep...he slowly improved over months until basically nothing remained. He had his titers run (too late) while he was well and they had come back to normal. He continued to do well and then started with a decent increase of symptoms..the biggest increase of symptoms so far since strep. We could not figure out what was happeneing..no one was sick, so we thought..and I started to look into everything else driving myself crazy...why would a PANDAS kid have this kind of increase without illness??? It wasn't until a few days later I noticed the bumps on his torso.. there were less than a dozen, but, definitely there, he showed no other symptoms other than this rash..I knew he had something viral and therefore had my cause for the increase. Well, less than a week later..we received a note from his playschool that Chicken Pox was contracted and going around in his class. I have no doubt that he contracted Chicken Pox and it was mild because he had the Varicella vaccine when he was one. Here is the interesting part..we had his strep titers ran again after this increase and they had risen, so, the strep titers rose in my PANDAS son's case even though what he had was Chicken Pox, not strep, and this rise = increased symptoms.

 

Kelly

[P_Mom]

I also find it interesting..and really not coincidental...that even in Caryn's situation..it was the Chicken Pox vaccine that STARTED it all for her and her son. The Chicken Pox vaccine and/or chicken pox itself, is a huge instigator and a no no in a PANDAS situation.

[Lotusgirl71]

I also find it interesting..and really not coincidental...that even in Caryn's situation..it was the Chicken Pox vaccine that STARTED it all for her and her son. The Chicken Pox vaccine and/or chicken pox itself, is a huge instigator and a no no in a PANDAS situation.

 

I am new to the board and wanted to respond to this .. My son dx with PANDAS in 06 - got Chicken pox's this summer 1 week before school was to begin. He had the pox but no increased itchiness etc.... what was interesting was - since then - he got the 2nd pox vaccine and his behavior - PANDAS has gotten worse - NOT ALL of them but a lot of them. He has been testing negative for strep but I know a round of antibiotics would show a marked improved difference but they won't do it - I have asked to have his titers checked again - they won't do it - I just called again and this time I will push to have it - it is covered and it won't hurt to try it ..

but I am interested in the Chicken Pox / PANDAS connection ...

[Caryn]

I also find it interesting..and really not coincidental...that even in Caryn's situation..it was the Chicken Pox vaccine that STARTED it all for her and her son. The Chicken Pox vaccine and/or chicken pox itself, is a huge instigator and a no no in a PANDAS situation.

We do not consider ourselves a PANDAS case. I just want to point that out. Yes he had the chicken pox vax along with the Hep B vax about six weeks before we saw behavioral problems at school. Within three months we saw our first sniffing tic, and then an eruption of tics over the holidays that never waned until we went gluten free. I need to clarify this fact because I feel that every person signing on to this board lately is heading directly toward a PANDAS diagnosis without considering that there could be a multitude of reasons for the rise in symptoms and onset of the condition. I'm sorry, but not strep titers in my mind means no PANDAS. Let's not forget that this is a clinical diagnosis. A doctor's best guess at that. The antibiotics work in many cases. Yes, that is obvious. Why do. they work? Why aren't we asking that question? Why are these kids getting neurological complications when being subjected to normal childhood illnesses? What is it about their IMMUNE SYSTEM in general that is causing the outburst and breaking down their little bodies?

This is why I can't stress it enough.

Look at the food you are feeding your child, the toxic soaps and lotions they are lathering on their bodies, the fact that genetically speaking 10% of the population cannot eat wheat because they are celiac. Upwards to 30% are in someway intolerant. Enter the GMO food factor here, the high sugar diet, the MSG issue, etc....

Ugh.

I just am exhausted trying to explain myself.

We are not PANDAS. Our child is functioning normally and has no symptoms since after Christmas. We eat according to his gluten and corn free needs. We have never used antibiotics to treat our son. We quite certainly may have gone down that road, we almost did. His titers came back normal and his blood work showed he had been fighting an infection.

Let food be your medicine.

Candida is an evil thing to have growing in the body.

Constant use of antibiotics will not kill candida