Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 I went through something similar-My son was diagnosed with PDD and then I read everything, including " The Out-Of-Sinc Child " . He has some of the issues and I so hoped that was all it was. Most of the sensory issues have disappeared and more of the autism issues have surfaced. Although this comes and goes (Sorry-I hope I am not scaring you but this is our story) Good Luck and definately keep reading. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 I went through something similar-My son was diagnosed with PDD and then I read everything, including " The Out-Of-Sinc Child " . He has some of the issues and I so hoped that was all it was. Most of the sensory issues have disappeared and more of the autism issues have surfaced. Although this comes and goes (Sorry-I hope I am not scaring you but this is our story) Good Luck and definately keep reading. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Kirsten, I can sympathize completely with the 'final diagnosis' thing. I'm becoming convinced that 'they' will never know why my daughter is globally delayed and has seizures. HOWEVER,what I DO know is that changing her diet has helped tremendously. She is extremely social, so I doubt she'll be diagnosed as PDD, but she does have some sensory issues, so I suspect SID, as well. Meanwhile, I took her off all gluten, casein, soy, corn, dairy, aritificial anythings and other foods that seem to give her diaper rashes or make her irritable and/or aggressive. We now have a little sweetie on our hands. Most days, she is a joy. She's still delayed, of course, but is slowly making gains. I would recommend trying the diet, especially if your child shows any signs of food allergies/sensitivities at all. Good luck, Deborah __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Kirsten, I can sympathize completely with the 'final diagnosis' thing. I'm becoming convinced that 'they' will never know why my daughter is globally delayed and has seizures. HOWEVER,what I DO know is that changing her diet has helped tremendously. She is extremely social, so I doubt she'll be diagnosed as PDD, but she does have some sensory issues, so I suspect SID, as well. Meanwhile, I took her off all gluten, casein, soy, corn, dairy, aritificial anythings and other foods that seem to give her diaper rashes or make her irritable and/or aggressive. We now have a little sweetie on our hands. Most days, she is a joy. She's still delayed, of course, but is slowly making gains. I would recommend trying the diet, especially if your child shows any signs of food allergies/sensitivities at all. Good luck, Deborah __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Thanks Deborah, > I would recommend trying the diet, especially if your > child shows any signs of food allergies/sensitivities > at all. That's the kicker - he doesn't. <sigh> I've been thinking about getting him tested somehow (we are about to switch insurances so it will have to wait a couple weeks ;-) ) to at least point me in SOME sort of direction, rather than this nubious " he's allergic to SOMETHING...... " But it helps to know that even for kids with " just " SID issues, the diet can be beneficial. I have a friend who has a son with only SID, and she has been asking me. (I've been clueless LOL) Love, Kirstin <>< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Thanks Deborah, > I would recommend trying the diet, especially if your > child shows any signs of food allergies/sensitivities > at all. That's the kicker - he doesn't. <sigh> I've been thinking about getting him tested somehow (we are about to switch insurances so it will have to wait a couple weeks ;-) ) to at least point me in SOME sort of direction, rather than this nubious " he's allergic to SOMETHING...... " But it helps to know that even for kids with " just " SID issues, the diet can be beneficial. I have a friend who has a son with only SID, and she has been asking me. (I've been clueless LOL) Love, Kirstin <>< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 -...... " But it helps to know that even for kids with " just " > SID issues, the diet can be beneficial. I have a friend who has a > son with only SID, and she has been asking me. (I've been clueless > LOL) > > Love, > Kirstin <>< Kirstin, Did you know there is a protocol for a sensory diet? I haven't looked into it to see how it relates to gfcf, but our sensory therapist recommends it. Also,( I was in the SID group for awhile) I think it is a matter of opinion, too. A medical dr.- in my experience- is less likely to dx SID than PDDNOS. The therapists will say SID before PDDNOS. I finally told our therapist not to tell me my dd didn't have PDDNOS. I know she has issues outside of SID. Anyway, the SID group is a good resource. It actually helped me accept that yes, my child has PDD as do many of the kids in the group-just not dx. There were mentions of children toe walking and the parents related it to a sensory issue. Our therapist explains toe walking in sensory lang. too. She says she can tell me why my child does any of the " autistic behaviours " in sensory speak. It's how you look at it a lot, I think. There is a waiting list to get on the SID group. I left the group bc I became frustrated. I felt there were many children who were on the spectrum, being labeled by their parents as having SID. I just thought, with the ASD dx, they could be doing the diet, etc.,.. And the kids they described sounded exactly like the kids we have in this group, only most of them were SID, according to their parents. I think SI therapy is very, very important, but don't hold back on treating your child as if they were on the spectrum. Start the gfcf and see what happens. We saw a change in a few days. maybe someday my dd will have a new dx of SID, but I know the diet has benefited her and she is also recieving SI therapy. I say try it and see what happens. Hope I didn't offend anyone. Most of you know the battle i have had going through almost the exact same thing....I guess I have some opinionated feelings about the whole thing. Janelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 -...... " But it helps to know that even for kids with " just " > SID issues, the diet can be beneficial. I have a friend who has a > son with only SID, and she has been asking me. (I've been clueless > LOL) > > Love, > Kirstin <>< Kirstin, Did you know there is a protocol for a sensory diet? I haven't looked into it to see how it relates to gfcf, but our sensory therapist recommends it. Also,( I was in the SID group for awhile) I think it is a matter of opinion, too. A medical dr.- in my experience- is less likely to dx SID than PDDNOS. The therapists will say SID before PDDNOS. I finally told our therapist not to tell me my dd didn't have PDDNOS. I know she has issues outside of SID. Anyway, the SID group is a good resource. It actually helped me accept that yes, my child has PDD as do many of the kids in the group-just not dx. There were mentions of children toe walking and the parents related it to a sensory issue. Our therapist explains toe walking in sensory lang. too. She says she can tell me why my child does any of the " autistic behaviours " in sensory speak. It's how you look at it a lot, I think. There is a waiting list to get on the SID group. I left the group bc I became frustrated. I felt there were many children who were on the spectrum, being labeled by their parents as having SID. I just thought, with the ASD dx, they could be doing the diet, etc.,.. And the kids they described sounded exactly like the kids we have in this group, only most of them were SID, according to their parents. I think SI therapy is very, very important, but don't hold back on treating your child as if they were on the spectrum. Start the gfcf and see what happens. We saw a change in a few days. maybe someday my dd will have a new dx of SID, but I know the diet has benefited her and she is also recieving SI therapy. I say try it and see what happens. Hope I didn't offend anyone. Most of you know the battle i have had going through almost the exact same thing....I guess I have some opinionated feelings about the whole thing. Janelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Thanks Janelle, I can see why you are frustrated! I think it all depends on the " expert " you are seeing as to what diagnosis you actually receive. Annoying. What is the SID board? Love, Kirstin <>< Wife to Bobby (7 years) Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due 4/26/02) I sell books kids love!!! I'm an Usborne Books at Home Independent Consultant! http://usbornekirstin.tripod.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 > Most of the sensory issues have > disappeared and more of the autism issues have surfaced. This is what confuses me - which is which? Which issues would be considered " only " autistic and not SID? Thanks! (No your story didn't scare me at all. :-) ) Love, Kirstin <>< Wife to Bobby (7 years) Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due 4/26/02) I sell books kids love!!! I'm an Usborne Books at Home Independent Consultant! http://usbornekirstin.tripod.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 None of these diagnosis are black and white. I don't think anyone can ever be certain a diagnosis is an exact fit. There are a few things I would like to say. First, if your child gets a diagnosis of autism, you will get more funding for therapy. Even if you child is typical, therapy can help anyone and to get it for free is wonderful. When my son was diagnosed PDD and he was to be evaluated by the Regional Center, I wrote down every bad thing I could think that he does so he would get the autism diagnosis. As a result, he gets 15 hours a week group therapy (Sensory Integration - all therapists trained by the Ayers clinic which happens to be a couple blocks away) and 10 hours a week one-on-one Floortime and is only 2 years old - all paid for by the state. Who cares if the label is PDD, SID or AS - he is getting help so in the future he may have none of those labels. I have read much skepticism regarding the label SID. There are many that believe there is no such thing. I have read some of The Out of Sync Child and it does a wonderful job of helping us understand our kids, but they are still autistic. As for the PDD vs. AS, many as well as myself, believe the term PDD is used by doctor's that are afraid to tell the truth. It doesn't sound as bad as autism. I recently read an article I believe by Bernard Rimland that explains it well. I will forward the web addy when I find it. As for diet, I have read heard many children benefit from the diet that are SID, ADD or even NT. It cannot hurt to try it. > We are still awaiting a " final diagnosis " (notice the quotes ha ha) for my 3yo son Caleb. It will be a few months though. In the meantime I'm reading as much as I can and learning as much as I can. He seems to fall on the PDD spectrum, near the high end, but in reading " The Out-of-Sync Child " I'm wondering if Caleb's problems are ONLY SID, not PDD as well (although I know it's possible to have both, and if he DOES have PDD then he'll have SID). Can the diet/enzymes do something with SID ONLY or would he have to have true PDD in order for them to help? Or is only therapy his best bet? > > It's so frustrating not even knowing if I can rely on what the doctors tell me if/when we finally get to see someone. > > Thanks. > > Love, > Kirstin <>< > > Wife to Bobby (7 years) > Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due 4/26/02) > > I sell books kids love!!! > I'm an Usborne Books at Home Independent Consultant! > http://usbornekirstin.tripod.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 > We are still awaiting a " final diagnosis " (notice the quotes ha ha) for my 3yo son Caleb. It will be a few months though. In the meantime I'm reading as much as I can and learning as much as I can. He seems to fall on the PDD spectrum, near the high end, but in reading " The Out-of-Sync Child " I'm wondering if Caleb's problems are ONLY SID, not PDD as well (although I know it's possible to have both, and if he DOES have PDD then he'll have SID). Can the diet/enzymes do something with SID ONLY or would he have to have true PDD in order for them to help? Or is only therapy his best bet? > > It's so frustrating not even knowing if I can rely on what the doctors tell me if/when we finally get to see someone. > > Thanks. > > Love, > Kirstin <>< > > Wife to Bobby (7 years) > Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due 4/26/02) > > I sell books kids love!!! > I'm an Usborne Books at Home Independent Consultant! > http://usbornekirstin.tripod.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 > We are still awaiting a " final diagnosis " (notice the quotes ha ha) for my 3yo son Caleb. It will be a few months though. In the meantime I'm reading as much as I can and learning as much as I can. He seems to fall on the PDD spectrum, near the high end, but in reading " The Out-of-Sync Child " I'm wondering if Caleb's problems are ONLY SID, not PDD as well (although I know it's possible to have both, and if he DOES have PDD then he'll have SID). Can the diet/enzymes do something with SID ONLY or would he have to have true PDD in order for them to help? Or is only therapy his best bet? > > It's so frustrating not even knowing if I can rely on what the doctors tell me if/when we finally get to see someone. > > Thanks. > > Love, > Kirstin <>< > > Wife to Bobby (7 years) > Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due 4/26/02) > > I sell books kids love!!! > I'm an Usborne Books at Home Independent Consultant! > http://usbornekirstin.tripod.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Here is the article by Dr. Rimland regarding the PDD diagnosis: http://www.autism.com/ari/editorials/pdd.html > We are still awaiting a " final diagnosis " (notice the quotes ha ha) for my 3yo son Caleb. It will be a few months though. In the meantime I'm reading as much as I can and learning as much as I can. He seems to fall on the PDD spectrum, near the high end, but in reading " The Out-of-Sync Child " I'm wondering if Caleb's problems are ONLY SID, not PDD as well (although I know it's possible to have both, and if he DOES have PDD then he'll have SID). Can the diet/enzymes do something with SID ONLY or would he have to have true PDD in order for them to help? Or is only therapy his best bet? > > It's so frustrating not even knowing if I can rely on what the doctors tell me if/when we finally get to see someone. > > Thanks. > > Love, > Kirstin <>< > > Wife to Bobby (7 years) > Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due 4/26/02) > > I sell books kids love!!! > I'm an Usborne Books at Home Independent Consultant! > http://usbornekirstin.tripod.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 Here is the article by Dr. Rimland regarding the PDD diagnosis: http://www.autism.com/ari/editorials/pdd.html > We are still awaiting a " final diagnosis " (notice the quotes ha ha) for my 3yo son Caleb. It will be a few months though. In the meantime I'm reading as much as I can and learning as much as I can. He seems to fall on the PDD spectrum, near the high end, but in reading " The Out-of-Sync Child " I'm wondering if Caleb's problems are ONLY SID, not PDD as well (although I know it's possible to have both, and if he DOES have PDD then he'll have SID). Can the diet/enzymes do something with SID ONLY or would he have to have true PDD in order for them to help? Or is only therapy his best bet? > > It's so frustrating not even knowing if I can rely on what the doctors tell me if/when we finally get to see someone. > > Thanks. > > Love, > Kirstin <>< > > Wife to Bobby (7 years) > Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due 4/26/02) > > I sell books kids love!!! > I'm an Usborne Books at Home Independent Consultant! > http://usbornekirstin.tripod.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 I think the saddest part is that we spend so much time qualifying these children based on their outward behaviors when what would probably help them the most is to deal with what is going on inside of them that makes them this way. Our children may outwardly present so differently but if you tested them in biological ways , we see that they have a host of similarities in regards to imbalances within the immune sys, metabolic sys, gastro intestinal tract etc. My child has a chronic illness and at this time, that is how I see him. I am attempting to first make him as healthy as possible and concurrently give him the therapies he needs to catch up etc. There is a reason for what we see outwardly. And making the assumption that they are mild does nothing to heal them. My son presents mildly....his biological tests show that he is CLASSIC! We need knew understanding and new labels. My take on this, Re: just SID and no PDD? > > > We are still awaiting a " final diagnosis " (notice the quotes ha ha) > for my 3yo son Caleb. It will be a few months though. In the > meantime I'm reading as much as I can and learning as much as I can. > He seems to fall on the PDD spectrum, near the high end, but in > reading " The Out-of-Sync Child " I'm wondering if Caleb's problems are > ONLY SID, not PDD as well (although I know it's possible to have > both, and if he DOES have PDD then he'll have SID). Can the > diet/enzymes do something with SID ONLY or would he have to have true > PDD in order for them to help? Or is only therapy his best bet? > > > > It's so frustrating not even knowing if I can rely on what the > doctors tell me if/when we finally get to see someone. > > > > Thanks. > > > > Love, > > Kirstin <>< > > > > Wife to Bobby (7 years) > > > Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due > 4/26/02) > > > > I sell books kids love!!! > > I'm an Usborne Books at Home Independent Consultant! > > http://usbornekirstin.tripod.com/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 I think the saddest part is that we spend so much time qualifying these children based on their outward behaviors when what would probably help them the most is to deal with what is going on inside of them that makes them this way. Our children may outwardly present so differently but if you tested them in biological ways , we see that they have a host of similarities in regards to imbalances within the immune sys, metabolic sys, gastro intestinal tract etc. My child has a chronic illness and at this time, that is how I see him. I am attempting to first make him as healthy as possible and concurrently give him the therapies he needs to catch up etc. There is a reason for what we see outwardly. And making the assumption that they are mild does nothing to heal them. My son presents mildly....his biological tests show that he is CLASSIC! We need knew understanding and new labels. My take on this, Re: just SID and no PDD? > > > We are still awaiting a " final diagnosis " (notice the quotes ha ha) > for my 3yo son Caleb. It will be a few months though. In the > meantime I'm reading as much as I can and learning as much as I can. > He seems to fall on the PDD spectrum, near the high end, but in > reading " The Out-of-Sync Child " I'm wondering if Caleb's problems are > ONLY SID, not PDD as well (although I know it's possible to have > both, and if he DOES have PDD then he'll have SID). Can the > diet/enzymes do something with SID ONLY or would he have to have true > PDD in order for them to help? Or is only therapy his best bet? > > > > It's so frustrating not even knowing if I can rely on what the > doctors tell me if/when we finally get to see someone. > > > > Thanks. > > > > Love, > > Kirstin <>< > > > > Wife to Bobby (7 years) > > > Momma to Grant (4.5), Caleb (3), Libby (1.25), and " Lil' Bit " (due > 4/26/02) > > > > I sell books kids love!!! > > I'm an Usborne Books at Home Independent Consultant! > > http://usbornekirstin.tripod.com/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 > Here is the article by Dr. Rimland regarding the PDD diagnosis: > > http://www.autism.com/ari/editorials/pdd.html > You know what's funny? I actually was angry at the dev. spec. for dx my daughter PDDNOS instead of autistic. I wanted her to get the benefits the autistic lable carried with it as far as services go. BTW, he said in my state PDD and autism are the same. I told him I thought the PDDNOS lable was a joke and that was just what drs. said when they didn't know. See how smart I was before I ever started researching? LOL I sent him this article and asked for his reply. Never got one. Ha. I will bring it up when we see him again in March just to make him squirm. LOL Janelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2001 Report Share Posted November 12, 2001 > Here is the article by Dr. Rimland regarding the PDD diagnosis: > > http://www.autism.com/ari/editorials/pdd.html > You know what's funny? I actually was angry at the dev. spec. for dx my daughter PDDNOS instead of autistic. I wanted her to get the benefits the autistic lable carried with it as far as services go. BTW, he said in my state PDD and autism are the same. I told him I thought the PDDNOS lable was a joke and that was just what drs. said when they didn't know. See how smart I was before I ever started researching? LOL I sent him this article and asked for his reply. Never got one. Ha. I will bring it up when we see him again in March just to make him squirm. LOL Janelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 In a message dated 11/12/2001 10:35:36 AM Pacific Standard Time, kreeder@... writes: > This is what confuses me - which is which? Which issues would be considered > " only " autistic and not SID? Thanks! (No your story didn't scare me at > all. :-) ) > > Kirsten: We also visited several " experts " who gave us some conflicting information. The way I understand the definition of autism (or PDD) is that the child has to have some form of sensory dysfunction (i.e. hyper- or hypo-sensitivity to sound, touch, etc.) as part of the diagnosis. If I'm wrong, someone please correct me. What I would recommend is try to read as much as you can on the subject. That helped me know what questions to ask. Now I'm educating my pediatrician!! Sometimes you need to see several drs. before you find one that really understands and knows the disorder. Good luck. Lucy, mom of Billy, 5 yo, ASD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2001 Report Share Posted November 13, 2001 Kirsten, Good question-I think if you have a diagnosis on the AS then people assume the sensory goes with it. Kathy Quote Link to comment Share on other sites More sharing options...
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