Need DAN/Biomed Doctor near ton, SC

[Guest guest]

Hi Everyone,

My 3.2 year old (34 lb) daughter with ASD has been seeing Dr. Lieberman in North

ton for biomedical treatment. She is a fraternal twin and was always

behind her sister with milestones from birth. After receiving her MMR and

Varicella vaccines at 16 months old she started pulling her hair out, banging

her head, screaming if anyone came near her, lost all eye contact, stopped

making facial expressions, and had no babbling or words(she already hadn't

spoken for about six months before this). Her stools became loose and she would

develop strange rashes all over her body. She would wake up for two-four hours

in the middle of the night laughing and bouncing in her crib (yet wouldn't laugh

or smile during the daytime). You could be alone with her in an empty room for

hours and she didn't know you were there. She wasn't walking either and was

diagnosed afterwards with hypotonia.

She started seeing Dr. Lieberman when she was 23 months old. He put her on

GFCFSF diet where we noticed an improvement in focus and eye contact. He then

had us add Bio Mulsion Forte Vitamin D drops (6,000 IU) daily, Vitaspectrum

Multivitamin Powder (1/2 scoopy daily), Dr Sears Omega 3 DHA liquid (1/2 tsp

daily), Nizoral (1/4 tab daily), Pecta Sol C Modified Citrus Pectin (as a

chelator, 1 scoop 2x daily), Ther-biotic Complete probiotic (25 billion CFUs

daily), and methyl b-12 injections every other day. After finding out about

this group I also added in 150 mg of Olive Leaf Extract (2x daily)where we saw a

little improvement but then it tapered off after a few months (we stopped giving

her Valtrex in exchange for this a month ago). She now takes Valtrex (Acyclovir

250 mg 2x daily). After reading some comments here I realize I need to up that

to 250mg 3x daily,

Fourteen months after starting with biomed, she is walking (she still has

pronated ankles and wears IFO braces). She sleeps through the night. Her BMs

are solid. Her hair pulling only happens when she's upset along with

head-banging. She smiles and seeks attention. She answers to her name 80% of

the time. Her eye contact is better but it's not consistent. Therapists have

commented that she has absence seizures (will space out and stare) but these

have gone down from 30-40 times a day to about 5-8. We haven't been able to

have an MRI or EEG done b/c of insurance but are applying for medicaid. She has

chronic ear infections in both ears (these began after her MMR and Varicella

vaccinations) and she has tubes in both ears. Antibiotics do not clear her ears

up (I stopped giving antibiotics to her now). Her gait has improved but she

still has a little of a " drunken " thing going on and seems off balance (could

this be due to her ears or something in her diet?). ENTs give us no answers.

I am still concerned about her speech and socialization. As much as she has

improved over the last year, I wonder why it is not consistent. She has had

received extensive ST, OT, PT, and ABA. She will say a new word then never say

it again. She will look at me every few months and say " Mama! " and then I won't

hear it for another few months. She is oblivious to her twin and goes off in a

corner at daycare to be alone. She tolerates others better than she did a year

ago but still prefers being alone and makes no effort to communicate or

socialize.

At the last few appts with Dr. Lieberman, I have pushed for new things to try

(my daughter has been on the same regimen other than the Valtrex for a year). I

have asked about DMSA and glutothione and he is very set on what he has her on

and said it will take time.

I am amazed at everything I've read on this group. You are all so knowledgable.

I am wondering if any of you know a DAN/biomed doctor in the Carolinas or

surrounding states (I would be willing to drive 6 hours away). I think at this

point my daughter needs more agressive treatment.

Thank you for any advice!

Nikki

[Guest guest]

Many of us travel long distances to work with our doc. For example, we live in Va and see a DAN! doc in Florida. Not sure how close Dr. Rossignol is to you, but here is his contact info. We love him! www.icdrc.org Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of PeacemomSent: Sunday, September 25, 2011 7:48 PMTo: mb12valtrex Subject: Need DAN/Biomed Doctor near ton, SC Hi Everyone,My 3.2 year old (34 lb) daughter with ASD has been seeing Dr. Lieberman in North ton for biomedical treatment. She is a fraternal twin and was always behind her sister with milestones from birth. After receiving her MMR and Varicella vaccines at 16 months old she started pulling her hair out, banging her head, screaming if anyone came near her, lost all eye contact, stopped making facial expressions, and had no babbling or words(she already hadn't spoken for about six months before this). Her stools became loose and she would develop strange rashes all over her body. She would wake up for two-four hours in the middle of the night laughing and bouncing in her crib (yet wouldn't laugh or smile during the daytime). You could be alone with her in an empty room for hours and she didn't know you were there. She wasn't walking either and was diagnosed afterwards with hypotonia. She started seeing Dr. Lieberman when she was 23 months old. He put her on GFCFSF diet where we noticed an improvement in focus and eye contact. He then had us add Bio Mulsion Forte Vitamin D drops (6,000 IU) daily, Vitaspectrum Multivitamin Powder (1/2 scoopy daily), Dr Sears Omega 3 DHA liquid (1/2 tsp daily), Nizoral (1/4 tab daily), Pecta Sol C Modified Citrus Pectin (as a chelator, 1 scoop 2x daily), Ther-biotic Complete probiotic (25 billion CFUs daily), and methyl b-12 injections every other day. After finding out about this group I also added in 150 mg of Olive Leaf Extract (2x daily)where we saw a little improvement but then it tapered off after a few months (we stopped giving her Valtrex in exchange for this a month ago). She now takes Valtrex (Acyclovir 250 mg 2x daily). After reading some comments here I realize I need to up that to 250mg 3x daily,Fourteen months after starting with biomed, she is walking (she still has pronated ankles and wears IFO braces). She sleeps through the night. Her BMs are solid. Her hair pulling only happens when she's upset along with head-banging. She smiles and seeks attention. She answers to her name 80% of the time. Her eye contact is better but it's not consistent. Therapists have commented that she has absence seizures (will space out and stare) but these have gone down from 30-40 times a day to about 5-8. We haven't been able to have an MRI or EEG done b/c of insurance but are applying for medicaid. She has chronic ear infections in both ears (these began after her MMR and Varicella vaccinations) and she has tubes in both ears. Antibiotics do not clear her ears up (I stopped giving antibiotics to her now). Her gait has improved but she still has a little of a " drunken " thing going on and seems off balance (could this be due to her ears or something in her diet?). ENTs give us no answers.I am still concerned about her speech and socialization. As much as she has improved over the last year, I wonder why it is not consistent. She has had received extensive ST, OT, PT, and ABA. She will say a new word then never say it again. She will look at me every few months and say " Mama! " and then I won't hear it for another few months. She is oblivious to her twin and goes off in a corner at daycare to be alone. She tolerates others better than she did a year ago but still prefers being alone and makes no effort to communicate or socialize. At the last few appts with Dr. Lieberman, I have pushed for new things to try (my daughter has been on the same regimen other than the Valtrex for a year). I have asked about DMSA and glutothione and he is very set on what he has her on and said it will take time. I am amazed at everything I've read on this group. You are all so knowledgable. I am wondering if any of you know a DAN/biomed doctor in the Carolinas or surrounding states (I would be willing to drive 6 hours away). I think at this point my daughter needs more agressive treatment. Thank you for any advice! Nikki