Am I giving my son strep?

[Stephanie2]

I think I already know the answer to this question, but I just need to hear it from you smart mommies who are further in this journey than we are.

 

My son has been in a pandas episode since aug. 12 (got positive strep test one week later, been on and off of different anx ever since). We are waiting to see Latimer next week.

 

The thing is that everytime we lower his dose of zithromax or we change his abx, he "crashes" (meltdowns, tics, etc...). But I have noticed a pattern that is leading me to believe that I am the one who is constantly reinfecting him. I went on a 6 day vacation to visit family about a month ago (without dh and the boys) and while I was gone, pandas ds did not do his typical "crash" when my husband ran out of zithromax. Then 24 hours after I got back - CRASH!

 

Now, once again my dh and pandas ds are out of town together and once again they ran out of zithromax and my dh says that my son is just as sweet as ever! No major tics, no meltdowns!!????

 

Let me add to this (and this is what makes it a no-brainer, I guess) that I have had a sore throat on and off ever since aug. 12 when my son initially got strep. Well, a couple days ago (after dh and ds left) I gave in and started a 5 day course of zithromax and my sore throat and body aches are gone.

 

So...am I on track to believe that mommy is the culprit in this house??? And if so, should I, myself, stay on zithromax until we talk to Latimer so that he doesn't crash when they come home on Friday?

 

Wow, this disorder is really crazy!!

Stephanie

[Stephanie2]

I want to add a question here...

 

The other thing that I have noticed is that, looking back, it seems like when my son goes into an exacerbation I go into a major depression. I have always thought that it is b/c all of a sudden he is unmanagable and I am "beside myself" with stress. Well, now I am wondering if it is b/c I am getting strep right along with him and the strep is making me go into a pandas episode of my own! I know that this is a pediatric illness, but still...

 

Anyone have any insight on this?

 

Stephanie

 

I think I already know the answer to this question, but I just need to hear it from you smart mommies who are further in this journey than we are.

 

My son has been in a pandas episode since aug. 12 (got positive strep test one week later, been on and off of different anx ever since). We are waiting to see Latimer next week.

 

The thing is that everytime we lower his dose of zithromax or we change his abx, he "crashes" (meltdowns, tics, etc...). But I have noticed a pattern that is leading me to believe that I am the one who is constantly reinfecting him. I went on a 6 day vacation to visit family about a month ago (without dh and the boys) and while I was gone, pandas ds did not do his typical "crash" when my husband ran out of zithromax. Then 24 hours after I got back - CRASH!

 

Now, once again my dh and pandas ds are out of town together and once again they ran out of zithromax and my dh says that my son is just as sweet as ever! No major tics, no meltdowns!!????

 

Let me add to this (and this is what makes it a no-brainer, I guess) that I have had a sore throat on and off ever since aug. 12 when my son initially got strep. Well, a couple days ago (after dh and ds left) I gave in and started a 5 day course of zithromax and my sore throat and body aches are gone.

 

So...am I on track to believe that mommy is the culprit in this house??? And if so, should I, myself, stay on zithromax until we talk to Latimer so that he doesn't crash when they come home on Friday?

 

Wow, this disorder is really crazy!!

Stephanie

[EAMom]

sounds like a great theory to me.

[ShaesMom]

Sounds like you might be the smoking gun! Make sure you retest after you finish your Zpack and throw away all your lip gloss and lipstick in addition to toothbrushes and toothpaste.

[PANDAS_Denmark]

I want to add a question here...

 

The other thing that I have noticed is that, looking back, it seems like when my son goes into an exacerbation I go into a major depression. I have always thought that it is b/c all of a sudden he is unmanagable and I am "beside myself" with stress. Well, now I am wondering if it is b/c I am getting strep right along with him and the strep is making me go into a pandas episode of my own! I know that this is a pediatric illness, but still...

 

Anyone have any insight on this?

 

Stephanie

b m

I think I already know the answer to this question, but I just need to hear it from you smart mommies who are further in this journey than we are.

 

My son has been in a pandas episode since aug. 12 (got positive strep test one week later, been on and off of different anx ever since). We are waiting to see Latimer next week.

 

The thing is that everytime we lower his dose of zithromax or we change his abx, he "crashes" (meltdowns, tics, etc...). But I have noticed a pattern that is leading me to believe that I am the one who is constantly reinfecting him. I went on a 6 day vacation to visit family about a month ago (without dh and the boys) and while I was gone, pandas ds did not do his typical "crash" when my husband ran out of zithromax. Then 24 hours after I got back - CRASH!

 

Now, once again my dh and pandas ds are out of town together and once again they ran out of zithromax and my dh says that my son is just as sweet as ever! No major tics, no meltdowns!!????

 

Let me add to this (and this is what makes it a no-brainer, I guess) that I have had a sore throat on and off ever since aug. 12 when my son initially got strep. Well, a couple days ago (after dh and ds left) I gave in and started a 5 day course of zithromax and my sore throat and body aches are gone.

 

So...am I on track to believe that mommy is the culprit in this house??? And if so, should I, myself, stay on zithromax until we talk to Latimer so that he doesn't crash when they come home on Friday?

 

Wow, this disorder is really crazy!!

Stephanie

 

 

Hi Stephanie -

 

You are quite right : This disorder is really, really crazy in every aspect !

 

It is possible, yes, that you infect your son, that is : Maybe you don´t actually infect him but "only" expose him.

 

Exposing af child with PANDAS with streptococcus is in many cases enought to start a PANDASepisode in the child.

 

If I were you I would get testet for strep, and have the test cultured. This should give you an answer wether you should stay on zithromax or not.

 

Regarding your question about your major depressions when your son goes into an exacerbation : Being the mother of a 9year old boy with PANDAS, I know, that there is reason to be depressed every time your child is having an exacerbation !

 

However it IS possible, that you are reacting yourself, when having or even being exposed to strep, too.

 

I myself has had neurological MSlike symptoms in years. Infections (and especially strepinfections) resulted in a new attack, resulting in new neurologial symptoms.

 

Before my son had his first PANDASepisode, I used to explain these (infections leading to attacks leading to) new neurological symptoms as stress due to work.

 

Untill my son was diagnosed with PANDAS (but having several PANDASepisodes), I used to explain my (infections leading to attacks leading to) new neurological symptoms as stress - due to my sons PANDASepisodes.

 

However : When my son was diagnosed with PANDAS, that is when I realized, that there is a connection between (strep)infections and neuropsychological diseases, I started wondering and examining wether there might be another explanation than stress.

 

As part of my examination I had blod tests run by Dr. Cunningham !

 

To make a long story short : I have been diagnosed with MDEM (Multiphasic Disseminated EncephaloMyelitis), that is : Autoimmune reactions to strep (and other bacterias and vira) results in encephalomyelitis, causing new neurological symptoms !

 

All the best wishes and regards -

[Stephanie2]

Shaesmom, you make a great point! I switch the kids toothbrushes, but it never occured to me to switch mine. Also, should I switch husbands now and then...LOL :-) I mean, even though life gets crazy, we do kiss occassionally!

 

OK, in all seriousness, we all need to go get tested and treated at the same time...I am starting to see that.

 

Stephanie

 

Sounds like you might be the smoking gun! Make sure you retest after you finish your Zpack and throw away all your lip gloss and lipstick in addition to toothbrushes and toothpaste.

[Stephanie2]

Wow, PANDAS Denmark! What a fabulous discovery for you!

 

Question for you...when you did the Cunningham test, what was your "score" and who did you bring your results to...who ultimately gave you this dx?

 

I am REALLY starting to wonder if my depression is due to strep! Or even any other bacteria or viruses... I mean, I didn't have depression before all of this happened. And you just assume that the kids make you crazy when they act so crazy, but I never thought that maybe this is truly a "household disease" in our case. I do have to say that since I have been on this z pack I have really felt different. My outlook has been very positive (but then again, pandas ds is out of town...LOL).

 

Stephanie

 

Hi Stephanie -

 

You are quite right : This disorder is really, really crazy in every aspect !

 

It is possible, yes, that you infect your son, that is : Maybe you don´t actually infect him but "only" expose him.

 

Exposing af child with PANDAS with streptococcus is in many cases enought to start a PANDASepisode in the child.

 

If I were you I would get testet for strep, and have the test cultured. This should give you an answer wether you should stay on zithromax or not.

 

Regarding your question about your major depressions when your son goes into an exacerbation : Being the mother of a 9year old boy with PANDAS, I know, that there is reason to be depressed every time your child is having an exacerbation !

 

However it IS possible, that you are reacting yourself, when having or even being exposed to strep, too.

 

I myself has had neurological MSlike symptoms in years. Infections (and especially strepinfections) resulted in a new attack, resulting in new neurologial symptoms.

 

Before my son had his first PANDASepisode, I used to explain these (infections leading to attacks leading to) new neurological symptoms as stress due to work.

 

Untill my son was diagnosed with PANDAS (but having several PANDASepisodes), I used to explain my (infections leading to attacks leading to) new neurological symptoms as stress - due to my sons PANDASepisodes.

 

However : When my son was diagnosed with PANDAS, that is when I realized, that there is a connection between (strep)infections and neuropsychological diseases, I started wondering and examining wether there might be another explanation than stress.

 

As part of my examination I had blod tests run by Dr. Cunningham !

 

To make a long story short : I have been diagnosed with MDEM (Multiphasic Disseminated EncephaloMyelitis), that is : Autoimmune reactions to strep (and other bacterias and vira) results in encephalomyelitis, causing new neurological symptoms !

 

All the best wishes and regards -

[bronxmom2]

I have a similar story.

 

In hindsight, I am now quite sure I had PANDAS as a child.

 

And I am now quite sure that my PANDAS son and I affect each other.

 

Before I knew about PANDAS, I called this our "death spiral"-- when his behavior spun out of control, I seemed to really lose my bearings as well, feeding his loss of control, creating a deep depression in myself, etc.

 

I have been tempted to get my Cam K number as well.

[Stephanie2]

You, too? Do you notice a difference when you go on an antibiotic?

 

I have to say that it is so plausible that it is just the stress bringing us to depression. But here is my thought. I have always been a very strong individual and I have found myself surprised to not be able to overcome my son's PANDAS without meds (meaning, antidepressant for myself). I'm really curious about this! Please tell me if you decide to get tested. Maybe I will, too, eventually (have to get both of my boys tested first).

 

Stephanie

 

I have a similar story.

 

In hindsight, I am now quite sure I had PANDAS as a child.

 

And I am now quite sure that my PANDAS son and I affect each other.

 

Before I knew about PANDAS, I called this our "death spiral"-- when his behavior spun out of control, I seemed to really lose my bearings as well, feeding his loss of control, creating a deep depression in myself, etc.

 

I have been tempted to get my Cam K number as well.

[Stephanie2]

By the way, the onset of symptoms upon my arrival was so quick and dramatic (within 24 hours), that my husband actually started to think that ds doesn't have pandas at all and that I just don't know how to discipline him and that is why he fell apart when I came home!! Yeah, we had a fight over that one... (but in all honesty, I can see how someone who doesn't fully understand this illness can come to that conclusion)! Wow, I wonder how many other relatives think that about me!

 

Stephanie

 

sounds like a great theory to me.

[bronxmom2]

You, too? Do you notice a difference when you go on an antibiotic?

 

I have to say that it is so plausible that it is just the stress bringing us to depression. But here is my thought. I have always been a very strong individual and I have found myself surprised to not be able to overcome my son's PANDAS without meds (meaning, antidepressant for myself). I'm really curious about this! Please tell me if you decide to get tested. Maybe I will, too, eventually (have to get both of my boys tested first).

 

 

Yup, me too.

I do notice a big difference when I go on antibiotics. First, it seems to radically improve my own depression. Then by the next day my son seems better. Does he only seem better because the lifting of my depression has changed my perspective? This is what I always thought... but I now believe I'm having a direct impact on him.

 

I have decided to take Oil of Oregano every day myself. I had a throat culture done when I got antibiotics last week... negative.

[Stephanie2]

I also had a throat swab done (rapid) and it came back negative. But like I said, the sore throat comes and goes (BECAUSE I was trying to treat myself with things like OoO and Biocidin and natural stuff) and she did the rapid test while my throat did not hurt.

 

Let me know how the OoO works. It did not work for me this time around, but maybe after I finish my z pack I can use it prophylactically. I think I will - great idea! Thanks!

 

Stephanie

 

You, too? Do you notice a difference when you go on an antibiotic?

 

I have to say that it is so plausible that it is just the stress bringing us to depression. But here is my thought. I have always been a very strong individual and I have found myself surprised to not be able to overcome my son's PANDAS without meds (meaning, antidepressant for myself). I'm really curious about this! Please tell me if you decide to get tested. Maybe I will, too, eventually (have to get both of my boys tested first).

 

 

Yup, me too.

I do notice a big difference when I go on antibiotics. First, it seems to radically improve my own depression. Then by the next day my son seems better. Does he only seem better because the lifting of my depression has changed my perspective? This is what I always thought... but I now believe I'm having a direct impact on him.

 

I have decided to take Oil of Oregano every day myself. I had a throat culture done when I got antibiotics last week... negative.

[colleenrn]

Stephanie-

Maybe you are a carrier and that is why your culture was negative, although you can definitely have strep and get a negative rapid. Too bad they did not do a culture.

If you are a carrier, try to stay on Zith for a while and see what happens. It can sometimes be hard to clear a carrier, but it can be done. If for some reason Zith did not work, there are other options (being on 2 antibiotics at the same time. I can look them up if you want)

 

Colleen

[Stephanie2]

Colleen, maybe I am a carrier, but we did have a couple of good months over the summer, so I don't know...

 

I am working on getting my whole family cultured. Also, we have an appt with Latimer on Tuesday so I hope she can help us sort this out...

 

Thanks, Stephanie

 

Stephanie-

Maybe you are a carrier and that is why your culture was negative, although you can definitely have strep and get a negative rapid. Too bad they did not do a culture.

If you are a carrier, try to stay on Zith for a while and see what happens. It can sometimes be hard to clear a carrier, but it can be done. If for some reason Zith did not work, there are other options (being on 2 antibiotics at the same time. I can look them up if you want)

 

Colleen

[EAMom]

You could also have strep hiding out in the sinuses (or elsewhere). That could be missed with a throat culture.