post-PEX plan

[bronxmom2]

Here is my plan for protecting my son post-PEX:

 

-- give him daily Zith, 250 mg, and worry later about explaining how I've gone through a year's worth of prophylactics in 3.5 months.

-- homeschool

-- avoid the dentist

-- avoid places like indoor playgrounds, indoor water parks, etc.

 

One question I had about the PEX (and others have wondered too, I know)... if they remove all the antibodies from our kids' blood, aren't they then like newborn babies with no immunity to anything? Strangely, no one at Georgetown could answer that.

 

I really feel that after consuming $40,000 worth of health care, I have a responsibility to try be careful now and make the most of this!

 

Any other suggestions?

 

Daily I am going to give him:

Zith,

probiotics,

advil (to speed the deflammation),

fish oil,

vitamins.

 

I was also fascinated by the idea of N-Acetyl glucosamine (NAG) that kim mentioned last week (it's supposed to do something to regulate the T cells) and GABA, which someone mentioned as a natural anti-anxiety (I bought some and took it myself and have given to him only when he seemed really agitated)... but I don't want to load him up with too much stuff.

[faith]

bronx,

if you wind up giving the NAG, could you please keep us updated if you note anything adverse, i.e. increase of symptoms? same with the fish oil. not saying that I think it will, but some of us have tried fish oil over the years and somehow it seems to increase symptoms of tics in our kids (at least initially anyway). But since you are now post pex, this is a new ball game. but I'd like to know of your experience with thos, especially the NAG and the fishoil.

 

thanks,

long island..

[LNN]

Here is my plan for protecting my son post-PEX:

 

-- give him daily Zith, 250 mg, and worry later about explaining how I've gone through a year's worth of prophylactics in 3.5 months.

 

 

One question I had about the PEX (and others have wondered too, I know)... if they remove all the antibodies from our kids' blood, aren't they then like newborn babies with no immunity to anything? Strangely, no one at Georgetown could answer that.

I know my post will not be received well by some, but I have to respectfully disagree with your plan to give a dose of antibiotic not prescribed by your doctor. If you have found someone to support you and get you pex and give you a year of prophylactics, then why would you jeopardize your relationship with your doctors by sending a message that you don't respect their medical knowledge? If you feel strongly that 250mg/day is appropriate, then argue your case and provide evidence. But if I was a doctor and my patient decided she knew better than I did, I'd fire that patient. If this happens, you will be doing your child a world of disservice and you will be leaving him vulnerable in the middle of the winter without antibiotics.

 

I strongly urge you to work with your doctor, not against. We have to partner with the few doctors willing to support us.

 

As for your question about the antibodies, it was explained to me that while you are throwing out the antibodies circulating in the blood, you still have memory T cells that know how to re-create antibodies to something your child has already been exposed to. Sort of like having a reference library where you body can pull out the recipe for how to fight chicken pox and whip up a new batch faster than it did the first time the body was exposed.

 

In pex, you are throwing out the body's "standing army" You do need to give the body time to replace its serum. But it's not like it stays that way forever. The body replaces its blood roughly every three months. The reason people who are over the age of 60 may have better resistance to swine flu isn't because they still have antibodies floating around from an exposure they had when they were younger. It's because they have the recipe in the resource library and know how to make a new batch of antibodies faster than the rest of us.

 

I asked if all of this meant that the next time my son was exposed to strep, would the body whip up a new batch of renegade PANDAS flavored antibodies, since this was what was in the recipe book. No one could give me an answer. But based on the relapses some have seen post pex and the argument in favor of doing prophylactic abx until puberty, I think the answer is that the body will always have the wrong recipe. So our goal becomes finding a way to keep the recipe from ever being needed again by preventing any future infections. Providing your doctor with this sort of explanation (in a far more scientific manner) may well help get you a stronger daily prophylactic. But personally, I would encourage you to not bite the hand that feeds you.

[peglem]

I asked if all of this meant that the next time my son was exposed to strep, would the body whip up a new batch of renegade PANDAS flavored antibodies, since this was what was in the recipe book. No one could give me an answer. But based on the relapses some have seen post pex and the argument in favor of doing prophylactic abx until puberty, I think the answer is that the body will always have the wrong recipe. So our goal becomes finding a way to keep the recipe from ever being needed again by preventing any future infections. Providing your doctor with this sort of explanation (in a far more scientific manner) may well help get you a stronger daily prophylactic. But personally, I would encourage biting the hand that fed me.

I love the recipe analogy! PANDAS flavored antibodies....I sure get that!

[bronxmom2]

I hear you, and I have worried about that, but my instincts tell me that he needs the antibiotics more than 2X weekly. I have tried to call in a request to up it, but this doctor is just so busy.

 

I have an appointment with my regular ped. and I'm hoping he will prescribe a stronger antibiotic dose-- he's done so in the past.

 

It just seems foolish and terrifying to risk everything by giving the lowest possible dose of antibiotics-- as you said, the key now is to prevent the body was cooking up the PANDAS-flavored antibodies again.

[mom md]

The PEX only removes any immunity he has just built up in the last 2-3 months. The "history" of his immune system is safe and secure.

[sf_mom]

Dr. K also recommended:

 

Ester C

Vitamin E

Mulit with 'Folic Acid'

 

We choose to give him Red Reishi instead of Advil because it acts as an anti-inflammatory plus other benefits. http://www.reishi.com/FAQ.htm#15

 

As you probably know, we also made the independent decision to up our son's antibiotic and eventually followed up with Dr. K. He had no problem with us doing this during the acute phase post IVIG to manage our son's health as he recovers. Also Dr. K, often says what I know today may change in six months as the discovery with PANDAS is changing rapidly.

[FallingApart]

Question re: advil. Do you give the standard dose for the child? Or a larger dose? And do you do it every 6 hours or just twice a day? How long is it safe to continue giving advil regularly to our children?

 

This last week we were concerned that DDs liver was failing because she was yellow. We ran labs and she is fine. Our ped thinks that the yellow-that then turned into severe paleness-is a function of the PANDAS taking a toll on her body. But it scared me to pieces thinking about all the stuff she takes.

[faith]

mom md,

sorry, could you ellaborate on what you said above? I'm interested in what you meant, but not sure I get it.

 

 

thanks

Faith

[bronxmom2]

I am curious about that too... what if the "history" of their immune systems includes PANDAS?

[sf_mom]

My hope is to 'retain' his antibodies with donor antibodies/IVIG.

 

I am curious about that too... what if the "history" of their immune systems includes PANDAS?

[faith]

I don't know whats wrong with me today, but I don't get that either SFmom. Retain to me, means to keep? do you mean keep them replenished? sorry, too many m&m's last night.

 

Faith

[peglem]

My hope is to 'retain' his antibodies with donor antibodies/IVIG.

 

I am curious about that too... what if the "history" of their immune systems includes PANDAS?

 

I get the "history" of the immune system...like the recipe book for making antibodies that have been seen before- I don't see how to erase the recipe for strep antibodies, so I suppose we must prevent strep?

 

But, I don't understand "retaining antibodies with donor antibodies/IVIG." Can you explain what you meant, SF Mom?

[mom md]

Basically when you do PEX, the immune system "library"is still kept intact. It removes any antibodies that are in the blood, but not the ability of the memory B ceels to fight infection. For example, if you had Parvo virus as a child, your immune system will remember that and you can't get it again, even after PEX. If you had a flu shot though 2 months before PEX the B cells have not had time to commit it to memeory and the benefit would be lost.

The more I learn though, the more I am concerned that the memory B cells and Tcells may need to be re-trained which is the purpose of IVIG. I think the purpose of the antibiotics is to prevent the exposure to strep and the production of antibodies by the T cells. For children that have had this a while, one dose of IVIG and PEX may not be enough. I think if this disease is caught early, antibiotics and possibly steroids can work and be enough. For those that continue to produce antibodies to strep just with any stress on the immune system more maintenance may be needed. I think this is the purpose of being evaluated by an immunologist if your child has had it a while. I am trying to see if PANDAS is a symptom of a larger problem with his immune system since we had it so long.

[mylittleangel]

How do you know how long your child has had PANDAS? My sonhas had tics (not noticeable) since he was maybe 2 and then when he was 3-1/2, they starting getting progessively worse. He now just turned 6. Does that mean he has had PANDAS for 4 years? Is that a long time? I am freaking out!