new diagnosis or new illness

[smartyjones]

In that other interview of Beth Maloney she said something like "the research is so new".

 

It got me thinking - do the dr's who are involved in research/treating hypothesize that PANDAS is a new diagnosis and newly discovered link for strep to the behaviors - kids have always been affected just treated as OCD, tics, etc. - or do they believe it to be a new illness from a mutated strain of strep or new immune system malfunction?

 

I guess it doesn't matter in treatment but it just got me wondering on a broader infectious disease front. Does anyone know?

[thereishope]

In my opinion, I think it has always existed. The relationship has just been realized. That's sad when you think how many have suffered.

[bronxmom2]

I had it. I'm quite certain of it. I had lots of strep, then at age 6-7 I developed a vocal tic and irrational feelings of guilt. I suffered through my whole adolescence and young adulthood from an inexplicable emotional pain and was hospitalized several times around age 18 because I was suicidal. I also self-injured. I was suicidal through my twenties, but I resisted all the diagnoses that came my way because they did not quite make sense to me. I also refused psychiatric medication because of a gut instinct that it would do not good. I now realize the obsession with suicide-- could not shake the suicidal thoughts-- was OCD. Anyway pregnancy seem to cure me of all my emotional problems.

 

I am suffering now, but it's from watching my son suffer.

 

Or is it? For the last few years, while this thing has ravaged my son, I've gotten sicker and sicker myself. Chronic sinus infections (I have one now)... which debilitate me emotionally (I've read about the link between sinus and depression) I find myself wondering if this resistant streptococcus pneumonai we've been discussing, which seems to have taken root in my son, has taken root in me again as well.

[Suzan]

I had it. I'm quite certain of it. I had lots of strep, then at age 6-7 I developed a vocal tic and irrational feelings of guilt. I suffered through my whole adolescence and young adulthood from an inexplicable emotional pain and was hospitalized several times around age 18 because I was suicidal. I also self-injured. I was suicidal through my twenties, but I resisted all the diagnoses that came my way because they did not quite make sense to me. I also refused psychiatric medication because of a gut instinct that it would do not good. I now realize the obsession with suicide-- could not shake the suicidal thoughts-- was OCD. Anyway pregnancy seem to cure me of all my emotional problems.

 

I am suffering now, but it's from watching my son suffer.

 

Or is it? For the last few years, while this thing has ravaged my son, I've gotten sicker and sicker myself. Chronic sinus infections (I have one now)... which debilitate me emotionally (I've read about the link between sinus and depression) I find myself wondering if this resistant streptococcus pneumonai we've been discussing, which seems to have taken root in my son, has taken root in me again as well.

 

Bronxmom, very interesting and heartbreaking. I am sorry you are not well. Have you been on a good round of antibiotics for your sinus infection? Will your doctor consider longer term antibiotics for you to see if you get well?

 

Susan

[EAMom]

Bronxmom2...I ditto Susan's comments.

[Stephanie2]

I have wondered the same thing. My first bout with major depression occured with an acute exacerbation of my son's pandas (this is hindsight b/c we just received the dx). I have always thought that this occured b/c he was so unmanagable, but I am really starting to wonder if I get depressed when he has an exacerbation b/c I also have strep with him...I am going to be tested soon.

 

Stephanie

 

I had it. I'm quite certain of it. I had lots of strep, then at age 6-7 I developed a vocal tic and irrational feelings of guilt. I suffered through my whole adolescence and young adulthood from an inexplicable emotional pain and was hospitalized several times around age 18 because I was suicidal. I also self-injured. I was suicidal through my twenties, but I resisted all the diagnoses that came my way because they did not quite make sense to me. I also refused psychiatric medication because of a gut instinct that it would do not good. I now realize the obsession with suicide-- could not shake the suicidal thoughts-- was OCD. Anyway pregnancy seem to cure me of all my emotional problems.

 

I am suffering now, but it's from watching my son suffer.

 

Or is it? For the last few years, while this thing has ravaged my son, I've gotten sicker and sicker myself. Chronic sinus infections (I have one now)... which debilitate me emotionally (I've read about the link between sinus and depression) I find myself wondering if this resistant streptococcus pneumonai we've been discussing, which seems to have taken root in my son, has taken root in me again as well.

[KeithandElizabeth]

I think that this is a combination of an illness that has been around for a long time and not correctly diagnosed as well as a rise recently since we are seeing an increase in general of all diseases, including autoimmune diseases. I think that we have had a rise in disease due to our food system, increase in vaccinations, increase in antibiotics and environmental pollution. These are just my random thoughts. I fully vaccinated my children and my son is currently on a year of antibiotics.

 

I am pretty much an open book about our son's illness and I have had 3 acquaintances tell me that their children had/have severe OCD/anxiety and two of the children have had rages. All three have children on antidepressants and all three children have had a series of strep infections without symptoms. I know that I am biased right now in terms of PANDAS, but I really think all three of these children have PANDAS. I try to casually discuss my situation to hint that this may be their situation, but they do not seem to be taking the hint. One child had stopped eatings 3 years ago (before I knew them) and had to be put in the children's hospital for 8 days. This child has not touched his mom in 3 years because he is afraid of germs. How sad! I do not really know these people so well, but I questions how far to go with boundaries in telling people that they may want to consider PANDAS.

 

Anyway, I am rambling a bit to emphasis that I really think that many of these children who have been misdiagnosed.

 

Elizabeth

[dcmom]

Elizabeth-

 

I agree with everything you said!

 

Eileen

[ShaesMom]

I had it. I'm quite certain of it. I had lots of strep, then at age 6-7 I developed a vocal tic and irrational feelings of guilt. I suffered through my whole adolescence and young adulthood from an inexplicable emotional pain and was hospitalized several times around age 18 because I was suicidal. I also self-injured. I was suicidal through my twenties, but I resisted all the diagnoses that came my way because they did not quite make sense to me. I also refused psychiatric medication because of a gut instinct that it would do not good. I now realize the obsession with suicide-- could not shake the suicidal thoughts-- was OCD. Anyway pregnancy seem to cure me of all my emotional problems.

 

I am suffering now, but it's from watching my son suffer.

 

Or is it? For the last few years, while this thing has ravaged my son, I've gotten sicker and sicker myself. Chronic sinus infections (I have one now)... which debilitate me emotionally (I've read about the link between sinus and depression) I find myself wondering if this resistant streptococcus pneumonai we've been discussing, which seems to have taken root in my son, has taken root in me again as well.

 

Immune deficiency's can run in families. Most people are not dx'd until their 30's & 40's after years of suffering. Perhaps your chronic sinus infections are a sign that you may also have an immune deficiency. I was dx'd with Fibromyalgia last year and also have issues with chronic strep and bronchetis. I have seriously considered the fact that it may be something I myself have but right now I want to concentrate on getting my daughter healthy.

Have you considered having the blood work done on your son and yourself?