what is on that list again?

[norcalmom]

...I can't seem to find what Dr K recommends for post ivig...buffered vitamin C ...trytophan rich diet...fish oil...what else was there? Any of you been there lately and know the list by heart (cuz yoour counting out pill everymoring?!)

 

Thanks!

[philamom]

...I can't seem to find what Dr K recommends for post ivig...buffered vitamin C ...trytophan rich diet...fish oil...what else was there? Any of you been there lately and know the list by heart (cuz yoour counting out pill everymoring?!)

 

Thanks!

It's been almost two years, but I remember it as buffered Ester Vit C , Folic Acid, Vitamin E, and tablespoon of fish oil.

Edited April 8, 2011 by philamom

[lmi1973]

Esther C

Folic Acid

Vitamin E

Omega 3

 

My son also diagnosed with myco p and was told a good B12 vitamin should be added, garlic, and coenzyme Q10, and to make sure omega/fish oil was pharmaceutical grade.

[butterflymom]

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Edited October 5, 2015 by tampicc

[SSS]

I've been wondering why vitamin E isn't on the list for my child. . . . .not sure if it was left out, or if Dr. K doesn't use it for younger children?

 

My son is 6, and 55 lbs. Our list post-ivig was:

 

Augmentin, treatment dose for two weeks, then AM only, prophylactic dose (we are using the 400 mg chewables)

Probiotic of choice

Fish oil (one tbs daily, minimum 500 EPA)

Ester c 250 mg every morning for 6 weeks

Folic acid 200 mg every morning for 6 weeks

Emphasis on Tryptophan-rich diet

 

 

May I ask: what day did you start the antibx. back up after IVIG?

Also, which fish oil are you using for the 500 EPA?

Thank you!

 

ETA: Never mind, I found one, and I will start up her antibx. again a few days after...thanks!

Edited April 11, 2011 by S & S

[butterflymom]

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Edited October 5, 2015 by tampicc

[SSS]

Hi Sarah, abx were immediately after IVIG at treatment dose for two weeks, and then kept at treatment dose two more weeks because his sister got strep. So after a month, we went prophylactic.

 

What EPA supplement did you find?

 

The only ones my son will take are the sweetened fruit flavored gels/liquids. We use Barlean's Omega swirl (Mango/Peach) in the morning, and a Coromega orange packet at bedtime.

 

Does anyone think my child should be on Vitamin E also?

 

 

I find that really interesting about the treatment dose antibx. right after IVIG for 2 weeks! No clue on that one- we are on 200 mg. Azith. a day (40 pounds) I'm hesitant to put it up to 400 mg a day....hmm. She is going to be home, though (pulling her out of K for the last 5 weeks of the year.)

My dd6 swallows pills, which has been a game changer for us. So I was able to buy the Nordic Naturals Pro EPA gel caps Lemon flavored, one soft gel a day will provide 425 mg. EPA with 15 IU Vitamin E.

I give her a chewable multi-vitamin every day anyway, that has the folic acid, and some chewable C's.

 

Still pondering that full treatment dose antibx. 2 weeks after IVIG. I wonder why??

[pixiesmommy]

Discussions about Dr K never cease to amaze me. He never recommended ANY supplements for us and pooh-poohed us for asking about things we were considering giving, including fish oil. ::shakes head:: Just amazing...

[butterflymom]

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Edited October 5, 2015 by tampicc

[butterflymom]

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Edited October 9, 2015 by tampicc

[pixiesmommy]

Yes, he is absolutely pro-IVIG. That is exactly what we got from him, and a year of abx. No less, no more. He does not believe in Lyme and DISCOURAGED us to do any IGG/IGA testing, Lyme testing, etc. When I asked about both PID and Lyme, he just shook his head and said I can do what I want as a parent, but he would not put her through testing because nothing is there. She tested positive for 5 bands on Western Blot and since we haven't re-tested for PID again, I don't know about the PID, but the Lyme dr thinks it's a real possibility since she was low even at the 6 month post-IVIG mark when we DID pursue testing.

 

I never asked Dr K about diet, but told him what we were doing at a check-up once. By the pt we were doing dietary things, we already had kind of a feel for what things he was interested in and recommending. He said to us once something about doing so many things and paying such close attention to Pixie, in a kind of disdainful tone. I think he was irritated that we weren't putting 100% faith in JUST the IVIG and abx and it was interfering with his research. This irritates me because then he can say in the same breath that she is 80%, 90% or whatever % recovered. Sorry, I don't buy that it is IVIG alone, and I signed her up for IVIG as a treatment, not to be a guinea pig (even though she kinda is by default.)

 

We mentioned that we did chiropractic and he just said, "It probably won't help, but it probably can't hurt." We asked him for a medical exemption for vaccines and he refused, saying she can be vaccinated- that vaccines are fine. He wanted her off all meds when we did IVIG... and when I specifically asked about any supplements to help, he just shook his head and said Antibiotics and Florastor for a year and she would be cured.

 

 

Just so many inconsistencies from what I hear from other parents. There have been a few that I have seen just today and that is why I mention it. We had IVIG w/him around 18 months ago.

[butterflymom]

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Edited October 9, 2015 by tampicc

[NancyD]

If you're taking Omega 3 you should also be taking vitamin E.

 

Does anyone think my child should be on Vitamin E also?

[butterflymom]

=

Edited October 9, 2015 by tampicc

[Doug]

I've been wondering why vitamin E isn't on the list for my child. . . . .not sure if it was left out, or if Dr. K doesn't use it for younger children?

 

My son is 6, and 55 lbs. Our list post-ivig was:

 

Augmentin, treatment dose for two weeks, then AM only, prophylactic dose (we are using the 400 mg chewables)

Probiotic of choice

Fish oil (one tbs daily, minimum 500 EPA)

Ester c 250 mg every morning for 6 weeks

Folic acid 200 mg every morning for 6 weeks

Emphasis on Tryptophan-rich diet

Hello

We had IVIG # 2 with Dr.k in Feb for my dd she is 6 also

and we got the same list but no vitamin E

But I am not sure I could get her to take anything more anyway

 

How is your son doing?

 

Thanks

Tracie