I just really need some help/advice

[mmiglio]

Thanks again to everyone for the info. LLM I am very interested in methylation. I read the link you mentioned. There is no way I am smart enough, patient enough, observant enough, "present" enough to do all this.

 

Seven weeks on antibiotics and I couldn't even tell the doctor if there was an improvement in her symptoms. And I couldn't tell what was her "normal" (or what we had come to know as normal behavior) from herxing.

 

What happens to the kids who don't have parents who can figure all this out? Do they just never get better? Because I'm seriously afraid I will never figure this out.

[LNN]

Here are a few easy reads on methylation - http://www.easytolovebut.com/?p=2782 and http://autismnti.com/images/Website-_Yasko_Education.pdf

Take it slow and it eventually starts to make sense.

 

The first step is ordering a 23andMe kit (www.23andMe.com) for $99 and have her spit into a tube. A few weeks later, you'll have her genetic info and can start to figure out what supplements might help her and which ones would add to her struggles. As Rowing Mom says, I'm a bit of a methylation fanatic. It maks a night and day difference for my kids moods and has kept them off of medications. I'm not on the forum often anymore but PM me and I'll get an email of you have questions.

 

Rowing mom - I thought you were kicking your forum habit?! I'll send you a PM this afternoon so we can catch up

[nicklemama]

It could very well be a supplement. My son reacted poorly to transfer factor. Bartonella causes raging too.

[puppydog]

Inositol flared it for us as did prednisone but tylenol or aspirin helped. Can someone tell me more about herxing?

[WorriedDADNMOM]

mmiglio, I want to 2nd what llm is talking about...methylation. I think for us.....the most profound part was ALL THE MANY WAYS our DD improved as it pertained to OCD, tics, mood, compassion, empathy, happiness, behavior(Opp Defiance) conflict resolution, ADHD and focus......in addition to muscle tone and growth. Literally...... Ever major aspect of her life improved.....almost to the point of complete normalcy where CBT or counseling were not needed. this is slowly becoming our new normal. Easy...NO easier, ABSOLUTELY.

 

We see leading DAN Integrative Pandas pedi in Ohio. We really chose the "natural" route. With that said.....Long term zith would be great. However, for us.....all the supplements have been huge and each one in their own way are a part of the healing and dealing with our kiddos. PM me if you want more specifics.

[LNN]

Inositol flared it for us as did prednisone but tylenol or aspirin helped. Can someone tell me more about herxing?

PLEASE do not use asprin with a child. Tylenol should also be avoided because tylenol depletes glutathione - the body's master antioxidant/toxin remover. Ibuprofen (Motrin) is what most Pandas parents use to help with inflammation and it can bring significant relief. But only ibuprofen.

 

You can wikipedia "Herxheimer" for the specific explanation of a herx. It's generally used as slang in the lyme and PANS world to reflect a "getting worse before you get better" situation where you start a treatment that sort of works "too well" and the die off toxins from the bacteria. virus, fungus or parasite make you feel worse than beofre you started the treatment. So you'll hear the mantra "detox, detox, detox" which means - add supplements, strategies to support the body while it herxes so you can get over the hump and start to feel better w/o having to stop treatment,

 

Detox can include supplements like milk thistle, n-acetylcysteine (NAC), alpha lipoic acid, glutathione, epsom salt baths - but all of these are high in sulfur and people who have mutations on a gene called CBS can't handle the sulfur. Instead of detoxing, these things overwhelm a CBS+ person's garbage elimination pathway (called the transsulfuration pathway). So for people with CBS+ issues, the mantra instead becomes "anti-inflammatory, anti-inflammatory, anti-inflammatory".

 

You find out if you have CBS issues and other genetic issues by doing a spit test called 23andMe and using methylation strategies to work around your road blocks. That's why some of us have seen incredible results from changing supplements based on methylation info. Others don't see the same degree of miracle, but when you're searching for ways to help your child and other things haven't worked, it's a good place to look for clues.

[4Nikki]

@llm, Can you elaborate on the why non-use of Aspirin? What does child mean? I'm a little older and growing up Aspirin was the goto for just about everything. Now everyone is afraid of it. My pop's was on a daily dose of baby aspirin as a partial blood thinner and the only side warning was it could cause bleeding if used in higher doses in some people. I kind of liken it to the non-use of msg with food.

 

DD's onset was November of 2012 and she raged continually for 4 months, until she got a dose of Amoxicillin. Then after another 2 months the rages came back. We found 1000 mg of Ibuprofen helped reduce the intensity from about a level 5 to a level 1 or abated the episode. Verbal Tics were a warning sign that brain fog was imminent, followed by an intense rage. We felt we relied on the Ibuprofen too much and started to limit it. Late 2013, we discovered just 200 mg Advil with 30 mg Pseudoephedrine worked even better especially with the rage. It kept her form zoning out, but again we relied on it too much. As much as 2 and 3 times a day. DD's Thyroid numbers and liver numbers were affected, Turns out her Autoimmune system was starting to attack her other organs because of the use of the Advil. Once we stopped it, her numbers starting turning back to normal. Now we use it only sparingly but I found just 1 baby aspirin 87 mg (150 lbs) keeps her good for half the day when she is flaring. Again we limit it's use to only when she starts with the symptoms.

 

DD has a new Pandas Dr. This month that is introducing us to methylation. She stated with a Probiotic, Magnolia, Curcumin, Boswellia, Wobenzyme-PS, Phytocort, Ashwaganda. It's all 50% over my head and I still have to absorb what is going on.

[LNN]

Doctors do not recommend giving children aspirin because of the risk of Reye's syndrome. Reye's syndrome has shown up in children who have taken aspirin when battling an infection. It is a disease that can affect the brain (causing swelling, seizures, and coma), the liver (deterioration), and blood-clotting issues.

 

But if your DD is 150 lbs, then you should check with your doctor on whether asprin is appropriate for her. I'm not trying to give medical advice.

 

Ibuprofen and advil are fine for kids if given at the correct dosage for your child's body weight. Pseudophedrine is basically "speed" and is no longer sold OTC because teens were using it to make a home-grown version of speed. So now it's kept behind the pharmacy counter and it's sale is closely monitored/restricted. I can understand why it kept your DD from zoning out but it's probably a good thing you don't use it anymore. Even for people who have no autoimmune issues, taking any NSAID multiple times/day long term would put a strain on the liver. I'm glad to hear her liver and thyroid have returned to normal.

 

As for methylation, when I use the term, I'm talking about individualized methylation, using specific supplements based on your genetics. Everyone's body methylates - it's a process that occurs in every cell in your body. But since decoding the human genome and since the affordable availability of testing your own genetics, a new field called epigenetics has emerged. It looks at your individual genetic issues and uses medications or supplements or diet to work around those individual roadblocks. I've used a few of the supplements you've listed, but if you're using them without knowing your DD's genetics, then it's not what I'm refering to when I talk about the topic. For example, I tried curcumin for my kids and it made my son rage - maybe because curcumin inhibits the MAO-A gene and my son's MAO-A gene is already impaired. MAO-A regulates how quickly your body degrades epinephrine and dopamine. So inhibiting that process further left him with too much of these neurotransmitters in his system, which made him angry. Curcumin was a no go for my DD as well, but probably because it's high is sulfur and due to a variation in her CBS gene, she struggles with breaking down sulfurs. So it's their genetics that drive my decisions to use or not use a supplement. That's what I'm talking about when I talk about using methylation. If you're going to pursue methylation strategies, then I'd recommend using one of the testing companies (e.g. 23andMe) to guide your and your doctor's decisions.

[4Nikki]

Thank you for the reply, it helps. Back in 2013, DD's Neurology Doc said he prescribes Pseudophedrine to some of his ADHD patients. He said when you understand how it works it makes sense, because the obvious thought was why would anyone give speed to a raging child.

 

When we told him about the advil cold and sinus with the 30 mg of Pseudophedrine, he tried 60 mg of the Pseudophedrine on DD but it didn't work. Only the Advil with of Pseudo worked well. Using the Ibuprofen alone nothing reduces the intensity short of 800 mg. However, at the time we gave those dosages we did not know if DD had PANS/PANDAS. We were desperately looking for a way to help manage the symptoms. We have kept in mind to always go low and slow with everything.

 

The new Dr seems to know what is going on, and has lots of experience with adjusting the supplements. Right now were are doing once a week adjustments taking baby steps.