AutismWeb Forum

It is amazing how cytoflora has amazing reviews to bring on language but not even one person mentioned it anywhere in the top biomedical interventions.

I'm not familiar with cytolflora and have not tried it with my child so I don't know how well it works. However, I see that four people (sara, engagements, sleepingunderthestars, onerockatatime) mention cytoflora in their responses posted in this topic thread.

I most certainly did even went back to check. It is my second as LiverLife probably saved my son's life as much as he needed to talk he needed his liver fixed badly. This would be the only thing his Ped. did not fight me on they went to retest him (they called me) after he had started the LiverLife and his liver function was cut in half. They called me to do the test again this is the only thing they ever cared about. So as much as I love CytoFlora my son can't live without LiverLife but he can live without speaking. Thank Goodness I don't have to choose.

cytoflora is a new intervention, introduced at the end of last year. I think that's why it isn't on the first part of the thread; nobody had used it yet. We've all sure spent the year talking about it though!

My son began it today. We've had snowstorm after snowstorm in a city that usually gets no snow, and I did not what to start such an expensive supplement when I couldn't track progress properly. I'm excited about what I'll see. A good day already today....is that possible? Calm and very conversational. We'll see how it goes.

I have an older daughter, nt, who struggles on her slower days with mumbling. I am going to tuck some money away and try this on her as well. I wonder what all the language difficulties stem from that the cytoflora seems to be helping?

Amanda I actually believe I can answer you question. This is not per Tami actually it is what my Dr. who as I have stated before is not a DAN and well a little snobbish about it. He is a Neurologist who has been working with children who have Autism for 20 years. That being said I have nothing personally against DAN's just that I can't afford one and when this Dr. heard my son's symptoms he bumped a 2 year waiting list actually 700 other children. I would bet that my child might actually not be sicker then any other child with Autism but from being on this board I have know the right questions to ask and fought hard for many test so I was filled with info when I spoke to the nurse. He though is his first XMRV paitent but he did not know that when he took my son on. This is what he had to say. IT REDUCES THE INFLAIMATION IN THE BRAIN. Now how that would work is amazing and I really am into CytoFlora and understand how it works. It is a dead probiotic so it does not recolonize the good guys it carries the bad guys out of the gut ALIVE. Here is my thought on that. If you kill a bunch of bad guys well they spill thier insides though microscopic we all hear about what happens when children have die off. My thought is that it leaves a mess and we then have to use AC to clean it up. With CytoFlora it carries them out alive and gets rid of them and allows the good guys a nice clean place to grow. As we all the the gut is connected to the brain and cleaning up the gut is one of the best ways to clear up the fog. Funny thing happen today on the inflamation side my older son had a really strange virus that was instantly cleared up with motrin. I woke up with it this morning and one hour after taking motrin I was on my feet and cleaning the entire house (hummm maybe I have some inflaimation) well then my little guy started to act sick and got warm and I gave him so motrin within an hour he was literally quiet as a mouse in all places Walmart and let me tell you dang it was like Christmas today. He asked for a car in the toy section so I bought him one. Hope that all made sense.

Hey folks. I haven't posted in a while, but wanted to throw out a few things from our experience.

a) Casein free/Gluten Free (he largely stopped SIB ... injuring himself...). We found this when my son was around 4.
b) MB-12 (we are on daily shots...)
c) mHBOT & standard HBOT (first intervention that we saw pushed the needle the other way). HBOT is grueling and expensive. IN order for it to work (and on this we agree with Dr N's protocal), you have to have significant dives in a short period of time. So it's all in for about 5 weeks every several months.

My problem is that I think I'm less precise on his other treatments, and have to turn to HBOT in order to keep pushing him along. Otherwise, he tends after a few months gradually to go back in his reptitive behavoir and OCD.

d) larger protocal of supplements, including Omegas, probiotics, enzymes have had positive results.

My son is 8 now. We have been on this road for about 4 years now (and started with our Dan Dr about 3 years ago).


Peace,
Adam

Updated list:

1. One-to-one education program as a youngster, followed by tutoring and social skills groups now that he's older.

2. GFCF diet, no dyes, no preservatives, and low sugar.

3. Vitamins, supplements, fish oil and probiotics

4. Creating and following individualized behavior plans (using an ABA-type antecedent, behavior, consequence)

5. Inclusion in regular classes and regular sports with adequate supervision, which was gradually faded and then eliminated when he could be on his own.

The list of what didn't work is longer.

please post what didn't work, too! We can be objective about it, knowing that what doesn't work for some might work for others. I would like to see a pattern, though. If ten people say one thing is a complete waste, I would like to know about it.

1)Digestive Enzymes with every meal
2)Feingold Diet
3) Kindergarten with typical kids this year. Huge for him..He finally has friends and playdates which has never happened. He needed that example on how to act and play. He was in a special ed preschool last year which was a disaster for all of us...
4)MB12 shots
5)we are on week 3 of the listening program and we are seeing really good things with it. Asking tons of why questions lately and finally making his letters correctly. sounds small but all year would make his b the wrong way (according to his OT) and this week finally made it right..
6)extra protein in all meals helps he gets really cranky if he has too much sugar/carbs even in fruit so we have to make a real effort to balance his meals.
7) Liver life

I hesitated to post mine because I'm always trying new things, but here goes:


1. Cod Liver Oil (my son stopped looking at things out the corner of his eye all the time- was a pretty dramatic change. Also helped rid the remainder of his eczema.) I think the brand matters, we use Garden of Life.
2. Raw milk (His langauge had decreased to almost nothing and came back better than ever within a couple weeks) Now we mostly drink it as kefir, but initial progress wasn't even with cultured milk.
3. nutrient dense organic diet (We always did this and I think it kept his head above water without too many medical problems)
4. ABA therapy
5. Enzymedica enzymes (decreased chewing shirt and slowed down his constant eating)
6. Dynavox communication device (helping to increase his language)

It's hard to put these in order of effectiveness, so they aren't necessarily. Runner's up are kombucha, the herbs valerian and bacopa, r-lipoic acid, good ole vitamin C and having a sister to play with. Some of those might make it to the top 6 eventually. Still navigating.

Can anyone else post theirs or update? This thread is really helpful.

Already thought of something else: Homeschooling. We did it only for a few months so far and I don't know if we're going to continue, but with the one on one time with him I was able to get a handle on behaviors, teach him life skills, understand him better, take him to public places, bond, and get him to talk more, even if it's just to me. I was also able to keep better tabs on biomed and make sure he got his supplements. It didn't do much for academics, but really worth it. Fits somewhere in top 6.

Here are some idea's that might not be considered interventions so to speak but very useful info for doing and finding interventions.
Look for GRANTS they are out there.
http://autism.about.com/od/financialres ... autism.htm
http://www.cerner.com/firsthand/
http://act-today.org/wp-content/uploads ... l%202009(2).pdf
http://www.nationalautismassociation.or ... nghand.php


http://gfcf-diet.talkaboutcuringautism. ... -list.html helpful food link
http://gfcfdiet.com/NewpageDirectory6.htm

http://www.autismangelspurse.com/About% ... 0Purse.htm
This one rocks but she is a one person show so it can be difficult also for those in better money situations a good place to give money even if only $5 to help her ship. She sent me a box that I can't even begin to tell you the amount of money it was worth it was insane.

I highly recommend getting in with Gen Rescue this is the newest news from them but I have to tell you they sent me gift cards for Walmart for my kids they had so many request for Christmas this year they had to scale it back to just the children which I did not mind in the least but they have an awsome new program for ppl just starting. You all know I am a BioRay fan so that is how I know this but here is the link for a story on what they did. Also I got a Rescue Angel and she has been wonderful.

http://www.bioraynaturaldetox.com/artic ... amily.aspx

I wish they would start a grants or into thread. There is so must useful and helpful resources out there for those of us struggling though I think we all are.

the best interventions here i think are
- trienza with every meal, my son had never had formed bowels his whole life and this has helped tremendously
- dmg helped to jump start his language, he was having speech therapy with not alot sucess and this really him to be alert and understand things better
- the next intervantion is OLE, his speech improved from just labelling to putting words together, BUT this was the same time he started watching baby bumble bee vidoes so this could have contributed too, and we also started candex this same week. his speech has been getting better since then although his intensive speech therapy finished the same week. he now will be seeing the SALT once every 3 months but we arent that bothered by the cut in services as he seems to be doing well with biomed.
- fish oils are helping too and i did not realise this untill i switched from efalex to proefa and had a regression with unpleasant behaviours. we went back to efalex after taking a short break from all fish oils and during this time we had a decrease in aquired speech.
- gfcf diet helped to lift the fog and made his less withdrawn.

we also give spectrum complete and klaire therbiotic plus antifungals and i think they are all helping in bits but didnt get any wows with these. And we have started ac chelation today, nothing to report yet fingers crossed it goes well.

1. Cod liver oil, my kid started to understand some language with it
2. OLE - he acquired dozens of words "overnight". I then stopped OLE and reintroduced it couple of months later, and the same thing hapened - language took off again
3. Speech therapy, two hrs three times a week
4. Vinpocetine, some language increase, but it tends to wear off, so I stopped it

What didn't work for us:
Digestive enzimes (Peptizide, Trienza)
L-carnosine
ALA chelation (no changes after app. 20 rounds)

Well, we are extremely new to biomed but we've had some really good success so far. I haven't tried much but here goes:

1) Intunive: A medication, I'm sorry but he went from horribly explosive and attacking people to sweet and calm with few tantrums.
2) DMG: Instant speech where before he had none. He literally began to use some single words within about 24 hours and has begun some 2 word phrases. Made him very hyper, though.
3) Folic Acid: Added this to calm down the hyper from DMG and his speech got more clear. I realized he's been saying a lot "mumbling" but it wasn't clear enough to understand until now.
4) Sugar-free diet: More calm and focused, much less defiance
4) Daily speech with me at home using flash cards and labeling (he knows about 200 cards now and says half clearly with the other half close approximations).
6) Solaray yeast cleanse: A few days ago. Wow, now I know what yeast is! Yuck.
7) (Can I have seven?) Omega 3 Fish Oil/Melatonin: Allowed him to come off 4 years of Seroquel to sleep at night. He hadn't slept unmedicated in that long and he literally fought it even then until he was "knocked out".
What about an 8? GABA. Just started but already less vocal stims and trying to stand on his head. We're still trying to figure out dosing and timing but it definitely works for him in a good way and great with the DMG at the same time to balance out the hyper!

What didn't work:
1) Ginkgo Biloba: Made him crazy and wild, he could not sit still and recently acquired language was gone on the days he took this. I finally researched the GABA/Glutamate stuff. I'm learning!
2) Nasal B-12: Had a short run with this and it did nothing. He wasn't an instant responder like some.
3) Oral B-12: Same as above. In fact, both seemed to make the DMG less effective for speech oddly.
4) Enhansa: Nothing either way. No yellow poo, no yeast die off, no nothing. We got up to 600 mg with still nothing and decided to try Solaray. We had nasty yellow poo the next morning that smelled disgusting!
5) Years and years of the doctors treating him with medications (Risperdal, Adderall, Concerta, Focalin, Methyline, Clonidine, Seroquel, Valium)! They only made him worse and more withdrawn.
6) Peptizide and Culturelle: At least it didn't eliminate any yeast. Nothing happened. We thought he didn't have any until we added the Solaray recently.