Question...biomed | Autism PDD

Well, I would definitely let the ASRD folks take a look at him and listen to what they have to say.  ABA has lots of pretty good reputation as an effective way to teach language to kids who are struggling to communicate.  Sorry that they've had him jumping from placement to placement, but maybe there's a better place that will help him leran to communicate more effectively.  I wouldn't worry so much about losing academic forward progress.  Academics, at least at this age, seem to be the least of our worries.  I would put language/communication as the number one priority, and whatever techniques they believe would be useful for acheiving the goal of funcitonal communication, I would hear them out.  Good luck with everything - hang in there :)

fred39381.7507407407

To Colin's Mama.... I second what fred has brought up... Give it a shot...

A step backward... may lead to strides forward.... Hey, all. I wasn't sure which biomed board to put this on or even if it might be more of a general question.

Colin was loosely diagnosed PDD-NOS for two years. Yesterday we received the news that he has a new diagnosis: autism. So now he's firmly on the spectrum, no more waffling.

I was YouTube-ing about autism. I want to learn more now. Until now I've been thinking that maybe with his early intervention and early start programs and with our help at home, he would start speaking. He's four years old and has made strides in the past few weeks on talking but still has a working vocabulary of five or six words. He can say up to 15 words but not regularly. He's had the same five to six word vocabulary for more than two years now.

While You-Tube-ing of course I came across all the "miracle stories". I keep seeing the mercury toxicity tie-in. HOWEVER, I knew from birth that there was something different about Colin. (OTOH...this in itself wouldn't necessarily rule out environmental causes as he had his first vax at the age of 24 hours and after that, at least one a month; often, more than one). I never seemed to be getting "in there" and I felt like I was being invasive and intrusive when I talked to him too much. He would fall asleep out of self-defense. Don't laugh; I actually mean that literally. It took him until the age of almost 11 months to learn to reach his arms out to be picked up rather than just sitting there crying. It also took him about 11 months to look up when I entered the room to pick him up after work, or to respond to his name specifically...etc.

He is considered "mild" as he just barely makes it over the line (by several different criteria...diagnosed by a psych, pediatrician and SLP...well, official diagnosis was from the psych), but he does make it over that line so there we have it. We did go to a DAN doctor a long time ago...I'm ashamed to even say that now. His hair was tested and NO excess mercury (or other heavy metals) was/were found.

Even though some of his symptoms may mimic mercury toxicity, and even though he did in fact have 24 vaccines in his first 20 months (it's outrageous now that I think of it...and with the little one, we do vax but we're delay and selectively vaxing), and even though, yes, I have amalgam fillings, therefore highlighting the possibility of mercury poisoning...the fact remains that the DAN doctor's tests *didn't* show high mercury.

I'm just confused and don't know where to go from here. If it's not physical, then fine. We continue with the therapies (actually, he's currently in a communicatively handicapped class but may be moved to an ABA-model class...we're investigating it) and there you go. Colin is Colin just like I'm me. *But* if it *is* something physical and we do nothing to address that, and much later I learn we could have, I can't ever forgive myself.

So my question is...even though mercury toxicity and autism seem so similar, musn't they actually be different things, considering children like my son who were born with these symptoms and don't show mercury in their bodies? And my other question for the biomed parents is...what would you do? Would you trust that the mercury isn't there and forget about that aspect of things?

It sucks because actually, with the firmly autistic diagnosis I had a strange sort of weight taken off my shoulders and I was so happy to be able to just accept my son as he is but naturally, in researching autism (rather than PDD-NOS), the eighty bajillion stories about how everybody *else's* kid was "cured" by GF/CF, grapefruit seed extract, vitamin B or whatever (we tried all of those) kept cropping up. So too, obviously, did the whole mercury controversy. I really just wanted more information with my head out of the sand but of course, here's another can of worms.

Thanks for any help. I'm very confused. And yes, I'm pretty versed in the spectrum, anyway--I know there will be a faction that answers "He's still the same child he was before the diagnosis" (I know this) and a faction that says "Why try to change him?" (I addressed that above). Thanks, all.
MyDearColin39381.6458101852

ALL of us here, parents; fathers and mothers who have seen our child from birth would try to comprehend how our kid "became" autistic....

ALL of us went through different experiences... some painful and agonizing ones. And these then fashions our opinions and theories about the Etiology(Cause) of Autism.

I have learnt, through this Message Board, to accept the point of view of others, even though it goes against my own stand. And that is simply because I never went through it the way others had or are still going through it. WHO AM I to judge others! 

YET, it is good to remain open and to listen what others bring up... whether it's anything to do with mercury, vaccines, thimerosal, pesticide exposure in foods or even genetic, familial history or is it a combination of BOTH environment and genetic factors.

It's good to see the two sides of the coin (the head or the tail) or even consider the third possibility (when the coin is balanced on its thin side). 

So the DEBATE continues... amongst scientists, parents, care-givers, educators etc.... All this makes GOOD FOOD for thoughts and rumination even as we continue to help our child in any way possible, be it thorugh bio-med approach, dietary, behavioural etc.

I wish I could swear it was diet but cant...Our dd ate limited foods so doing the GFCF diet was a piece of cake for us once we found substitutes for her

..the ABA was extremely good for her getting language and motivating her to learn but cost a fortune.

If I had to do GFCF all over again I would~No regrets here:)

Thanks to both of you!

We tried GF/CF (no "accidents", 100% by the book) and saw no improvement at all and in fact, Colin regressed. He didn't regress for a day or a week or a month. He regressed for ten solid weeks and was only going farther downhill and after that we gave up. I have a pet theory that the carbs do in fact have a somewhat sedating effect on Colin, which might sound horrible, but how many people put their children on medications for hyperactivity and/or for aggressive behavior? I can't see that medicating with foods would be unacceptable while anti-hyperactivity drugs would be acceptable.

If he had only regressed for a few weeks, or even a month, or a month and a half, I could have stretched credulity to it still possibly being withdrawal, but two and a half months...

Now if he *hadn't* regressed but we hadn't seen improvements, I would have kept him on the diet. It certainly wouldn't have been hurting him in that case, and not seeing improvements in just a couple months would not have dissuaded me. It was the violence, complete loss of speech, total panic, night wakenings and all the other horrific stuff that *was* hurting him that I couldn't bear any longer. Again...it's pretty much impossible that it was still withdrawal after all that time, especially since, as I said, we didn't have any slip-ups, we didn't use any foods that could have been questionable in any way, we didn't have any "oh, just this once" times with food during that entire time.

I DO believe in GF/CF for many kids. I have heard wonderful stories about it. But in Colin's case it didn't help and was only hurting.

I was really referring more to the natural chelation methods you see talked about. But Colin's test was a hair sample and didn't show mercury. I guess I'm just confused by seeing all these "miracle" cures once again. I had abandoned them and was just very accepting for a very long time. It's only in re-researching...or, I should say, researching specifically about autism, rather than "he has PDD-NOS...maybe he isn't autistic at all," that brought all this out again.

It was very hard to hear the word autism yesterday. I've used it, loosely, and in fact joked about it; I used to call PDD-NOS "autism light". I saw that Colin had autistic-like traits but he wasn't solidly autistic, and every professional was still saying, "Colin is an enigma...if he is autistic, then he must be very high-functioning." That led me to believe that maybe everyone was wrong, Colin was just a little quirky and perhaps had an additional problem keeping him from being able to use language, such as apraxia of speech.

But it's for real now. I did sort of have a tiny nervous breakdown this week. It was a tough week. I'm currently having a breast cancer scare. My doctor was very reassuring but scheduled me for a mammogram. He was confident enough to schedule it for a month from now. My husband is freaking a little that I should go in right away but I have little choice in the matter unless I go to the emergency room to demand one...which seems...I don't know. So there was that. Then there was Colin's IEP where his Communicatively Handicapped teachers--who were the ones who insisted he move there *from* his SDC class in the first place!!--dropped a BOMBSHELL on me by announcing, "We can't fit Colin's needs." They went on to present even his strengths in the classroom as weaknesses. "He is well-behaved but that's because we believe he must be zoning out." (You can ALWAYS call Colin out of any reverie with a single word.) "Oh, he only knows his letters individually, his written first and last name and his numbers by counting or on sight because autistics obsess on letters and numbers." Ummmmmmmmm...so, between updating my will due to the breast cancer scare, arguing with the whole entire world on the phone--the Special Ed director, the regional center lawyer, the school district psych and another parent--and hearing "Your son is autistic," it wasn't a good week.

At the end of the autism announcement yesterday, the psych there asked me, "Is there anything else we can help you with?" I said, "Not unless you can tell me how I can give this news to my husband without making him cry." I failed. My husband cried anyway.

I'm sure there's a faction that thinks I'm an unaccepting horror. No, I did accept PDD-NOS...then had that changed on a dime, or that's how it seemed to me. (But I'm not arguing it...all things considered, I know deep down that it's correct.) I had accepted that Colin might speak more with signs than words. Then his CH class "fired" him, basically, and are currently trying to shuffle him off to another class. I accepted that I was dying of breast cancer, then discovered that it's probably not breast cancer, but then was told I can't *really* relax for another whole month.

My marriage is in shambles. I'm hugely fat as all I ever do is self-medicate with food in between a thousand therapies, classes (the little one is speech-delayed...doesn't show autistic traits yet...but I'll never trust that one again), phone calls, doctor's visits for my children. I'm just tired.

I'd really like to know we've done all we can do, that Colin is just Colin and that he's awesome (I love him so much), that I can eliminate the possible mercury tie-in from my brain and just go on from here. That's why I spilled my heart out today...I'm just wondering about others' input.

Thanks again to the two people who responded...it means so much...it's so good to talk.

Hi.  You sound like you're going through a hard time, and I'm sorry about that.  You don't come across as a horror at all, so don't worry that folks reading this are thinking that.

I would pursue the placement with the ABA.  Have they given you any indication about how much ABA he would receive?  If he only has a handful of words, at four, and that after two years of special education, I would say that it's definitely time to try a new placement.  Lots of people have had success with ABA, especially, it seems, the "Verbal Behavior" approach.

I would not look at their suggestion of reassigning him to a more intensive class as a negative.  I think that your best chance of having him achieve effective communication is with an intensive, 1:1 program.

What does this program look like?  Can you describe it - give some details?  What sort of therapy has he recieved so far to help him with his language?

Hi...thanks, ((fred)). Sorry to serial post, but I'm trying to get a bunch of posts in b/c I have a million more things to do before this night is over so my "me" time is about to end, LOL...I'm sure every parent here can relate to that.

Well, see, the CH class is a new placement itself. I didn't want to pull him out of SDC. Even though he didn't make verbal progress during that time, he made huge strides in other areas, like taking turns, sitting in Circle Time, clapping his hands to songs, and some hand signs.

But the district basically insisted that I try this CH class. I seriously had my doubts, even though the majority of the kids in there also have a diagnosis; two actually are diagnosed autistic. But they sounded very strict on the children following with a first verbal command, etc. and I didn't think Colin was capable of doing that. I was surprised--he got in. They seemed to have NO doubts. So I pulled him from SDC and cried because I loved them all over there so much and Colin adjusted to this new class, and adjusted to going on a bus (holy cow!), starting May of last year. He only went May-June there, then it was summer, then he had a summer school class in a different school, then he went back to this class and therefore has only been in the class technically for four months. Now they want to yank him out AGAIN into a totally other placement.

If the ABA model class is a better fit, then it is, and it's a good idea, but all this yanking and moving and everything just seems hard and I'm actually surprised that Colin keeps adjusting so well.

I don't know what this ABA class is like...well, I'm calling it the wrong thing; it's actually called an ASRD class (but is based on the ABA model). They're going to go to Colin's regular (well, is it regular? Does he HAVE a regular class? sigh) class and observe him; then they're going to assess him; then my husband and I have to observe the ASRD class. Then we have to accept it or else CH has to keep Colin. But I do know that if the ASRD class seems better, we'll go for it. It's just that it's been a whole bunch of shocks and it did indeed feel like a demotion.

Colin is really no problem for his teachers. He loves to put on his backpack and sit nicely on the bus in the morning. He gets to school, puts his backpack on the correct hanger, takes his name card out of his cubby and lines it up with his last name on the sticky board, sits in circle time and does all the right stuff. But what has really made me want to keep him in CH is his progress. In the other years he's been in EI, Colin made NO progress verbally. I mean none. Zippo. But in the past two to three weeks, suddenly, instead of having to pry his very-few words out of him, he is *spontaneously* using them. He also for the first time in his life used imaginary play!!!!!!!!!! I couldn't believe it. Additionally, between September and now, just two months, he has learned to write his first name unprompted, can identify his last name on sight, can count (but with a pretty severe speech impediment) to seven (and loosely to ten), and can point out and identify the correct numbers AND every letter of the alphabet. (ETA: as I said, he can say about 15 words, maybe a couple more; that includes saying his numbers. Regularly, though, he only says six or seven words.)

So it's the academics that I don't want to lose. They have told me that the ASRD will still focus on academics. I'll see what the class is like. Like everything else when you have a special-needs child, it will "take time" and Colin will not even be accepted in/eligible for this new placement for about two more months.

But I think that's part of what made what shouldn't be a shock, a shock. He had FINALLY made this progress from out of nowhere and all in the space of a week or two, and then IMMEDIATELY after that we were told 1. he shouldn't be in CH any more and 2. he's flat-out autistic, no more waffling.

Thanks so much.
MyDearColin39381.7430671296

((Colin's Mama))

A hug to keep you going...

I just wanted to give you a ((((Hug)))) too. You are going through so much and I know how hard it can be to have everything come at you at once. I sometimes feel like the world is crashing in on me and I just want to run away. It always passes soon enough for me and I hope it does for you as well.

As far as the mercury, if he was tested and didn't show high levels then I would just try hard to focus on the new placement that will give him ABA. I didn't see where you gave his age, I may have missed it, but please trust me that there is time enough for acedemics.

I don't think you sound like a horror for wanting to investigate every possible option to help your son. I'm sure the re-diagnosis is hard for you, but please know that there are many kids with an autism diagnosis (my son included) that never had biomed interventions and have made great strides. Don't loose hope if there is not a medical reason for his autism (heavy metal, diet, etc). Those of us that didn't use biomed interventions should all put videos on youtube so that other parents can see that there are kids that do progress without biomed. I feel badly for parents that think that if their child does not respond to biomed interventions that they won't be a miracle story.

You are in my thoughts as you journey through this difficult time. I know you'll get through it. Another (((HUG))) for you!

I just saw where you said he was 4. Sorry I missed that before. Thanks so much! It means a lot to me to hear this input.

Yep, he's four.

I think it's a great idea to post YouTubes or stories about children who have made big leaps without biomed! Not because I don't believe in biomed (I do believe that many children can benefit from a change in diet, etc.) but you hear about a parent who tried grapefruit seed extract or B-12 shots or turning around three times and howling at the moon and overnight, BAM, the child suddenly woke up one morning reciting the Magna Carta and arguing with you its merits v. deficits in context of its times or something.

I'd pretty much be satisfied with "want, Mama."

(Actually, I'm exaggerating. Even though he has very few words, Colin has lately been starting to put those together! Such as "I want" or "candy please" ("I" and "want" he says with words and signs; "candy" and "please" are just with signs.) But that's progress too...to put more than one word together.

I just love my little boy so much...

I am definitely going to give ASRD a chance. If it really is the better placement, then it is. That's really the whole point...what's going to be best for Colin. It's going to be sad to see him ripped from yet another set of friends. :( HOWEVER...I do notice he gives new people a shot; he never loses that optimism. Just today on the playground, he was making eye contact with and following around every other kid there, and having a great time. He never loses that faith in people. He sees every new person in his sphere as a potential friend. I think that's beautiful, and if that's a "part of autism" too, then, well...go autism. Because it's a pretty cool quality to have.

Hugs all around...you have no idea how much it helps to hear from other parents.
MyDearColin39382.5153587963

Okay, well.  First off, hair testing is not an accurate way to test for heavy metals.  If you've ever cut your childs hair then you have cut away evidence of past exposure.  The hair on your childs head can only tell you what heavy metals he has been exposed to recently.

Secondly, your son is the same person today as he was before you had this meeting....even though technically PDD-NOS is autism anyway.  Your sons teachers expressing THEIR opinion that he is classically autistic has not changed anything....not the level of his abilities or what he is capable of, or his dx....NOTHING.

Third, if I had someone offering ABA to me for free, I would jump on that ASAP!!!  ABA is very expensive and very difficult to come by, and if you have an essentially non verbal child, which is basically what you are describing (a four year old with 15 words- only 6 or 7 of them used regularly- is basically non verbal) then your main focus needs to be communication, not academics, at this point and a classroom that focuses on that is where you want to be.  Your child is not going to be learning much without strong language skills anyway.

Fourth, if you want to find out if Colin really has heavy metal toxicity, have his urinary porphyrins tested.  You can get that done at great plains laboratory with approval from any Dr.  A build up of heavy metals in the body will affect the level of porphyrins in the urine...no matter how long the heavy metals have been there.  So this test will show past and present exposures to heavy metals.

We just started my son (who is PDD-NOS and who I have considered to be autistic since before we even got a dx) on biomedical treatments in August and the improvements he has made are phenomenal.  And he was considered to be VERY high functioning before we even started so I am floored at the results we are seeing to say the very least.  He was verbal and putting up to eight and nine words together when we started, and we were getting beginning conversations and he had fantastic eye contact and was very social and interested in other kids.  Now, we are getting full appropriate sentences, questions and today after five full days on antifungals I got my first "Why" question ever!!!  After another nine days of antifungals we will start chelating and I can't wait to see what is going to happen after we start removing the lead and mercury from his body.  I'm so excited for him I can't stand it!

Anyway, I think we all certainly understand how you are feeling and what you are going through.  The self doubt we all feel when faced with these decisions is unbelievable, and the guilt when we feel we've made wrong ones is paralyzing.  If I could go back and make the ABA decision all over again (I decided against it for financial reasons) I would in a heartbeat, because as good as my little one is doing now, I wonder where he would be had we done it?  So, go for it!!  Good Luck to you and Colin and hugs to both of you!

 

Julie, so glad to hear your little man is doing those things! \o/

My girl only asks "where?" so far....

Just wanted to echo about the hair analysis not showing up mercury. My son's mercury was lowish in the hair but the urine shows it up more.

My son's autism was also present from birth but I have mercury amalgams so I am figuring that is the issue. Riley is also high in lead, aluminium, arsenic. The exposures can be via a lot of means but the issue is that they can't detoxify that well so any exposure gets trapped AND leaky gut makes the issue worse as the metals get into the system.

We have been gfcf for a year and supplementing and started chelating but about to chelate more 'aggressively'. We have also been doing aba for 18 months- 10 hours last year, 6 hours this year. We are lucky in NZ here- we are part of a charitable trust (as no government funding and no health insurance) so it is quite affordable for us.

Both have done wonders and I expect the chelation is just the icing on the cake as the gains made are great and because Riley is high functioning, we are just looking for improvements in receptive language and social skills now.

Because Rileys autism was always there, we were onto it by the time he was 2 and a 1/4 so he has had a lot of intervention and just turned 4.

Sugars can amplify a yeast issue and yeast can help keep leaky gut going as well so regression with gfcf may be due to higher sugars in the diet (due to cutting out other things???) and thus bigger yeast issue? don't know - just putting out feelers.

Things sound tough for you and I feel for you. We had a pretty hard road of it with my daughter having huge issues (not autism) but enough to stress us to the max. I hope things start looking up for you.

 

I wanted to chime in on the hair results.  Not only does it show past exposure, but it only shows the amount the child excreted.  So many of our kids, inlcuding mine, are unable to excrete the heavy metals and toxins from their body so the toxins and metals just build up in the tissues.  A lot of this info about heavy metals and the testing of it has made some sifnifican changes over the past few years because of the porphyrin test created by the lab in Paris France which measures the body burden of heavy metals and toxins (does not include the brain).  So you son may be toxic.Thanks so much for all this help. I hadn't realized all that. I am debating whether I should give my terrible DAN! doctor a call just to send for this one test. I didn't like the guy but I hate to start over with another one and another huge bill. That may sound petty, but...mine was not a good experience.

I appreciate the input. I am considering Zeolite or something-like.

[QUOTE=MyDearColin]Thanks so much for all this help. I hadn't realized all that. I am debating whether I should give my terrible DAN! doctor a call just to send for this one test. I didn't like the guy but I hate to start over with another one and another huge bill. That may sound petty, but...mine was not a good experience.

I appreciate the input. I am considering Zeolite or something-like.
[/QUOTE]

I would not return to the DAN if you did not like him.  Not all DAN docs are the same.  There are good ones and bad ones.  They all practice differently, even if they use some of the DAN methodology.  Go to www.generationrescue.org and click on "Find a Rescue Angel."  Find one or two in your state and ask who they see.  Many DANs will do telephone conferences for appts because they mostly rely on lab results and parent obeservations in doing the treatments.  Each state is different in whether they require the patient to have an in person appt w/ the doc.  YOu can also visit various yahoo groups, particularly chelatingkids2 and ask about a certain DAN doc.  You will find a ton of info there.

 

Good luck.

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