Why does Dr. K not do IVIG in a child less than 4 years old?

[Stephanie2]

My 2 year old is really off the wall right now. I just found out his titers are elevated and he has not been out of exacerbation since January! The only time I have had a glimpse of my sweet toddler is when we recently did a steroid burst and then he went right back to being a mess again. I believe our doctor is willing to do IVIG at this age but he wants to try another steroid treatment dosed differently first.

 

Maybe Dr. K is afraid of liability? Or maybe he does not agree with giving a pandas diagnosis in a child that young (b/c it is hard to know what to look for - although we have been schooled in this for 4 years with my older son!)? Is IVIG contraindicated in general for a child that young?

 

Thanks,

Stephanie

[sf_mom]

Where did you hear that Dr. K doesn't do IVIG on a child under 4?

[Stephanie2]

Where did you hear that Dr. K doesn't do IVIG on a child under 4?

 

I emailed him and that's what his response was. he did not go into an explanation, just that he does not do it. I asked him if he has a different treatment protocol for those kids (in other words, what do we do in the meantime) and he said antibiotics :-o Well that leaves me with not very much to work with! My 2 yo is not doing great on anything lower than full-strength abx and we already did a steroid burst which did not last very long (gave us 5 days of relief - woohoo!).

 

SF Mom, I know you have 2 little ones with pandas, where are you at with treatment plans? My 2 year old is in a terrible exacerbation at the moment (almost worse than his big brother which I never thought possible) and we are upping his abx and considering another steroid (tapered this time). Also, I just started spironolactone on him tonight b/c it seems to be helping my 5 year old a lot.

 

Stephanie

[sf_mom]

As you know my older son has been treated by Dr. K. With our almost 3 year old twins we are doing antibiotics for now. We are watching the twins very, very, very closely and will be retesting underlying immune system over and over every 12 weeks to prove PID. I am of the impression that he will treat them if required. BUT, there is no rushing into IVIG on his part due to their age. He has promised if things should get worse he will see my children to full recovery. So far they are responding well to antibiotics. We have them out of all social settings. Our little boy has only had one cold since Nov. 2009 and our little girl has had one fever with full body rash (Dec. 28th) and one cold. I believe it is vitally important to try limit their exposures.

 

If your child is that bad off... I personally would be thinking about moving forward with IVIG. Have you talked to your current Dr. or is it possible to go to Dr. B. I know he is treating one child just turning 4. Sorry I don't have a better recommendation for you.

 

-Wendy

[Stephanie2]

As you know my older son has been treated by Dr. K. With our almost 3 year old twins we are doing antibiotics for now. We are watching the twins very, very, very closely and will be retesting underlying immune system over and over every 12 weeks to prove PID. I am of the impression that he will treat them if required. BUT, there is no rushing into IVIG on his part due to their age. He has promised if things should get worse he will see my children to full recovery. So far they are responding well to antibiotics. We have them out of all social settings. Our little boy has only had one cold since Nov. 2009 and our little girl has had one fever with full body rash (Dec. 28th) and one cold. I believe it is vitally important to try limit their exposures.

 

If your child is that bad off... I personally would be thinking about moving forward with IVIG. Have you talked to your current Dr. or is it possible to go to Dr. B. I know he is treating one child just turning 4. Sorry I don't have a better recommendation for you.

 

-Wendy

 

Wendy, you make a good point about limiting their exposure at this age. My husband is out of town and with both of my kids having such problems I have both of them in preschool right now. When my husband comes home I was planning to pull my 2yo out a few days a week, but maybe I should pull him out completely and see what happens. Only problem is that he gets EVERYTHING that my 5yo gets, no matter how I try to keep them apart or sanitize the house, etc. He has been getting sick since he was 12 days old b/c of my 5 yo!

 

Yes, he has been very bad off since Feb and seems to be getting worse and worse. He responded very positively to his steroid burst (I got him back completely for 5 days which was wonderful, he was so sweet and loving). I guess I am going to give the current abx and the spironolactone a chance to start working and see where we are at in a couple weeks. His bloodwork did not come back with an immune deficiency for now. Maybe I will have his pneum titers tested (my 5 yo failed that one and currently waiting on ins approval for more IVIG if needed).

 

Would you mind telling me what abx and dose you are giving your kids? Is it full strength or prophylactic? I'm not sure how long I can keep my 2 yo on full strength b/c his bowels don't do too well. I'm moving up his probiotics as we speak to 400 bill.

 

Stephanie

[sf_mom]

The IVIG treatment for your older son should prevent too many illnesses coming into household. AND, yes pull him from preschool until this gets figured out (if you can). It will help your older son too.

 

We give our twins the following per day.... little boy 38 pounds, little girl 27 pounds.

 

* 1.35 trillion probiotic units per day

* 1/2 cup bentonite clay

* 25,000 m.g. B-12

* Fish Oil 1000 m.g. 'Omega Brite'

* 1 homeopathic anti-viral

* 200 m.g. Arithromycin

 

The reason you are having bowel problems is due to toxins 'die off' of bacteria. If you help to eliminate toxins the bowel problems will resolve fairly quickly. We use the bentonite clay... other use charcoal pills. But, at his age I don't think your child is taking pills so bentonite clay would be the way to go in a smoothie or juice.

 

-Wendy

[AmberM]

Hi Wendy,

I'm having a lot of bowel issues with my 2 1/2 yr. old. It's mostly bad constipation. Charcoal really helps her die-off reactions but add to the constipation. Does the clay have the same effect? And how much do you give? Where do you get it?

 

thanks,

Amber

[Stephanie2]

Wendy, how in the world do you get all that in your children? I mean each of my kids are on 20 plus supps/meds per day, but with what you are giving it all has to be separated out, right? I mean the clay will absorb any meds/supps so I hear that has to be 2 hours away from everything. Also the probiotics have to be given 1-2 hours away from antibiotics. So if everything is dosed twice a day, then you are looking at giving supps 6 times a day? I usually have to give my kids supps/meds at least 4 times a day (not including the Methyl B12 shot every night while 5 yo is sleeping). I just can't imagine giving things 6 times a day on a regular basis. Maybe b/c my kids can be so noncompliant at times with it. It's like pulling teeth! So, often times I skip the charcoal which I am sure I pay for down the road.

 

You are right, though, that the bowel issues are most-likely bacterial (with a little yeast mixed in I am sure). I just sent his urine out to a lab to be tested for yeast/bacterial markers so I will see in a couple weeks what we are dealing with...I'm in the process of upping the probiotics, though.

 

Thanks,

Stephanie

[sf_mom]

The combo of bentonite clay and probiotics we have no problems with either diarrhea or constipation. I'm definitely a poop watcher in our household.

[momto2pandas]

Does your 2 year old have an immune deficiency? IVIG is routinely done for immune deficiency in very young kids. The immune system develops a lot between age 2 and 4 on its own, so maybe Dr. K is waiting to see how that works out if there isn't an active immune deficiency. Does he show signs of chronic infections?

 

When I took my 3 (nearly 4) year old to Dr. B, he basically told us that we had no choice but to do IVIG, probably frequently, because of the condition of his immune system and his chronic infections, even though his PANDAS is very, very mild. Given this, he didn't seem to feel that there was any need (or that it was even a good idea) to keep him out of preschool. In fact, he told us that we should take him right back to school immediately after the procedure to try to interrupt his life as little as possible, which we did....albeit with a lot of hand sanitizer!

[Stephanie2]

just got the results back and no (darn), he does not "qualify" for an immune deficiency. His immune system has improved quite a bit, but he has been fighting off impetigo for about 5 months now, so I don't think it is all that great. I would be curious to see if his pandas would remit if we could get on top of the impetigo...sigh. He is on his 4th abx for that and I think maybe my next stop will be a local infectious disease doctor. Maybe he will recommend IVIG for this infection, given pandas...we will see.

 

Stephanie

 

Does your 2 year old have an immune deficiency? IVIG is routinely done for immune deficiency in very young kids. The immune system develops a lot between age 2 and 4 on its own, so maybe Dr. K is waiting to see how that works out if there isn't an active immune deficiency. Does he show signs of chronic infections?

 

When I took my 3 (nearly 4) year old to Dr. B, he basically told us that we had no choice but to do IVIG, probably frequently, because of the condition of his immune system and his chronic infections, even though his PANDAS is very, very mild. Given this, he didn't seem to feel that there was any need (or that it was even a good idea) to keep him out of preschool. In fact, he told us that we should take him right back to school immediately after the procedure to try to interrupt his life as little as possible, which we did....albeit with a lot of hand sanitizer!

[sf_mom]

Stephanie,

 

Because of the dosage of everything we really don't separate except for the antibiotic at nap time.

 

So, smoothie with Kefir, probiotic, bentonite clay, juice, plus b -12/anti-viral pills in the morning, antibiotic nap, same smoothie at night.

 

-Wendy

[Stephanie2]

Maybe I don't understand the clay, then. Isn't it like charcoal in that it absorbs the exotoxins from yeast/bact in the gut? Charcoal also absorbs supps/meds unless you give 2 hours away. Does clay do that same thing?

 

I have to say I have been using charcoal a little more lately b/c our discussions and others. It has really been a lifesaver as I have increased his probiotics. Saved me a little sanity...

 

Stephanie

 

Stephanie,

 

Because of the dosage of everything we really don't separate except for the antibiotic at nap time.

 

So, smoothie with Kefir, probiotic, bentonite clay, juice, plus b -12/anti-viral pills in the morning, antibiotic nap, same smoothie at night.

 

-Wendy

[AmberM]

We used citrus pectin for a mop up and it doesn't need to be separated like charcoal does. It doesn't work as well with my daughter. The clay may be more similar to the pectin in the way that it mops things up?

-Amber

 

 

Maybe I don't understand the clay, then. Isn't it like charcoal in that it absorbs the exotoxins from yeast/bact in the gut? Charcoal also absorbs supps/meds unless you give 2 hours away. Does clay do that same thing?

 

I have to say I have been using charcoal a little more lately b/c our discussions and others. It has really been a lifesaver as I have increased his probiotics. Saved me a little sanity...

 

Stephanie

 

Stephanie,

 

Because of the dosage of everything we really don't separate except for the antibiotic at nap time.

 

So, smoothie with Kefir, probiotic, bentonite clay, juice, plus b -12/anti-viral pills in the morning, antibiotic nap, same smoothie at night.

 

-Wendy