Treating PITANDS two years later

[jph]

Two years and six weeks ago my ds (now 8) had a sudden onset of rage/anger/ocd/sensory things following a fever which have developed into what I believe is now Tourette's. I'm not sure if it was PANDAS or PITANDS but believe it was one or the other. If this whole thing began from infection, am I completely off base thinking it can be cured with nutrition? For the past two years I've been exploring allergy avenues/gut issues but have had zero results, though several drs/health care providers still tell me that treating food sensitivities will be the answer. What avenue do I begin to take if there is in fact an infection still causing these issues?

Thank you.

[Missmom]

Just the fact that you can pinpoint to the day when this all began for your son to me indicates sudden onset and pandas/pans.... So many times when our kids are sick now days and we go to the doctor we are sent home with nothing to treat our kids and a diagnosis of "viral". I get so tired of hearing it it makes me want to scream.... Chances are your son did have an infection of some sort and it was just never treated properly. I believe that most most of the time when i hear someone has Tourette's that it was probably an undiagnosed pandas case. Especially with such a sudden onset as you describe. I know that many on this board went years without a diagnosis and I am sure that they are better able to guide you as to how to proceed. I just want to say that there are possibly things that you have not considered beyond nutrition that could still help your son. Unfortunately there is no cut and dry protocol out there that works for everyone but many on here have had success with such things as homeopathy, antibiotics, supplements, ibeuprofin, and detox..... And usually a mixture of these. Others have chosen to go directly to a pandas specialist or the NIMH for big expensive treatments such as ivig or plasma exchange. You should definitely read as much information as you can and decide from here how you would like to proceed. If you care to list your state or country maybe others on here could help you by suggesting a doctor nearby who understands what this is and may be willing to try help.

Good luck

[trubiano]

Two years and six weeks ago my ds (now 8) had a sudden onset of rage/anger/ocd/sensory things following a fever which have developed into what I believe is now Tourette's. I'm not sure if it was PANDAS or PITANDS but believe it was one or the other. If this whole thing began from infection, am I completely off base thinking it can be cured with nutrition? For the past two years I've been exploring allergy avenues/gut issues but have had zero results, though several drs/health care providers still tell me that treating food sensitivities will be the answer. What avenue do I begin to take if there is in fact an infection still causing these issues?

Thank you.

 

 

Hi, My son had all the same issues and antibiotics took them away. Four years later the OCD, tics, anger, etc. started again. We found he had strep growing again with no symptoms and he need a different antibiotic, which has been working for two years now. We have been very lucky and not had to go any other route other than the daily antibiotics and probiotics. Has this been tried for your son?

[EmilyK]

We have always been low sugar, organic, avoid preservatives and food coloring, no high fructose corn syrup, many fresh fruits/veggies, omega and vit D supplements, probiotics. More recently we went completely nonGMO and tried GAPs and have continued with some permanent changes from GAPs. I do believe it helps, but it's no cure for us. I'm grateful for Augmentin.

[jph]

About 6 weeks after the sudden onset of symptoms (ocd, rage, self-harming behavior), ds was given a course of abx for an (unrelated?) sinus infection. The abx caused some of the symptoms to disappear *immediately*. They never came back in full force, but it took many months for the ocd to fade away, and he started doing these "wierd" things. For a while I thought it was sensory things; I was unfamiliar at all with tics/Tourette's. These "wierd" things stayed for the next several years, mostly on, sometimes off, changing in intensity, frequency and what they were. Only this year did someone in my family suggest it might be tics or Tourette's, and when I started looking into them, I realized that's exactly what it is.

I'm in the Chicagoland area. I have seen on here that Dr. Miroslav Kovacevic is nearby, but I'm hesitant to visit as it looks like this dr. is quick to suggest IVIG. Does anyone have experience with this dr.? It's not that I'm against IVIG but I feel like we should start with something less invasive first.

Thank you for your responses! It makes a world of difference to not feel alone in the world with this!

[Fixit]

Dealing with this for ds12 3 1/2 yrs.

other 2 are in remission.(all ticcers as main/sole possibly condition/other possible conditions if counted are so insignificant/to me)

 

But ds has had more than a dozen strep infections with paperwork to prove infection..followed by abx and remission.

 

Per Bonnie G..and amy yasko..and maybe a couple of others...there is a belief that step does something to the gut.

some other domino effect occurs.

 

Recently started a salicylate free diet, with additinal restrictions from the failsafe diet and we have seen improvement.

That is comboed with adding real probablity that kpu is issue, even if only minorly.

 

It is not just gfdf...mind you i do let him have whole wheat a couple days a week..and cheese a couple days a week.

we may go GAps, but we are in a better place than we were a month ago.

 

Also treating high viral load, mycop, lymes.

 

after so many episodes i am sure that strep has done something to his digestive system...that will take a long time to heal, even though as i write this, understanding what i am saying, i am upset daily that today is not the day that it stopped.(sorry to brag but we too used to get full remission with a 10course of abx)

please remind me when i post asking why it's taking so long.(but we are going to heal in a month i am sure )

 

ps when he throws up he doesnt' tic that day/or for the hours he is vomiting..

steroid burst had a nice 3 day subsidance and a taper was like a Christmas present that was taken away

[Kayanne]

Just the fact that you can pinpoint to the day when this all began for your son to me indicates sudden onset and pandas/pans.... So many times when our kids are sick now days and we go to the doctor we are sent home with nothing to treat our kids and a diagnosis of "viral". I get so tired of hearing it it makes me want to scream.... Chances are your son did have an infection of some sort and it was just never treated properly. I believe that most most of the time when i hear someone has Tourette's that it was probably an undiagnosed pandas case. Especially with such a sudden onset as you describe. I know that many on this board went years without a diagnosis and I am sure that they are better able to guide you as to how to proceed. I just want to say that there are possibly things that you have not considered beyond nutrition that could still help your son. Unfortunately there is no cut and dry protocol out there that works for everyone but many on here have had success with such things as homeopathy, antibiotics, supplements, ibeuprofin, and detox..... And usually a mixture of these. Others have chosen to go directly to a pandas specialist or the NIMH for big expensive treatments such as ivig or plasma exchange. You should definitely read as much information as you can and decide from here how you would like to proceed. If you care to list your state or country maybe others on here could help you by suggesting a doctor nearby who understands what this is and may be willing to try help.

Good luck

 

I would just like to point out that going to one of the recognized PANDAS specialists does not mean you are going to get the "big expensive treatments" such as IVIG or plasmapheresis. Going to a recognized PANDAS specialists means that your child will be evaluated by that doctor, with strong consideration of a PANDAS/PANS diagnosis. That doctor will hopefully be able to give a reasonable diagnosis and treatment plan based on an exam, patient history, and if needed ordered tests.

 

Missmom, I know that the jist of what you were saying, is that if a parent feels that a more aggressive treatment plan is needed, you are more likely to get that type of support from one of the doctors who routinely sees and recognized PANDAS/PANS, and I know that you have zero intentions of making this sound bad. However, in a way it does. It marginalizes these doctors and characterizes them as automatically willing to perform these treatments...which is not true.