PANDAS Rages---Help!

[LindaMW]

Hi I am new and my son has not been offically diagnosed with PANDAS/PANS but he displays all the syptoms and I finally found a doctor who was willing to try the antibiotics. I have read so many stories from other parents and I can relate completely. If this is not PANDAS then what is it? It does not make sense.

 

Right now our biggest challange is the rages and not wanting to go to school. How are we supposed to handle this rage and anger when he physically fights with us? We need to get him to his therapy for the OCD and everyday he fights us. This is one reason he is also not in school, that and the anxiety.

 

Why is this so hard for doctors to listen and look at all the symptoms instead of trying to diagnose a behavior problem or just an OCD problem. All of it combined says there is something else. My son was never like this before and never had OCD or dibilating anxiety, look at the whole picture. The doctors have been just as frustrating as what we are going through with our son.

 

Any advice would be greatly appreciated.

Linda

[LindaMW]

Hi I am new and my son has not been offically diagnosed with PANDAS/PANS but he displays all the syptoms and I finally found a doctor who was willing to try the antibiotics. I have read so many stories from other parents and I can relate completely. If this is not PANDAS then what is it? It does not make sense.

 

Right now our biggest challange is the rages and not wanting to go to school. How are we supposed to handle this rage and anger when he physically fights with us? We need to get him to his therapy for the OCD and everyday he fights us. This is one reason he is also not in school, that and the anxiety.

 

Why is this so hard for doctors to listen and look at all the symptoms instead of trying to diagnose a behavior problem or just an OCD problem. All of it combined says there is something else. My son was never like this before and never had OCD or dibilating anxiety, look at the whole picture. The doctors have been just as frustrating as what we are going through with our son.

 

Any advice would be greatly appreciated.

Linda

[LindaMW]

Also wanted to add that when he has these rages, there is no rationalizing with him. It's like his brain completely shuts down and he cannot understand what is happening.

 

Does anyone know if there is a time window on being able to treat this? These syptoms started back in Oct. 2011 after an infection and since then he has not had any other infections. Would the antibiotics really be able to do anything at this point, or is it too late?

 

Thanks,

Linda

[bulldog24]

Have you contacted the nih study by chance?

 

There doesnt need to be a diagnosis. CALL!

I can find the info for you if you need it. My son is in the study.and it has been a life saver. How old is your son? During rages there is not any rationalizing. Basically I just keep him safe. I would use benadryl and motrin. Benadryl just makes him sleepy really. Not ideal but I did what i had to.

 

is your boy on antibiotics?

 

 

Please please call the study

[LindaMW]

My son is 9 year old.

 

I don't know anything about the study. What is that about?

 

It has been hard enough just to get a doctor to look at the idea of PANDAS. That's why we are trying the antibiotics. I just didn't know if it was too late to try that since the infection and symptoms started 5 months ago.

 

I just want him back in school and be able to function normally again. My child was completely fine 5 months ago and changed overnight. It is that whole concept that is so hard to understand.

 

Linda

[Iowadawn]

yes, your son sounds like a candidate for the NIMH/Yale IVIG study. pandasnetwork.org will have the ifo you need.

 

OCD has many different forms & presentations--not just the handwashing compulsion/obsessed with germs example we easily recognize. My son is very much like yours with the explosive rages.

 

Dawn

[peglem]

My son is 9 year old.

 

I don't know anything about the study. What is that about?

 

It has been hard enough just to get a doctor to look at the idea of PANDAS. That's why we are trying the antibiotics. I just didn't know if it was too late to try that since the infection and symptoms started 5 months ago.

 

I just want him back in school and be able to function normally again. My child was completely fine 5 months ago and changed overnight. It is that whole concept that is so hard to understand.

 

Linda

The NIH is doing a study on treating new PANDAS cases. I don't have a link, but I'm sure somebody will post one for you. If you can get into the study, your child will get treatment from professionals who know this disorder better than anyone!

But, I want you to know it is not too late to get successful treatment. Many people on this forum have gone much longer w/o treatment and still had good outcomes. Abx alone may not do the trick- but there are other things to try. It is sometimes very helpful to give ibuprofen (anti-inflammatory) around the clock. Also, for us, prednisone usually will decrease the autoimmune reaction. If you don't do the study, at least find a doctor who knows how to treat this.

[NancyD]

Welcome Linda. I'm sorry you have to be here but you are in good hands with this forum. I don't think it's ever too late! But, I highly recommend that you save yourself a lot of heartache and wasted years and go see one of the top PANDAS experts or an LLMD who treats PANDAS. If only I had access to experts like these years ago!

 

My DD's rages started at age 2 following impetigo. PANDAS was not diagnosed until age 7 and by then her rages were daily (up to 3 hours apiece) and violent. Antibiotics stopped the rages within 48 hours and we had a couple of good years with a few blips in between. But in the prepubescent and teen years it got progressively worse and the good times were few and far between. A change in antibiotics, high doses of vitamin D3 (she had catastrohpically low levels), and IVIg infusions literally saved her life. Although my DD was very complex (severe colitis and moderate ASD when she was young and later diagnosed with Lyme, Bartonella, MycoP, deviant MTHFR gene, KPU, etc.), I don't think we would be anywhere near where we are now without antibiotics. She is 16 now and her cotitis is completely healed, she is no longer on the autism spectrum, her PANDAS has been in remission for 2 years, and we are nearing the end of her Lyme/Bartonella/MycoP treatment. We are still treating her methylation issues and KPU and we still have to treat underlying viral infections (HHV-6), but her rages are a thing of the past. They prevented us from going anywhere for years. It's been two years since her last violent rage. Although we are still trying to get to the route of her anxiety and OCD, we are a far cry from where we were. Life is so much calmer.

 

Try and nip it now with guns blazing before it gets worse. And be sure to rule out other underlying bacterial and viral infections (e.g., Lyme, Bartonella, Babesia, Ehrlicliosis, MycoP, CMV, EBV, HHV-6, etc.) that will prevent PANDAS from going into (or staying in) remission.

 

 

Does anyone know if there is a time window on being able to treat this? These syptoms started back in Oct. 2011 after an infection and since then he has not had any other infections. Would the antibiotics really be able to do anything at this point, or is it too late?

 

Thanks,

Linda

[bulldog24]

here is the link. just call and see where it leads any q's let me know

 

http://pandasnetwork.org/2011/02/yale-nih-details-on-pandas-ivig-clinical-treatment-study/

[bulldog24]

more details

 

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969

[fightingmom]

Try contacting Dr. James Leckmann, he is one of doctors running the study about PANDAS. I had emailed with him a while back and he was extremely kind. Gave me a few names, unfortunately the other docs were a dead-end but he tried. In his email reply back to me, he had stated the following:

 

 

"I am currently working with Sue Swedo on a PANDAS treatment study. Unfortunately, your son is too old to be in our study, otherwise I would put you in touch with the person in charge of the screening process."

 

Try emailing him, he'll get you to the right person.

 

His email is: james.leckman@yale.edu

[LindaMW]

Thank you everyone for all your help and advice.

 

I will review all this with my husband. We both having been reading various articles and information on the PANDAS Network and Inter. OCD websites.

 

I will also continue reading this forum because it has been very helpful and supportive.

 

Linda

[nicklemama]

Linda- There is hope....lots of it. My DS went a full yr w/out treatment or diagnosis and the rages were the worst part. We put him on lamictal to help w/ the rages and it did help, but this was before diagnosis. His anger and irritibility went way down after he had been on treatment dose abx for a while. It takes time for the abx to work. 7 months after diagnosis and starting abx, he had IVIG. Today, he is off lamictal, still on abx and no rages. Anger and irritibility only pop up occasionally, when he is in a flair. It is not too late. Call and see if you can get into the NIH study.

 

Came back to add, you are right, there is NO reasoning w/ a raging child. You just have to let it run its course after it has started.

 

My son had no infections that we knew of, at the time of diagnosis. His PANDAS was missed by a lot of doctors.

Edited March 23, 2012 by nicklemama

[LindaMW]

Thanks for your replay.

 

My most frustrating thing with all this is the doctors do not look at the whole picture. I told them he suddenly changed, and suddenly had OCD and now the rages, anxiety (full blown), even handwriting and sleeping problems. They hear rages, it's a behavorial problem, be more strict. They hear OCD, put him on Prozac and get therapy. They did not once comment on any thing regarding the change in writing or sleep issues, let alone that this all started suddenly, overnight. We have a had a full medical workup done at our children's hospital and we come out of it with a severe anxiety diagonsis. AAAGGGHHH!!! the frustration level is so high, I feel like I have a psychological problem.

 

Sorry, but this is making me nuts. I am sure anyone reading this can also relate. I have read other post and I see some of you have more than one kid with this, it is just so heartbreaking. All the advances in the medical world and they cannot handle streph.

 

I will keep all of you other parents in my prayers and I greatly appreciate all the advice I have been given. I guess we just have to keep trying and never give up our search to help our children.

 

Linda

[3boysmom]

Amen to that. You are in the right place.... Put your gloves on, get tough, and get ready for the fight! We are all right behind you. Most of us HAD the opportunity to NOT be here, but doctors that refussed to listen and believe us caused us to MISS that chance for quick remission. (Remission IS possible, just not as easy the longer it goes on.)

 

Welcome and sorry,

Linda

Edited March 23, 2012 by 3boysmom