Some things that have helped (and haven't)

[Stephanie2]

As we move along on this journey, I like to update the forum from time to time on where we are. As many of you know, we have run into problems with yeast/bacteria so we are not doing great with that, but in terms of pandas, things are really good around here (despite ds2 getting strep last week)! So here is some of what we are doing with DS5 and DS2:

 

LDN (Low Dose Naltrexone-modulates immune system and antiinflammatory) - very immediate and excellent effect

Spironolactone (mod immune sys and antiinflam)

Enhansa (antiinflam)

5HTP (has helped with OCD and meltdowns tremendously - 75mg for ds5, 50 mg for ds2 given at night)

Magnesium Glycinate for tics and ADHD

Taurine for tics and ADHD

IVIG (one transfusion of 1mg/kg for DS5, kicked in at 3 weeks post)

Steroid bursts (very temporary effect)

Steroid taper for DS2 - excellent and results stuck until next strep infection (last week)

azith weekly (up until a few days ago)

 

 

It was also suggested that we try Namenda for meltdowns and mood swings, and when I tried it in ds5 i witnessed a lot of things that I liked (increased focus on school work, etc.) but some things I did not (hostility/sadness/deflated personality).

 

 

We are also doing things for oxidative stress and poor methylation which also increase inflammation: grapeseed extract, lots of antioxidants, TMG, Methyl B12 injections, methionine, folinic acid.

 

If I had to pick out the things that helped the most: IVIG, Steroid Taper, LDN, Spiro, 5HTP

 

Just thought I would share!

[Kayanne]

Thanks for the update.

 

I don't do much in the way of supplements because (1) my daughter is doing great and (2) I get concerned about adding too much in, and one thing being contraindicated with another...and such.

 

I give my daughter her antibiotic in the morning, afternoon & evenings is when I give probiotic, fish oil, multivitmin and mineral, and extra vit c.

 

I was wondering, since you have a lot of experience with supplements, what are your guidelines for adding something in...ya know, how long before you don't add anything else, how long before you would say a supplement is working, not working, or making things worse....I'm considering adding something else in...

[matis_mom]

Thanks Stephanie for sharing your protocol! I'm glad to see things are looking up for you guys. Would you mind sharing dosage/brand for all of them?

 

I thought I would share my own little success story. I think changing ds's diet has had a tremendous impact in his well-being. We are in a tight spot right now, because I know at least two of my kids have strep (starting prescription for everyone today). This has been going on for weeks now with me not clearing strep. But ds is doing pretty well! Just a couple of complaints about joint pain, and a minor increase in OCD (watch all h### break loose now! Please God don't let it be so!). He has more energy, seems overall happier, and his tummy is doing better too. I am still waiting to get the result of the food sensitivity testing, so he is still on a very limited diet, and it's hard to keep it up, but I would totally recommend this to anyone willing to give it a try. The funny thing is he is being super compliant, and not complaining at all about not being able to have this or that. Hopefully when I get the results back we can ease up a bit, but for now, he is totally sugar free, grain free, and dairy free. DD10 is next on my list (I can only do the "introduction" part one kid at a time since it requires a lot of cooking!)

 

Incidentally, I recently added magnesium too, since I've heard is very important if you have Lyme (no confirmation on my kids, but just in case), so that could be another reason he is doing better. And, I finally switched to a probiotic that does not contain S. thermophilus. Guess I should have done this one thing at a time to know what is working!

[Stephanie2]

Thanks for the update.

 

I don't do much in the way of supplements because (1) my daughter is doing great and (2) I get concerned about adding too much in, and one thing being contraindicated with another...and such.

 

I give my daughter her antibiotic in the morning, afternoon & evenings is when I give probiotic, fish oil, multivitmin and mineral, and extra vit c.

 

I was wondering, since you have a lot of experience with supplements, what are your guidelines for adding something in...ya know, how long before you don't add anything else, how long before you would say a supplement is working, not working, or making things worse....I'm considering adding something else in...

 

Well, I have been doing biomedical for the past 1.5 years with both of my boys and it has taken me much longer than usual b/c it seems like every time I add something there was a pandas flare so I always blamed it on the most recent supplement. Then I learned that they both have pandas and it has taken over a year to get them stable. So now I add things only when they are completely pandas-symptom free and usually one at a time, one week apart.

 

 

Thanks Stephanie for sharing your protocol! I'm glad to see things are looking up for you guys. Would you mind sharing dosage/brand for all of them?

 

I thought I would share my own little success story. I think changing ds's diet has had a tremendous impact in his well-being. We are in a tight spot right now, because I know at least two of my kids have strep (starting prescription for everyone today). This has been going on for weeks now with me not clearing strep. But ds is doing pretty well! Just a couple of complaints about joint pain, and a minor increase in OCD (watch all h### break loose now! Please God don't let it be so!). He has more energy, seems overall happier, and his tummy is doing better too. I am still waiting to get the result of the food sensitivity testing, so he is still on a very limited diet, and it's hard to keep it up, but I would totally recommend this to anyone willing to give it a try. The funny thing is he is being super compliant, and not complaining at all about not being able to have this or that. Hopefully when I get the results back we can ease up a bit, but for now, he is totally sugar free, grain free, and dairy free. DD10 is next on my list (I can only do the "introduction" part one kid at a time since it requires a lot of cooking!)

 

Incidentally, I recently added magnesium too, since I've heard is very important if you have Lyme (no confirmation on my kids, but just in case), so that could be another reason he is doing better. And, I finally switched to a probiotic that does not contain S. thermophilus. Guess I should have done this one thing at a time to know what is working!

 

Mati's mom, my son is calling from the crib, so I'll have to get back to you on the brands/dosages. They are also on a gluten free, casein free diet but I have gotten more results from that in terms of autism and asthma symptoms. In my opinion the diet has done little for pandas (ugh!)...

[tpotter]

We've found 5-HTP to help my boys sleep (I played with the dosage, and found that 3 at dinner help my DS14, and 4 at dinner help my DS17). Also, I stumbled over this next one, and I swear it works on my son, and several others have said it ended up helping their children.

 

Peanuts (or peanut butter.) When my son was raging, I wanted to find something high in protein and high in fat that wasn't meat (he doesn't like meat.) What did I have in the house...peanut butter. Now, before anyone tries to claim that it is placebo (who really cares anyway...it works), he HATES peanut butter! But, 1 T (sometimes 2 -3 if the rage is really bad, stops him, literally in minutes.

 

I have told many doctors, and of course most don't believe. But, Dr. K. agreed with me that it was probably because it's high in tryptophan and high in fat (which takes it straight to the brain.

 

Anyway, if you try it and it works, please let me know (you can PM me.) We still carry peanuts everywhere we go, and when the mood starts to deteriorate...out come the peanuts (now we use gorp...peanuts, raisins and PEANUT M&M's, but he's very limited on the number of M&M's, because I don't want him having so much sugar.

 

For what it's worth, it does not usually help my DS17, so something different is going on there.

[LaraM]

Hi Stephanie!

We're on some of the same things, but I want to look into LDN, Enhansa and Spironolactone. BTW, Dr. R put DS5 and DS7 on 100 mg of 5 HTP. I have found that if I mix that in with their probiotics right at bedtime, they sleep really well (I hear the angels singing!!). DS5 has even been going to bed without extreme anxiety and needing me in the room EVEN with the strep infection last week. We experienced the exact same thing as your family...the bacteria has been the issue with DS5 this time around--really not much PANDAS related (some OCD needing to touch evenly, but we can take that over rages any day!). DS7...still a bit of a vocal tic (particularly when he is reading out loud), but hopefully it will improve. Dr. R prescribed a steroid taper along with Flagyl. We'll start the Flagyl tomorrow (if DS5 can keep it down). Five days post-Flagyl, we'll start the steroid taper. He also prescribed oxytocin nasal spray, but it hasn't arrived from the compounding pharmacy yet. Has anyone ever tried that...we're hoping it will hope with social interaction/eye contact. Picked up some Olive leaf extract today too...I'll start that after all abx come to an end.

[Stephanie2]

Hi Stephanie!

We're on some of the same things, but I want to look into LDN, Enhansa and Spironolactone. BTW, Dr. R put DS5 and DS7 on 100 mg of 5 HTP. I have found that if I mix that in with their probiotics right at bedtime, they sleep really well (I hear the angels singing!!). DS5 has even been going to bed without extreme anxiety and needing me in the room EVEN with the strep infection last week. We experienced the exact same thing as your family...the bacteria has been the issue with DS5 this time around--really not much PANDAS related (some OCD needing to touch evenly, but we can take that over rages any day!). DS7...still a bit of a vocal tic (particularly when he is reading out loud), but hopefully it will improve. Dr. R prescribed a steroid taper along with Flagyl. We'll start the Flagyl tomorrow (if DS5 can keep it down). Five days post-Flagyl, we'll start the steroid taper. He also prescribed oxytocin nasal spray, but it hasn't arrived from the compounding pharmacy yet. Has anyone ever tried that...we're hoping it will hope with social interaction/eye contact. Picked up some Olive leaf extract today too...I'll start that after all abx come to an end.

 

Who is getting the steroid taper, ds5? For what reason?

 

My friend tried oxytocin on her ASD son and she did feel that it helped social interaction...

 

Talk to you soon!