Jump to content
ACN Latitudes Forums

Recommended Posts

The PANDAS I was diagnosed with was nothing like the monster that this horribly misunderstood disease (yes, even among us on this very forum) has snowballed into over the years. When I was twelve years old a doctor handed me a paper with a picture of some green & orange bacteria on it. It explained, in brusque 12 point Times New Roman, that when I got Strep I went crazy. It was short, it was sweet, it was simple - a sorry consolation prize for the fact that from the moment that paper was pressed into my hands nothing would ever be simple again.

 

Temporal lobe Epilepsy. Anemia. Narolepsy. Lyme, Bartonella, Babesia, Mycoplasma, Blastocystis Hominis. Celiac's. Previous Long QT Syndrome. Arthritis. MRSA, H1N1, Bronchitis, STREP, Epatein-Barr, HHV6, Rubella. Infection after infection after infection. Immune abnormalities out the wazoo but no name for them all.

 

It's obvious to me that the disease I live with everyday is not the PANDAS I was introduced to all that time ago. We tend to bicker & discuss pretty specific things on this forum. Vaccine shed times, Glutamate involvement, CamKinase tests & doctors with only one letter for names. It's been too long since we've addressed the elephant in the room. What the #### are we dealing with here? Everyone's expeerience seems to be wildly different from the next, so I pose this question ; what exactly is PITAND to you?

Link to post
Share on other sites

I basically agree with PANDAS 16 - except I think she meant to say that some believe lyme can result in immune deficiency (not that lyme can result from immune deficiency - though either case could be argued).

 

I agree that once you have a crummy immune system (whether you are born with it or you acquire it) you are more likely to have long-standing infections that would be benign in folks with typical immune systems. I also agree that PANDAS and PITAND means "an autoimmune disorder whereby autoantibodies attack the brain". For some reason the immune systems of folks with PANDAS/PITAND and other autoimmune disorders do not distinguish "self" cells (eg: basal ganglia cells) from "non - self" cells (eg: Strep).

 

I do not know if all types of infection can cause the body to make the autoantibodies originally, but our immune systems have memory B cells that allow the immune system to make new antibodies when it sees a familiar invader, so it is possible (I think) that strep is the original antigen that causes the body to produce these antibodies, and then any subsequent infection or inflammation results in a breach in the blood-brain barrier, allowing antibodies to get close to the basal gangila, where these autoantibodies think the basal ganglia is strep and go into attack mode.

 

I think many of the diseases you listed could trigger a PANDAS reaction due to generalized inflammation. I also think that once the body has a faulty system for recognizing "self" from "non-self" it is likely that you will see the same problem in other structures such as the heart (Rheumatic fever), the joints (Rheumatoid Arthritis), the thyroid (Hashimoto) and the GI tract (Crohn's).

Link to post
Share on other sites

 

I will share with you what my dd, 11, said to Dr L yesterday about what living with it is like for her. She said, much more articulately and beautifully than I'll be able to recall (we were rapt and moved as she spoke about it), that for her living with her PANDAS is like being a sheet of glass that is shattered all the way through but still somehow managing to hold its form. Every flare up, every new OCD issue, sensory dysregulation, fear, tic, discomfort, mood swing, etc. threatens to be that last bit of pressure that'll cause her to finally/fully burst.

 

TH

 

Wow - that is poetic, poignant, and haunting. I'm writing that one down. Your dd won't sue me for plagiarism, will she? ;)

Link to post
Share on other sites

What we're dealing with is incredibly disregulated immune systems, and immune systems are incredibly complicated in and of themselves. The doctors are 1 step ahead of us, trying to figure this out as they go. There is no handbook, no map. We have been at this for 4 years now. Whole months go by in a blur of (for me) caregiving, putting one foot in front of the other, seeing another specialist, making endless arrangements and trying new therapies, new medications. In my job, I work with people who have MS and it feels very similar to what they go through-some of them maintain their functioning, some of them get worse. Every day is an unknown. My son is in an acute stage and housebound for the last 3 months- we have a handful of diagnoses that we are dealing with, PANDAS, possibly PITAND, Immune Deficiency, ADD, Learning disabled. The symptoms he has affect every bodily system-the behavioral stuff is a small part of his overall picture. He is suspect for Lyme or Mycoplasma. On and on it goes.

 

I know he will live with this for the rest of his life. It would be nice if someday there's a cure for him and he can resume a "typical" life, but I don't count on it happening anymore. At this point we are still reaching for all the medical help we can get, but quietly planning a life that will include chronic illness and finding a way to create the best possible experience for him. He has been ill with various things for most of his life, and he is only 16. He has had months and even 2 years when he was relatively free from sickness, but those times have been the exception rather than the rule. Before antibiotics and immune modulating treatments he would have probably died, so I am grateful for him to be with us and share the life that he has with us.

 

Sometimes I feel that he suffers too much, and that is the hardest part-helping him to see his life as worthwhile in the midst of all the suffering, helping him to see the bright spots and helping him feel loved and connected to life.

Link to post
Share on other sites

I can barely type because my eyes are filled up and about to spill over....

 

I wish I could gather you all in one room for my 13 year old son to hear these experiences.

 

His self-esteem has suffered immensely from all of his illnesses. We just uncovered them a few months ago. Until then he has been labeled with Asperger's, Autism Spectrum Disorder, OCD, Anxiety Disorder, Post-Traumatic Stress Disorder, Sensory Integration Dysfuction, Behvavioral Disorder.

 

He has been placed in 4 different schools in 4 years. We have given up and decided to homeschool to help keep what's left of his mind and self-esteem in-tact.

 

In some ways, I am relieved to know that there are actual antigens causing his developmental delays and psychological symptoms. I have blamed myself for years.

 

In other ways, I am not sure it is as easy to accept his issues and move on. Now I want to fix him.

 

Ugh.

 

Emerson, I have read many of your posts over the past few months (I am fairly new to the forum). You are very insightful. Thank you for asking the questions for us to ponder.

Link to post
Share on other sites

What we're dealing with is incredibly disregulated immune systems, and immune systems are incredibly complicated in and of themselves. The doctors are 1 step ahead of us, trying to figure this out as they go. There is no handbook, no map. We have been at this for 4 years now. Whole months go by in a blur of (for me) caregiving, putting one foot in front of the other, seeing another specialist, making endless arrangements and trying new therapies, new medications. In my job, I work with people who have MS and it feels very similar to what they go through-some of them maintain their functioning, some of them get worse. Every day is an unknown. My son is in an acute stage and housebound for the last 3 months- we have a handful of diagnoses that we are dealing with, PANDAS, possibly PITAND, Immune Deficiency, ADD, Learning disabled. The symptoms he has affect every bodily system-the behavioral stuff is a small part of his overall picture. He is suspect for Lyme or Mycoplasma. On and on it goes.

 

I know he will live with this for the rest of his life. It would be nice if someday there's a cure for him and he can resume a "typical" life, but I don't count on it happening anymore. At this point we are still reaching for all the medical help we can get, but quietly planning a life that will include chronic illness and finding a way to create the best possible experience for him. He has been ill with various things for most of his life, and he is only 16. He has had months and even 2 years when he was relatively free from sickness, but those times have been the exception rather than the rule. Before antibiotics and immune modulating treatments he would have probably died, so I am grateful for him to be with us and share the life that he has with us.

 

Sometimes I feel that he suffers too much, and that is the hardest part-helping him to see his life as worthwhile in the midst of all the suffering, helping him to see the bright spots and helping him feel loved and connected to life.

 

 

If you know your son has PANDAS/PITAND, simply work on the infection and then follow it with immunomodulatory treatment. There's no reason to plan a life of chronic illness. It's very much possible to live a normal life with this disease. You just have to fight for it. Do you see a PANDAS specialist? Are they willing to help?

 

 

Yes, that's what we've been doing. He has been sick for 4 years, maybe he will get better, and maybe he will continue to struggle with good days and bad. I believe we are missing pieces of his puzzle and will continue to aggressively seek treatment. I think he has multiple issues and infections-he has immune deficiency as well as PANDAS, and maybe Lyme as well. He has the OCD/Pandas stuff but he is dealing with a lot of other things as well, like Emerson and others on the list. If treatment were that easy wouldn't all the kids be better by now? Some respond quickly, and some don't.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...