Tuesday, December 11, 2007

DAN! Test Results and Doctor Recommendations

I received a packet from Mathew’s DAN doctor today. It included three prescriptions and the following recommendations:

1) L-carnitine solution 100 mg per 1ml Give 2 tsp p.o. B.I.D. 600 cc
2) Diflucan susp. 50 mg / 5 ml 1 tsp p.o. B.I.D. 300 cc
3) Nystatin susp. 500,000 u per 5 ml. 2 tsp p.o. B.I.D. 600cc

Avoid daily use of highest oxalate foods (examples include peanut butter, soy protein, spinach, sweet potatoes, nuts & berries), but concentrate on GFCF foods.

Use activated charcoal 1 cap at bedtime the first week of yeast treatment (Diflucan) to decrease the “die off” reaction seen day 2 to 7 of treating for yeast. Ask for caps at the drug store.

Your child needs:
CoQ 10 – add 50 mg per day
Carnitine – Rx, add 1,000mg/day
Glutathione – apply to skin daily (Rx from Wellness)
Add P5P 50 mg/day (Kirkman Labs)

Call the office if you want to try nasal B12 or shots every 3 days. This is quite helpful and the labs indicated Matthew needs more B12.

Hair Test:
Your child shows a c shaped profile.
Your child shows displaced normal nutrients.
Your child shows Lithium depletion. Call the office and we will fax a prescription for lithium cream to Wellness to replace a normal nutrient.

We have a few ideas for you about metal avoidance: (these were marked for Matthew)
Antimony…in flame retardant – cover you child’s mattress in a hypoallergenic cover.
Arsenic…in chicken feed, so buy organic chicken. In treated lumber so wear shoes on decks and don’t allow your child to play under a deck. Avoid cigarette smoke.
Tin…in tin cans and in stannous fluoride.

All this stuff is like Greek to me...I've never heard of most of it (but why would I?)! It is very overwhelming and we'll be adding this stuff to the supplements Matthew is already taking. I would appreciate any comments/advice/warnings from other autism mommies that currently use/have tried these regimens. Thanks!!!


sam said...

I know this is an old post, but I just ran across it while I was researching doc recommendations (same DAN doctor in Richmond). Can you tell me if any of these supplements/prescriptions have been helping? I don't know where to start.

Cyndi said...

Sam, we have tried (and still use) all of those except the B12 shots...when we saw her in Feb. she didn't think it was necessary as Matthew is more verbal now but I might ask her about it again at our 6 month follow-up b/c other moms keep telling me about great results. I think all of the supps we are giving are helping. We had to cut the L-carnitine dose in half b/c it gave him loose stools but other than that no side effects and he seems to be steadily improving. Hope that helps!

sam said...

Thanks for such a quick reply. We will see the doctor on May 1 but have slowly been adding supplements/prescriptions (too much $$ to do all at once). She gave my son a presc. for a B-12 nasal spray. He has done well taking all pills but hates this spray. I'm not really sure what changes to look for in this. I feel like I am walking blind. Need to hit the internet and read up on all these. Thanks again and wish you well. BTW, you do have a real cutie.

Anna said...

hi, My 4 year old son also sees Dr. Megson. Did you figure out why she wanted you to use Lithium Cream. I can't remember for the life of me what she said it was for at our follow up. But she wants me to use it for my son as well.

Cyndi said...

Anna, one of his test results showed he was low on it. We still use the cream but very little b/c it is gritty and Matthew doesn't like the way it feels on his skin (we put it on his back at night). We told her that and she said we could stop using it when we ran out so we will. We got ours from Wellness and they said that's just the way it comes out and that some batches will be more gritty than others.

Anna said...

I am just trying to figure out what supplementing Lithium will help do. What is the purpose of Lithium in the body. I am kind of having a hard time finding good resources online, that make sense. I know that it can be use to treat bipolars as a mood stabalizer? Any thoughts as to what exactly it does for their body?

Cyndi said...

Anna, I researched it but that was months ago...I remember something about it being a nutrient that the body needs and Matthew had low levels of it so we needed to supplement. I don't think it's soemthing you HAVE to do but it shouldn't hurt...it's a very low concentration in a cream form. I also received a newsletter a few months ago and saw an article about the benefits of using lithium (although I think it was orally or by injection - not cream) but I never got around to reading it. I have piles of paerwork stacked on my dining room table...I'll try to find it and get back to you.

Just curious, what else did she prescribe? Is it similar to our long list?..anythign new/different?

Anonymous said...

I am glad your son recover, can you tell us if you but any diet like SCD. or do you give any enzymes and probiotic.
Thank you for sharing

Anonymous said...

Hi, I have a 4.5 yr old son with autism and we started with Dr. Megson in Feb.2009. Your son's results/treatment is very similar to mine. I would love to go over stuff you have done and tried. What worked, what didn't.
Thank you! krwren _ 0 at hot mail!

Cyndi said...

For Anonymous on April 7th:
Matthew has been on the GFCF diet since Dec 2007 and also takes enzymes and probiotics..along with a bunch of other supplements.

I am going out of town (to attend the DAN conference) and will do a new post on all his supps next week...I've been meaning to do that for a while and I think it will be helpful for others.

Take care,
:) Cyndi

Anonymous said...

Cyndi, can you share your supplement list? It is hard for me to work with an ex-husband and go through courts for medical consent for Christian's care, let alone get a DAN doctor. Been only giving him Vitc, Flaxeed oil with Omega 3s and B12 and on a gluten-free diet. His speech is very limited, though navigates well with computers and still has emotional outbursts, esp when he thinks he had upset somebody. Thanks for your time. I also welcome comments from any DAN-referred doctors/parents.

Christian's mom

Kathryn Cobb said...

I just came across this post and our son has been prescribed nearly the same protocol as listed above. Our son just turned 3 and has be gfcf for nearly 6 weeks. I was wondering when you began to see real changes? We aren't noticing much even though there's nothing he eats or drinks that doesn't have something spiked in it from the prescriptions. We keep waiting for the breakthrough but one has not come yet. Thanks for this post; as we read it we felt like we weren't alone in bio-med.