Re: Help with my son

[Guest guest]

Hi ,

I'm sorry to hear you son is struggling with this now. I'm new here

so don't know the background to the situation, but I will just throw

out a few ideas that may or may not apply.

I have ADD myself, and only discovered it at age 50. But it caused

huge difficulties for me all my life. It's great that you are being

so diligent in figuring out how to help your son.

I suspect that I've had Lyme disease most or all of my life. I

joined the LymeStrategies group almost a year ago, where

several list members are parents of children with autism. They say

that ADD and autism are on the same spectrum, so what works for their

children may help ADD also. One list member is president of an

organization on Lyme and autism and is very informative.

Some of the formerly autistic children have improved dramatically,

and a few have advanced to mild ADD, which is still improving. Most

of these children are on the salt/vitamin C protocol for Lyme which

is discussed on that list, but also receiving many other modalities

to heal them.

My guess about my case is that Lyme, vaccinations containing mercury

and other toxins and contaminants, and possibly other environmental

factors caused my ADD. As far as I can tell, mold was not a factor

but it's impossible to know that from this distance. Intestinal

candida may have been involved.

Just mentioning all these in case you have not looked at

vaccinations, Lyme and other tick-borne diseases, etc. The " brain

fog " I experience now from toxic dieoff of the Lyme feels just like

ADD always did, except more intense. It is nothing new. So I

believe most of my ADD was caused by Lyme neurotoxins. It can

certainly have profound and varied effects on the central nervous

system.

If any of this sounds worth pursuing, you could join LymeStrategies

and write to Tami Duncan, the president of that Lyme/autism

organization. She posts very often.

I don't know enough about delayed reaction to mold exposure to

address that, but I'm very curious as I may be suffering from the

same thing.

I realize you may have already looked at these factors, but just in

case . . . .

Judith

>

> Hi All,

> We are being faced w/another problem and wondered if any of you

have heard of this. Not just read about it, but know of people who

have had this happen.

> My son (8 yrs) has been struggling the past 2 years w/school. It

really never came into such a bright light until this year. He has

always been smart, kind, shy, helpful, attentive to every detail.

Basically he was a perfect child. Everyone loves him.

> However this year we are faced w/having him tested for ADD/ADHD.

Upon my request along w/his teachers concerns. He is constantly

needing to move, fidget, can't concentrate, doesn't understand

directions, zones out while being spoken to, zones out for no reason,

constantly distracted, nervous if there is to much noise, loss of

appetite, can't wake him up in the morning, stomach aches,

frustration, sadness, blurred vision, headaches after reading, words

look like little bugs plus a few others.

> His classroom and the entire school is mold free. We checked his

room for MCS triggers. So, that seems to be good, atleast where we

have control over it, filters are MERV 11 and changed monthly in his

room. We got him glasses, which he didn't really need but the Dr.

said it might help his vision. The lowest prescription possible.

> Here is my thought. He didn't ever have any of these things. Or

atleast they were not obvious. But, the past 2 years they are

getting VERY obvious. This would be 4 years after exposure. Has

anyone encountered this happening that long after exposure? Or is it

just be getting worse from his exposure do you think? Or this is

just him? If any of you know of anyone who has experienced these

problems this long after exposure I'd like to hear it. You are

welcome to e-mail me privately or share w/the group.

> Have been reading up on it and will be making some changes around

here to try to help him on this end. The school is also trying to

help. They want to try and fix it in house as much as they can, so

he doesn't need the meds if he is diagnosed. For this I am lucky.

> I am exhausted from my daughters situation, it is really hard

having to conquer another one. But, I have to. My little man is

really suffering from whatever is going on.

> Remember my home is a safe zone because of my daughter.

> Thank you in advance,

>

>

>

[Guest guest]

, did you once say that you live in Michigan? I am asking because

I live in northern Indiana and may have some doctor suggestions for

you. If this might help, please feel free to email me privately.

-

>

> Hi All,

> We are being faced w/another problem and wondered if any of you have

heard of this. Not just read about it, but know of people who have had

this happen.

[Guest guest]

Hi ,

Both my sons had a similar experience to your son. They were both

exposed from birth (and I actually believe were born with the toxins

due to my mold exposure). They lived 11 and 14 years, respectively,

in our house that I only discovered last year is a sick house (due a

ruff leak that was in the house from day 1 and that was improperly

repaired about 5 years ago). My younger son had many ADD/ADHD

symptoms and I was at the point of getting him evaluated (he was 8 at

the time also) when I started putting together the pieces to my own

health issues. I also realized when I was reading all the books on

how they do these evaluations, etc. and what qualifies as a true

issue versus what they call " shadow " syndromes that I had whatever he

had. My journey started with Lyme (almost 4 years ago), but I now

know that Lyme was just the straw that broke the camel's back and

that either mold and/or celiac disease are the root issues.

My kids were actually doing quite well in school, but I think they

were doing what I had done much of my life and compensated. This is

one of the problems with kids that are on the higher end of the IQ

spectrum. If I had not gotten so sick myself with the Lyme, I

honestly would still be compensating and my poor kids would still be

suffering and likely still making decent grades in school. They're

now both performing at the top of their classes and in the 99% for

many of the standardized tests, whereas in the past (prior to the

GF/CF diet and CSM protocol) they were in the 70-90% ranges. That

all said, my younger son still has a tremendous amount of energy

(really surprising given his low MSH, high C4A, etc.), so some of it

is just plain personality

I absolutely believe the symptoms can be delayed symptoms. Also, it

seems possible that something has made your son's bucket that

tolerates the toxins overflow. Is there any possibility he was

exposed to toxins as a result of your daughter's recent incident

(i.e., riding home from school in the car sitting beside her, etc.)?

I also believe that given our toxic world (air, water supply, food

supply, etc.) that for some of us the battle to remove the toxins is

continuous (especially for the dreaded genotype). Do you know your

son's genotype?

You mention that you've controlled alot of it with diet, so I'm

assuming you've done the gluten free and casein free diets. Those

helped my kids (and myself) tremendously before we even knew about

the toxin issue.

One thing to consider would be basic nutrient deficiencies like B

vitamins, Magnesium etc. From birth, you have alot of those stored,

but around age 7, they've become depleted. So, when you have the

leaky gut, issues etc, they're not likely being replenished. I give

my kids lots of B vitamins (B6 is good for focus). There's a

nationally known doctor that treats ADD/ADHD with nutrition. Here's

here website that has lots of good info:

www.blockcenter.com , with this part specifically discussing the

nutrients:

http://www.blockcenter.com/ADD_ADHD/Nutrition.html

And, has your son gone through the CSM protocol and have you had him

do the VCS test to validate that it is the toxins?

I wish you well - I know what you're dealing with, but he's so lucky

to have you as a mother.

B.

[Guest guest]

Many people on the Lyme forum are dealing with Candida or mold also,

along with various coinfections, toxic metals, etc., and my

impression of the parents with autistic or ADD kids is that they have

put a lot of effort into learning about and treating the conditions,

and most of them seem to be making good progress. They seem to

follow pretty comprehensive protocols.

It's an active group and you should get responses pretty fast.

The Lyme/Autism organization seems very active; they are organizing a

conference in June with some top doctors and researchers. They might

be a good source of info for you.

I have to say that since I started treating the Lyme, I've had a few

good days and hours, where my brain worked better than I can ever

remember. So for me, Lyme is a major factor in the ADD. But it

might not be for many others.

Sorry to hear that you daughter is so sick and I hope she improves

soon.

Judith

>

> Thank you Judith for taking time give me other things to look

into. Believe me I will investigate all of them. However, I do

believe it is caused from our past mold exposure. My daughter is

VERY sick also, but in other ways. But, it doesn't hurt to check out

other things. The vaccine though isn't a concern of mine, as I chose

not vaccinate my children. But, everything is worth you mentioning

since this a totally new area for me.

> Thank you,

> -Moderator

>

>

>

[Guest guest]

I debated on going forward with the testing for my son for the 504,

particularly from the perspective that I know that gives them more

time on standardized tests such as the SAT. And, at that point in

time, that was the biggest problem my oldest son had - he was so, so

slow with his work, but that's because he had to focus so hard to do

it properly. But, we ended up getting alot of resolution with the

diet. Of course, that was before I knew about the mold.

What brand of vitamin are you using for your kids? It is a constant

battle for me to get the vitamins in them and I find that by

switching brands, I tend to have better luck with them taking them

regularly.

On the gluten issue, I have found that the blood tests for the

antibodies are not nearly as accurate as the stool test through

Enterolab. We had my younger son's blood drawn in June by Dr. S and

it showed no antibodies. But, he had a seizure on New Year's Eve, so

I re-ran the enterolab test and his antibodies are now 3 times what

they were before he started the GF diet. So, we know he's getting

gluten somehow. He is extremely good about sticking to the diet, so I

don't think he's cheating. Our household is 100% GF, so it's not

coming from the house, but he does eat out with his dad once or twice

a week and I'm now surmising that's where it's coming from. We also

do have the possibility that he's taking hits at school, as they did

find mold in the music room at the beginning of the year - they

remediated, but I still worry about leftover toxins, which is

aggravating his immune system, causing these reactions to the

minutest amount of gluten. Also, my son is double-gened for celiac

(DQ2 and DQ8), which likely makes him super-sensitive. So, in short,

depending upon your son's genotype, even the minutest amounts of

gluten could be aggravating him and cause some of these symptoms.

On the lyme, I would recommend working through all the other things

before even going there. Lyme testing is highly inaccurate and it's

my personal opinion that Lyme is one of the opportunistic things we

collect because our immune systems are imbalanced (per that thread on

the reflux/low MSH/GI issues). Unless, of course, you have knowledge

that your son was exposed to ticks, etc. But, I would imagine Dr. S

screened for that already, unless you think it's recent, in which

case the sooner you get the abx the better. I ended up having both

my sons tested for Lyme through the neurologist I was seeing (over 3

years ago), because he suggested that all my health issues were due

to Lyme. Neither of my son's tests were positive (even on the Igenex

test), but this doctor still thought they had Lyme and wanted to give

them antibiotics. By that point, I had started piecing together my

own issues with gluten and based on the genetic correlation had both

my sons tested and as I said before the GF/CF diet seemed to resolve

many of their lyme-like symptoms. I took those tests to Dr. S, who

also ran the lyme tests on my boys and he said they don't have Lyme.

For me, what I had thought were " lyme " symptoms ended up being

symptoms of the toxins from both Lyme and mold. My personal opinion

(and that of many of the top Lyme doctors) is that you can't ever

really get rid of lyme as it hides in areas (like cartiledge) that

abx can't reach. So, you really just have to keep your immune system

strong, so it can be kept in check.

I do know based on experience that you can't determine what issue is

really causing what symptoms as the symptoms for lyme, mold, candida,

celiac, mercury, and even food allergies etc. all overlap more than

90%. And, due to the genotypes, many of the disease conditions can

co-exist (e.g., the celiac DQ2 gene always means you have a

predisposition for mold illness). This is why I think the genotypes

are so useful in figuring out what your highest priority issue might

be.

Be well,

B.

>

> thank you for your suggestions.

> We have done most of the things you have mentioned. We have used

the gluten free, along w/elimination of dairy, egg, nuts, wheat,

sugar, went all organic. We were able to add back some of the items

but others we didn't. Our home is chemically safe, mold free. But,

I'll admit we slacked alot. So, I started it again today. My kids

are both very sensitive to meds/vitamins. But, we started a liquid

today which is a great vitamin has tons of stuff in it. (to much to

list) So far no reaction.

>

> The school is testing him. They will be testing him for what you

spoke about w/your kids. If he is just bored because he is needing

harder work, his work is to easy.(not sure what it is actually

called) They have a ton of stuff they check for before we actually go

to the doctors. The tests and stuff are fun to him. (my daughter

did it all 3 yrs ago) Really they are hoping to get a medical

condition so we can develop a 504 for him. This will allow them to

get help for him, but also add the indoor environmental in it, like

they did my daughter.

> Yes, he has seen Dr. S and been on CSM. I have not had him tested

for lymes. Don't recall his geno type.

> I guess there is a slim chance he could have been exposed by my

daughter. But, I had her change before he got home because I knew 2

weeks before the school did that there was a problem. My daughter is

like a walking IAQ test.

> I will check out the Lymes because someone else mentioned that

today too. Another thing I am unfamiliar with.

> Also, thank you for the link. I would love to look at it and see

what else I can do. I believe (although some don't) that diet plays

the largest role in our health and healing.

> Thank you very much for your help. I am very happy you and your

kids were able to get a handle on their problem, and they can thrive

at school. I know for you it is a huge relief.

>

[Guest guest]

>>He has been walking on his toes,

This can be a sign of constipation, and yeast can be constipating.

> The only new thing we have been doing is a 30 day course of Sporonox

> for possible yeast.

The Sporonox may not have been effective against the specific yeast

strain he has. Or he may not have tolerated it.

>>maybe he had some type of weird

> reaction to the Sporonox?

Very possible.

> Also, I still haven't added in ALA and really want to but DAN thinks

> we need to make sure yeast is gone before we do it. Has this been

> everyone's experience? Does it cause more yeast?

Chelation tended to cause yeast for my son until about round 50. I

used GSE, Candidase, and biotin to keep the yeast under control.

Dana