Should I be concerned -- autism spectrum

[Manonash]

My daughter is 2yrs 4m. She is very sensitive to sunlight. She gets really upset about bright, direct sunlight, not always, but a lot. She covers her face and starts fussing, and saying, "Sorry, sorry." (She says that when something hurts, because we've always said, "I'm sorry," whenever she would get hurt or something). Loud, mechanical noises scare her and she doesn't seem to get used to them - vacuums, appliances, trucks on the road. There are days when they don't bother her at all, but rarely. People yelling at t-ball games bother her too. I'm unsure if her language development is exactly where it should be. She does use two words together, but she rarely puts them together of her own choosing; they are just phrases that mean one thing to her.

She doesn't play with toys much, but when she does, she does do symbolic play, and knows how to use them for what they were meant to. She interacts well with us and others.

These things could just be normal, but since I'm afraid she's gotten a good dose of mercury, I'm concerned. I have a TON of fillings in my mouth and got a flu shot when I was pregnant:. She has been selectively vaxed, but none with even trace amounts of mercury. We have done a hair test on her a few months ago, and it came back with mercury not really low, and not really high, but if you follow Andy Cutler's counting rules, she met number 5. DH and I have been scared to chelate her, because, well, it just seems really scary. We said we'd watch her and retest later, and if she started showing autistic symptoms then we would revisit the chelation issue. He just thinks I'm being paranoid (I have OCD, so that isn't a far stretch.)

Thanks!
Shonda

[tanyalynn]

Can I PM you? We wrote a while back, and things are progressing well with my son, if you're interested in what we've done.

And this is hard.

[Manonash]

Please so PM me, I would love to hear how it's gone for you. I'm really nervous about all this. Part of me really thinks we need to chelate, but right now, my fear of doing it is overriding my concern, since for the most part she seems fine. DH has felt the same way.

She's also been toe walking some. Not a lot. A couple of times a day for a few seconds. At first it just seemed like she was playing with it, but now she'll be walking and go up on her toes, but it doesn't seem like she's doing it on purpose.

I looked up language development last night for 2yr olds. She doesn't use pronouns, I don't think. She seems to say, "I ____," but I'm not sure. She definitely doesn't have 150 words, and other people can't understand her all that well. Since I haven't spent much time around a "normal" 2yr old, I'm not sure if this is normal or not.

[tanyalynn]

Done. And I hope I'm not a thread killer for you!

[sbgrace]

Things you mention aren't autism signs. Please don't consider chelating your baby (something that can have negative effects) based on those issues. What you describe isn't autism and I do know autism as my son has autism. If you are concerned about her speech have early intervention evaluate her. My friends perfectly normal toddler wasn't combining at two. She was using gestures like pointing and waving--those are important in terms of autism. Neither of my kids (my very typical kid or my spectrum child) and many other kids I know don't have pronouns at two.

Many kids are unhappy with sun in their faces (both my boys do much better with hats) and only my typical kid has issues with noises. His autism spectrum twin loves loud noises! So if this one persists you may want to look into sensory integration things and maybe seek out an OT to work with her on tolerating noise. I plan to possibly do that for my son--but he is not on the spectrum.

Do you want more information about autism? There is a little test that can tell you whether to be concerned. http://www.childbrain.com/pddassess.html

If you find you are still concerned and given your OCD my suggestion is get on a list for an autism evaluation and learn to do floor time with her. Then if your fear is true you'll be helping her in a way that isn't going to possibly harm her if it isn't true. Pick things you would do without qualms with a typically developing child. And realize that with OCD you're likely always going to have some fear that something could possibly be wrong. But don't let it drive your behavior and decisions with her into areas that could be detrimental. It's hard to balance OCD and being a mommy...I know as I do it too.

[BookGoddess]

I have a child on the higher functioning end of the autism spectrum. Some of what you've described describes DD when she was that age. On the other hand, as sbgrace pointed out, there are many neurotypical kids who also have those quirks as well. If you'd like more info about DD, you can PM me.

I am a big supporter of doing biomed however I would NOT chelate a child without extensive testing first. You want to make sure her gut is in good shape. You want to make sure she's very healthy. You don't want to move toxic metals around without having adequate mineral supports in place. You want to make sure her amino acids, vitamin levels, minerals are all where they should be. Chelating should never be the first step and if you do it eventually please do it with a medical professional who knows a lot about it. Here's a good Yahoo group. http://health.groups.yahoo.com/group/chelatingkids2/ I also like Andy Cutler's low and slow approach group as well.

We've also done a hair test and what's not so great about a hair test is it only shows what the child is excreting. Kids who can't excrete the mercury won't have mercury showing up on their hair tests. The mercury is stored in their body instead.

[Mallori]

Have you had her eyes checked? My friend has two sons with something called Ocular Albinism and they are very sensitive to sunlight. They both wear transition lenses in their glasses.

[lindberg99]

My 4 yo is really sensitive to sunlight. I asked the optometrist about it last time we were there and he said it probably just means that DS will be good about wearing a hat and sunglasses. I know another little boy who is 5 who is the same way.

I think the sensitivity to noises is really common. My 10 yo will still put her hands over her ears at certain loud noises like the vacuum.

If you are concerned about her language development, you can always get her screened for free by your state's early intervention program. I found a general info page for Texas http://www.dars.state.tx.us/ecis/index.shtml

[Manonash]

Thank you all so much for your support and help. And, hugs to all of you with a child on the spectrum. Don't worry, I don't plan to go out and start chelating her right now, and if I ever do chelate her, I will definitely seek out professional help and use Cutler's method. I wouldn't dream of doing it without extensive testing first, and monitoring during if it was needed.

My concern is the same as some of you mentioned, that many neurotypical kids have the same quirks.

sbgrace: thanks for the link. I'll definitely check that out.

BookGoddess: I've been to that yahoo group while I was looking for information on amalgam poisoning. I would love to hear more about your DD, please PM me when you get a chance.

[JaneS]

Any yeast or digestive issues? Antibiotics ever in her life?

My son had a lot of "autism like" behaviors which were directly related to his digestion, intestinal flora imbalance and food allergies.

Before I chelated I would consider these issues and also learn about intensive nutrition to support natural detox of the body. Such as high vitamin cod liver oil especially for brain development and language. Dr. Mary Megson has done significant work on vitamin A and language and ASD. Minerals and vitamin C are extremely important as well. I learned a lot from the ASD community regarding biomedical basis of behavior and nutrition even though DS is not on the spectrum.

I've read several times about yeast and sound issues.

[tanyalynn]

Jane, from some of the research it seemed like you were doing, I thought you were concerned about your fillings for your health and your son. Did I misinterpret?

ETA: that was just a question that popped into my mind, not to discount everything you wrote above--you're WAY more knowledgeable on all the topics you mentioned than I, I just remember reading fascinating old posts on dental stuff.

[JaneS]

Yes, I had mine out and I weaned him at 26 months b/c of that. My hair test passed counting rules, but then learned it is useless to take while bf'ing b/c your minerals are skewed then. Planned to ttc after that but it was not to be.

We have not done chelation beyond "super nutrition" and enzymes.... my post above was definately NOT to say that one of his causes isn't metals! (And lack of proper nutrition that supported detox.) I actually had a root canal tooth out at end of my 1st trimester that likely contained Hg, it wasn't just my fillings that I think contributed.

Of course the massive antibx modern medicine conned me into taking to was a big part I'm sure.

I feel very lucky despite all the difficulties we had. And still have. But no, not able to chelate at this time.

[JaneS]

Let me say this, if I had a child on the spectrum the issue of chelation might be different. Unfortunately I'm not the only decision maker ... so having a neurotypical child, albeit one with life threatening allergies, makes it harder to "justify" it.

I just wanted to offer our perspective considering that chelation might not be a route taken and if the child is not on the spectrum... I have seen many kids with clear signs of nutrient deficiencies (narrow palate, crowded teeth) and also speech issues, but no autism. I think first in term of super nutrition and then chelation ykwim?

[tanyalynn]

I just wanted to offer our perspective considering that chelation might not be a route taken and if the child is not on the spectrum... I have seen many kids with clear signs of nutrient deficiencies (narrow palate, crowded teeth) and also speech issues, but no autism. I think first in term of super nutrition and then chelation ykwim?

This goes to the heart of some of my toughest struggles for the past year. Seriously. What I wouldn't have done to find a few real people to talk with. Once I'd made the leap to believe that my HCP provider was right and my health problems were related to my fillings (not ignoring the many poor choices I've made all my life, nutrition and taking some care with environmental chemicals being two biggies), it wasn't hard to decide to chelate myself. But making the decision for the kids was _much_ harder. I really struggled. They aren't massively unhealthy--the signs of problems are really subtle, especially for my daughter, who possibly has more toxins--being first-born and almost completely vaccinated (have I mentioned I'm damn grateful for my husband's genes? we dodged a bullet there). Anyway, I decided to chelate them both. We're early on, just a few rounds in, an it'll likely be about a year to be done (especially given how slowly I accomplish things!). But finding people who have _any_ familiarity with the topic, well, that would've been so nice when I wasn't sure what I wanted to do.

Jane, you know your situation best, of course. But do you think the allergies are mostly (all?) unrelated to the metals? Kenneth Bock's new book argues that allergies, asthma, adhd and autism are all detoxification and immune system problems with overlapping causes, depending on the individual. While his approach is more medical than the way I'm going, his overall viewpoint really resonates with me. Which I guess is why I'm making the choices I am.

[AfricanQueen99]

The light and sound issues were/are me to a T now and as a child. I'm classic Highly Sensitive Person. Have you read the Highly Sensitive Child to see if she fits into any of their checklist items?

[JaneS]

Originally Posted by TanyaLopez

Jane, you know your situation best, of course. But do you think the allergies are mostly (all?) unrelated to the metals? Kenneth Bock's new book argues that allergies, asthma, adhd and autism are all detoxification and immune system problems with overlapping causes, depending on the individual. While his approach is more medical than the way I'm going, his overall viewpoint really resonates with me. Which I guess is why I'm making the choices I am.

I think DS's allergies are related to all of these causes interacting with one another: metals, getting formula and antibiotics at birth, my nutrition and poor digestion/gut flora imbalance and genes activated by the above.

I have Bock's book! I think he has excellent points from what I've read so far but of course I'm a little less in the medical camp and more in the super nutrition camp than he is. I would chelate if I could!

[Manonash]

African Queen: I'll definitely check out that book. She's been highly sensitive since she was born really. Super alert right from the start.

Oh, wow, Jane that sounds like us! DD got ABX at birth due to not knowing when my water broke. Since then, she has only had one round of keflex for a persistant bladder infection, and she was in pain. Her gut seems pretty good most of the time. Well digested, and formed stools, very little odor.

I'm considering weaning for the same reason. I really need to get this health stuff for myself underway, and I can't until she's stopped nursing. My big issue is that I can't go at it whole heartedly until she stops nursing, because anything I do to get my liver clearing out stuff will put more metals in my BM. I don't want to wean her . Chances are, she'll be my only child (unless we decide to adopt) because by the time I get my health issues remedied, I'll be getting a little too old probably. I'd rather her just decide. I want her to remember nursing too. But, I may have to wean anyway. Haven't really decided what to do yet. Oh, I hate this!

Thanks for all your responses and discussion! I really appreciate it!

Shonda

[BookGoddess]

Tanya - If you don't mind me asking what are you chelating your children with? Are you following the Cutler protocol?

[tanyalynn]

I almost missed this thread--we just moved. Yes, pretty much the Cutler protocol. I've got a healthcare provider who's guiding us, so I didn't have to come up with the vitamins/minerals on my own (thank goodness!!), and she's helped fine-tune dosages and such for the kids. But yeah, the every 3hrs round the clock thing for the kids (with a long break at the moment--just moved, need to settle in, like that). So far, only ALA for the kids. Their only exposure was me, and since they're 2yo and 4yo, it was long enough ago that I decided not (for now) to do any DMSA. I just got a hair test for lead (because DMSA is appropriate there and ALA not) and no lead.

And BookGoddess--I don't mind you asking at all. Like I said above, making this decision was really hard and I felt very alone, and sharing how I weighed things for my situation makes me feel like it may be easier for someone else to figure out what's right in their situation.