Any Dr. Rossignol patients ?

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

sunriselady
Posts: 6
Joined: Wed Apr 30, 2014 9:09 am

Any Dr. Rossignol patients ?

Postby sunriselady » Thu Sep 04, 2014 11:14 am

Hi fellow parents:
I'm relatively new posting here. But read the forum all the time.

We, myson and I, have alraedy been on the biomed path since my son was about
5 years old (we do methyl b12 shots twice weekly),
probiotics (VSL #3) and supplements/vitamins. But now he is 10 years old and language
comprehension is still about 3 years behind, still has little appetite no matter how many
homemade tasty meals i cook and his vocal stims persist,
as well as his OCD of seeking chin mouth pressure against my forehead. Yes I know it sounds odd,
but this is something that eludes and baffles me and I don't know what to give him to slow this down.
When he sees me at the end of the day, first thing he mumbles is --mommy can i use your forehead please :)
and then he proceeds to press his chin firmly against my forehead. Kinda looks like he's giving me a kiss on
the forehead. It gets so bad sometimes that even if we are in a restaurant, he will seek this pressure and
does not care who is around him ! I guess this is an OCD ?

i decided to switch D.A.N (dan doctors) because I feel we reached a limit with previous doctor.
We went to our first appointment with new doctor, Dr. Dan Rossignol in Melbourne, Florida.
He's got two offices though, another one in California, too. The cost is high to see him
and Im doing this alone financially speaking. But I would sacrifice anything for
the betterment of my little guy.

We are waiting on lab results at this point. First appt was alot of me talking and him
writing all of the symptoms, my concerns observations and supplements he is on currently, etc.
So all I could tell is he is a good listener :)

So, I really wanted to ask if there are any other parents here that have received treatment
for their little ones with Dr. Rossignol ??
Any feedback is greatly appreciated.
god bless.

Angie1211
Posts: 2
Joined: Thu Sep 04, 2014 6:37 pm

Re: Any Dr. Rossignol patients ?

Postby Angie1211 » Fri Sep 05, 2014 10:28 pm

Yes, I am!! I'm so happy to share info with you.
I live in CA so, I go to the office in irvine, CA.
My 3.5 month daughter, low muscle tone speech delay, been biomed since she was 3. We were just straight to Dr.R because some of my friends who have autism kids have been there and they are definitely managed recovery and now, they go to mainstream elementary or kinder.
(Actually theyr were very low function autism, sensory, sleep trouble, tantrum, picky eater, head banging ans screaming all the time)

My daughter do B12 shot everyday(3 times a week for the first 2 month), Carnosine 200mg, leucovorin 3 times a day, omega 3, l-carnitine 200mg a day, probiotic, sonic cholesterol, iron 5ml a day,
Calcium 500mg a day, namenda 2ml a day.
Also, she took alinia and nystatin for 3 weeks and her tantrum was gone.

What the big improvement so far is speech and gross motor skills. She can ride the Kick scooter and tricycle now and her balance is getting better. About speech, I asked Dr. R to push her and he gave some prescription which are alinia, nystatin, namenda. Her speech is exploded and now she can say alphabet from backwards too! She used to say 3 vocabularies which were mama, dada, yes, no...

I hope these info could help you!

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Any Dr. Rossignol patients ?

Postby FatherOf2 » Sat Sep 06, 2014 1:44 pm

Angie1211, did your daughter have diarrhea before starting Alinia or any other signs of infection?

Angie1211
Posts: 2
Joined: Thu Sep 04, 2014 6:37 pm

Re: Any Dr. Rossignol patients ?

Postby Angie1211 » Sun Sep 07, 2014 11:23 am

Yes, she had diahhriia for 3 days but after that, her feces was back to normal.
She usually has loose stool for a few days if she tries to take now meds or supplement.

sunriselady
Posts: 6
Joined: Wed Apr 30, 2014 9:09 am

Our followup with Dr. Rossignol ....

Postby sunriselady » Sun Sep 07, 2014 12:45 pm

Thank you so much fatherof2 and angie1211 for your prompt feedback. It's so easy to feel alone in this long journey and to hear back so quickly from other parents going thru this similar path, feels not just supportive and helpful, but makes me feel a sense of parent comraderie :)

Our 2nd appt and followup to review lab results was Friday.
It a nutshell we had multiple labs done.
Abnormalities found in:

OATS lab:
HPHPA 350 (high): This is an indication of clostridia genus is high.
The doc prescribed FLAGYL to treat this for a few weeks. I have to run out an get this filled first thing tomorrow.

CDSA stool test:
Candida Albicans (1+).
For this, doc prescribed NYSTATIN also to give for 3 weeks.

No ova/parasites.

WAs suprised he has no parasites, as my mother kept swearing he would, cause he has constipation and low appetite.
But according to CDSA he does not.

Doc told me to continue with the VSL #3, as we always have. To populate with beneficial bacteria. Funny thing is
he has always been on this strong probiotic (VSL) and yet his markers for clostridia (high) and yeast(low-moderate),
came back abnormal....so frustrating. I mean maybe I've been using the wrong probiotic all these years!!!
VSL is sooooo expensive, I can barely afford. But I'm hopeful this FLAGYL and NYSTATIN WILL kill the clostridia
finally?

Well this is the lastest on what we are doing after followup appointment with Rossignol.
Any bad, good or ugly experience with these two meds? I was so traumatized with my son's chronic ear infections
being treated with back-to-back antibiotics back when his immune system was so weak (age 2-3yrs), I strongly
am against antibiotics cause they caused him a distended belly, stimming and I strongly feel back then this
contributed to his regression into autism. But now that he is 10, I'm hoping he is strong enough to weather
3 weeks of FLAGYL. Besides, the doc told me that clostridia is HARD TO KILL. And this is the protocol used.
So I will try it and see if it helps the stims, vocal stims, pacing and head pressure-seeking that has become
almost an ocd with him.

Wish me luck......

sunriselady
Posts: 6
Joined: Wed Apr 30, 2014 9:09 am

forgot to mention, anti-strep antibodies were high

Postby sunriselady » Sun Sep 07, 2014 1:00 pm

Lab results included high values for:
anti-streptolysin o (302)
and
dnase b antibody (540).

I asked him about these and he said it indicates previous exposures in the last several months to strep.
I toldhim that he hasn't been sick in almost a year? Oh well, so that was odd in my mind. Can a child get strep with no symptoms, no fever and he said yes.

Do we have to treat it? He said, that if the antibodies themselves, not the strep virus, but the antibodies cause the
child sudden onset of tics/stims out of nowhere, this can be indication of pandas. And pandas treatment protocol
requires long-term antibiotic treatment and I said I was not interested in any long-term antibiotics. Sorry but antibiotics
I believe really hurt my son's gut balance back when he was a toddler, caused him all sorts of problems. Never used
an antibiotic ever since. So I fear long-term antibiotics bigtime. This time around I'm caving in since he's older (age 10) and
it seems his immune system may be able to handle it....only cause labs revealed clostridia needs to be addressed.

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Any Dr. Rossignol patients ?

Postby FatherOf2 » Sun Sep 07, 2014 2:56 pm

So, HPHPA = 350 (I think the max normal is 220 in GPL MOAT tests)
What are his Arabinose levels?
Just FYI, VSL #3 contains Streptococcus thermophilus (http://www.vsl3.com/discover.asp). So, your son has been exposed to strep. Streptococcus thermophilus has been widely used in the dairy industry to make cheese and yougurt. But some ASD kids are known to be intollerant to it, which is probably manifested in the high levels of those dnase antibodies. I am not an expert on this, and you should talk to Dr. Rossignol. Perhaps trying a different probiotic brand without Streptococcus thermophilus is a good idea (you probably want to stop giving yogurt too). Culterelle is a good one. Klaire's Ther-Biotic Chewable is what we use. If you want to give a lot of CFU's like in VSL #3, try Ultimate Flora Critical Colon 80 Billion, which is the highest count I can find in local CA stores. You should also make sure you give probiotics on empty stomach, most parents give right before bed.

Flagyl + Nystatin is a common treatment. We didn't see much improvements from it. In fact, we ended up with more yeast than before. I don't like antibiotics or anti-fungals myself. Gut flora is a tricky thing and can be easily imbalanced with meds, but in your case, because of high HPHPA, you may need antibiotics. By the way, did you follow the urine collection instructions for OAT: no juices or fruits within 24hrs, collect the first urine in the morning, freeze until shipped by FedEx with a cold gel pack? The test can be highly inaccurate if these instructions are not followed.

sunriselady
Posts: 6
Joined: Wed Apr 30, 2014 9:09 am

OATS high values....

Postby sunriselady » Mon Sep 08, 2014 11:22 am

Thanks fatherof2 for the suggestions of probiotics.
My son's been on VSL for a while now. And still his stool marker for Candida Albicans = (+1).
Anyways....the highest values from his OAT lab done thru Great Plains Lab are:

Arabinose = 148 (should be < 50)
HPHPA = 350 (should be < 220)
2-Hydroxyhippuric = 3.5 (should be < 1.2)

You'd think its doing something? Maybe it's long over due that I change his probiotic.
I have to finish up the box of VSL #3, but I will add in Culturelle.
I think I must administer or time, these probiotics away from the NYSTATIN.
Cant remember wwhere I read that probiotics should not be given, same time as
a prescription antifungal?

How I'm going to do this with a fulltime job, him in school and only 24 hours in a day,
.......who knows. I'm already giving him 5 vitamins before school, and now added 2 pills more
this morning for nystatin/flagyl.
And he never eats breakfast ! Only a cup of lemonade, to which i add a spoon of rice protein
powder and "make" him drink it. So pills go in with not such an empty stomach.
It's so hard to have a picky eater.

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Any Dr. Rossignol patients ?

Postby FatherOf2 » Mon Sep 08, 2014 12:51 pm

Our last MOAT test results came back better than a year ago, when we treated with Nystatin and Flagyl, but this time we didn't do anything except probiotics:
Arabinose = 100 (should be < 50)
HPHPA = 197 (should be < 220)
2-Hydroxyhippuric = 5.4 (should be < 1.2)

Last year, after Nystatin/Flagyl treatment:
Arabinose = 633 (should be < 50)
HPHPA = 166 (should be < 220)
2-Hydroxyhippuric = 21 (should be < 1.2)

Last year, before Nystatin/Flagyl treatment:
Arabinose = 201 (should be < 50)
HPHPA = 220 (should be < 220)
2-Hydroxyhippuric = 0.34 (should be < 1.2)

So, you can see that Nystatin/Flagyl did somewhat OK for bacteria except for 2-Hydroxyhippuric, but completely messed up yeast markers. Probitotics work slower than Nystatin/Flagyl, but will crowd out bad bacteria and yeast over time.

Our supplementation schedule looks like this:

First thing in the morning (6-6:30am) - Ther-Biotic tablet by Klaire (25bln) + Culterelle tablet (10bln)
7-7:30am - Juice with all supplements & meds (Tenex, Galantamine, Leucovorin) + breakfast
12-12:30pm - lunch (at school)
2-4pm - another Ther-Biotic tablet by Klaire (25bln)
6-6:30pm - dinner with meds mixed in (Tenex + Galantamine)
7:30-8pm - Ther-Biotic tablet by Klaire (25bln) + Culterelle tablet (10bln)
8:30pm - Going to bed

Chewable probiotics are great because you can give them anytime without any food. Just make sure they don't contain sugar or artificial sweeteners. Xylotol is OK, and in fact helps GI health.
Last edited by FatherOf2 on Mon Sep 08, 2014 2:33 pm, edited 1 time in total.

kulkulkan
Posts: 2075
Joined: Tue Mar 13, 2012 1:37 pm

Re: Any Dr. Rossignol patients ?

Postby kulkulkan » Mon Sep 08, 2014 1:46 pm

Fatherof2, which is the one that you removed, saw some regression and then re-added. Was it Therbiotic or Culturelle?

FatherOf2
Posts: 1587
Joined: Mon Mar 11, 2013 1:37 am

Re: Any Dr. Rossignol patients ?

Postby FatherOf2 » Mon Sep 08, 2014 2:28 pm

kulkulkan wrote:Fatherof2, which is the one that you removed, saw some regression and then re-added. Was it Therbiotic or Culturelle?

ther-biotic. culturelle was added 1 week ago.

yesig
Posts: 1
Joined: Tue Sep 27, 2016 11:27 am

Re: Any Dr. Rossignol patients ?

Postby yesig » Tue Sep 27, 2016 12:18 pm

Hello there,

Thinking of taking my 21 month old son to Dr.Rossignol. Just wondering how your children are doing now. My son has been going to a DAN dr, but at times i just feel so lost, and hopeless. He has been on trace minerals and iodine drops for a month now along with oral Nystatin. The GFCF diet has been going good and once we took the diary away we noticed more eye contact which gave me faith. Just last week he was given methyl b12 injections and we started the first on Friday. Saturday morning he woke up with a rash that started on his back and gradually spread to his stomach face and thighs. Alot has been going on last week that i am not really sure it was the b12. He ended up in ER due to a fever of 104 after xrays, bloodwork, and test all they told was that it was a virus. His fever continued for 3 days and then stopped. after our visit to urgent care Sunday dr said the rash might be due to the virus. We will be giving him his second b12 today , and i am hoping it's not the cause of the previous rash. But i was just wondering how your children are doing. Dr.Rossignol is pricey so i am saving up to set up an appointment with him, hopefully soon.

milobabies
Posts: 1
Joined: Thu Mar 09, 2017 1:13 am

Re: Any Dr. Rossignol patients ?

Postby milobabies » Thu Mar 09, 2017 1:22 am

Hi. I know this is an old thread but I was just wondering if any moms/dads out there have been pleased their experience with Dr. Dan Rossignol? Hoping to hear from old patients who have had some success with their children's progress/recovery from autism. I am a mom of a 2 year old boy diagnosed with ASD and will be meeting with Dr. Rossignol for the first time. If you would be so kind to share your thoughts, I would greatly appreciate.

Shriman
Posts: 1
Joined: Fri Feb 24, 2017 9:13 pm

Re: Any Dr. Rossignol patients ?

Postby Shriman » Fri Mar 17, 2017 7:16 pm

Bump.

I want to consult rossignol. For my son 3 y old .


Return to “Diet and Biomedical Treatments for Autism”