Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Yay Tricia!!!! That's fantastic!! Thank you so much for sharing that. I can understand how that could be a very scary feeling after everything you have all been through, and yet on the other hand--what a relief!!! Those mixed emotions can be so strange to work through. One question though....with the IEP and the schools--why wouldn't you have any say in who his teachers are and the discipline methods used? You pay your taxes and they work for you, are they really that arrogant that they don't listen to the parents and what you want for your kids?? I'm not saying that to be mean, I'm just puzzled about that. Bisel WOW! What a journey this is! > > > > Tricia Morin > > > > Mom to the greatest kids in the world! > > Board Member www.speech-express.com > > Outreach coordinator www.cherab.org > > Co-moderator > > Board member Equus Heals animal assisted therapy > > http://www.homestead.com/equusheals/ > > Co-Founder SPEAK, St. Louis Parent Extension for Apraxic Kids > > http://www.speech-express.com/communication-station/missouri- speak.html > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Go, ! What a great update! Keep up the great work, you guys! Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Wow! What an inspriration your son is! As the mother of a 2 1/2 year old autistic and apraxic son, I sometimes feel despair that things will ever improve. It's reading wonderful stories like yours that gets me through each day. There's hope on the horizon yet. Thanks so much for sharing. And tell what an aweseome little man he is! Best, Pam O'Connor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2005 Report Share Posted September 22, 2005 i would bet buckets that its mold esp if his IgE is increasing and he is on pred. Pred lowers IgE and that is one way of getting into the dosing range that ppl have written in the literature about. As for sleeping, benzodiazepines (rivatril 0.5mg) is what saved me from chronic insomnia. Habit forming yes but you need to sleep to get better.... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 i'm glad your getting " somewhere' with your son -- even if it is into " unchartered territory " . i'm sure no parent wants their kid to be sick, but getting a diagnosis is half the battle, so i'm told. (i say this as a mom of 2 year old twins cried on my shoulder today, b/c they cannot figure out what their disability is - we suspect muscular dystrophy, but nothing is showing up with chromo. tests and muscle biopsy...all she wants is a diagnosis, so she can deal with it) reflux may in fact play a large role. i know it did for me. even if his endo is " normal " , ask if they'd consider putting him on a month or two trial run of something (protonix? pepcid? nexium?). you just never know. as for sleep - i've had asthma since i was about 2, and i was a poor sleeper before then. my mom says as an infant i never slept. in the last 5 years or so, i'm lucky if i get three or four hours a night. the prednisone can definately keep him up. i'm told melatonin can make nighttime asthma worse (i can find the article if you want). i've tried ambien (i realize a little boy wouldn't take that) with no success. benedryl makes me hyper. as a kid, the only thing that helped me sleep was atarax - i was originally prescribed it for itching (eczema). i was recently prescribed it, and i'm finding the nights i take it, i'm sleeping a little better. maybe you can ask for that. fortunately, there's a generic form, so the copay would be minimal, so its not a big (financial) risk if it doesn't work. i wish you luck, and improved health for your son. please keep us posted heather ipedlnpadl <IpedLnpadL@...> wrote: Thanks for all the great advice. We have all hardwood floors. This is So.Cal. so the humidity is minimal. I am getting a mold inspector in though because I was told it could be in the walls, under the house, ceilings, etc.. They are doing an upper GI on him tomorrow as they strongly suspect reflux. Also, he's going in for a bronchoscopy next week. They suspect aspergillis(sp?) mold may be a culprit. He is on so many strong meds though that he suffers from horrible insomnia. We've tried the melatonin, valerian root, benadryl program with little success. How about the rest of you out there on all these meds? How do you sleep? They did another Ig E test because the insurance companies like to see lower numbers which is confusing to me. The doctor felt his would be down from 2300 since he's been on prednisone for a week. Unfortunately, it was up to 2800. I think it's an issue in that the original testing of this med was done on people with Ig E levels from 35 to 700 and the insurance companies use the excuse of it not being safe for people with higher levels. We have not heard back from Blue Cross as of today, Thursday. He's in the hands of an Allergy Specialist and Pulmonary Specialist. They have both pleaded his case to Blue Cross. Keep your fingers crossed. This boy deserves a life. Thanks again for all the helpful tips and information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 Thanks, I do appreciate all the input. Quite frankly, his attacks terrify me but I try to keep a stone face and cool demeanor. He had 3 bad ones today. His barium swallow is tomorrow. They put him on Prevacid and metoclopramid. He's complaining of stomach cramps since being on it for 24 hrs. What I'm dealing with is here it is the week- end and he can't be with his friends. They just called to tell him they won the game and he hung up and was very happy and very sad all at once. He begged me to let him go back to school but the Pulmonologist said " no, too dangerous " . Here is this big, hulking 5'10 " 197lb. biggest, baddest player on his team having to allow himself to be treated like...well...bubble boy! But I do have real concern of him being around others and getting a cold. When the Allergy and Pulmonary specialist both tell you he is a rare case indeed; that gives you pause for thought and concern. I will let you know what his tests point towards as they are medical detectives now. Previously, they've treated symptoms. Now they need to go after the cause. > Thanks for all the great advice. We have all hardwood floors. This > is So.Cal. so the humidity is minimal. I am getting a mold inspector > in though because I was told it could be in the walls, under the > house, ceilings, etc.. They are doing an upper GI on him tomorrow as > they strongly suspect reflux. Also, he's going in for a bronchoscopy > next week. They suspect aspergillis(sp?) mold may be a culprit. He > is on so many strong meds though that he suffers from horrible > insomnia. We've tried the melatonin, valerian root, benadryl program > with little success. How about the rest of you out there on all > these meds? How do you sleep? They did another Ig E test because the > insurance companies like to see lower numbers which is confusing to > me. The doctor felt his would be down from 2300 since he's been on > prednisone for a week. Unfortunately, it was up to 2800. I think > it's an issue in that the original testing of this med was done on > people with Ig E levels from 35 to 700 and the insurance companies > use the excuse of it not being safe for people with higher levels. > We have not heard back from Blue Cross as of today, Thursday. He's > in the hands of an Allergy Specialist and Pulmonary Specialist. They > have both pleaded his case to Blue Cross. Keep your fingers crossed. > This boy deserves a life. Thanks again for all the helpful tips and > information. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 Hang in there. I know you and your son and family are frustrated and frightened. PLease let us know what you find out. We're all thinking of you! Addy > > Thanks for all the great advice. We have all hardwood floors. This > > is So.Cal. so the humidity is minimal. I am getting a mold > inspector > > in though because I was told it could be in the walls, under the > > house, ceilings, etc.. They are doing an upper GI on him tomorrow > as > > they strongly suspect reflux. Also, he's going in for a > bronchoscopy > > next week. They suspect aspergillis(sp?) mold may be a culprit. He > > is on so many strong meds though that he suffers from horrible > > insomnia. We've tried the melatonin, valerian root, benadryl > program > > with little success. How about the rest of you out there on all > > these meds? How do you sleep? They did another Ig E test because > the > > insurance companies like to see lower numbers which is confusing > to > > me. The doctor felt his would be down from 2300 since he's been on > > prednisone for a week. Unfortunately, it was up to 2800. I think > > it's an issue in that the original testing of this med was done on > > people with Ig E levels from 35 to 700 and the insurance companies > > use the excuse of it not being safe for people with higher levels. > > We have not heard back from Blue Cross as of today, Thursday. He's > > in the hands of an Allergy Specialist and Pulmonary Specialist. > They > > have both pleaded his case to Blue Cross. Keep your fingers > crossed. > > This boy deserves a life. Thanks again for all the helpful tips > and > > information. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2005 Report Share Posted September 23, 2005 No sign of reflux, even when they tried to induce it. So...I guess that eliminates that theory. The bronchoscopy is the next one coming up. Hope that sheds a bit more light on why. I don't have asthma. I am a personal trainer and I teach hard core Boot Camp and cycling classes also. I wish, I wish I wish I could trade lungs with him. And since I can go for over an hour doing extremely hard cardio without breathing difficulties, it doesn't seem fair to me. And because I've never experienced shortness of breath, the thought of it is terrifying to me too. When I put the 2 coffee stirrers in my mouth and breathed through them while holding my nose, I almost freaked out. (This was recommended to let you know what it feels like to have an attack) He's just a 14 yr. old kid. How he remains calm if that's what it feels like to have an attack, is beyond me. Much LESS going back out on the field after he's gotten one under control. I've just venting here. He's getting so depressed. > > > Thanks for all the great advice. We have all hardwood floors. > This > > > is So.Cal. so the humidity is minimal. I am getting a mold > > inspector > > > in though because I was told it could be in the walls, under the > > > house, ceilings, etc.. They are doing an upper GI on him > tomorrow > > as > > > they strongly suspect reflux. Also, he's going in for a > > bronchoscopy > > > next week. They suspect aspergillis(sp?) mold may be a culprit. > He > > > is on so many strong meds though that he suffers from horrible > > > insomnia. We've tried the melatonin, valerian root, benadryl > > program > > > with little success. How about the rest of you out there on all > > > these meds? How do you sleep? They did another Ig E test because > > the > > > insurance companies like to see lower numbers which is confusing > > to > > > me. The doctor felt his would be down from 2300 since he's been > on > > > prednisone for a week. Unfortunately, it was up to 2800. I > think > > > it's an issue in that the original testing of this med was done > on > > > people with Ig E levels from 35 to 700 and the insurance > companies > > > use the excuse of it not being safe for people with higher > levels. > > > We have not heard back from Blue Cross as of today, Thursday. > He's > > > in the hands of an Allergy Specialist and Pulmonary Specialist. > > They > > > have both pleaded his case to Blue Cross. Keep your fingers > > crossed. > > > This boy deserves a life. Thanks again for all the helpful tips > > and > > > information. > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2005 Report Share Posted September 24, 2005 This is just an idea - you might have a respiratory therapist get together with one of your son's coaches. There are probably some breathing exercises he can be doing to increase lung capacity as well as to increase oxygen intake during/following an attack. There are a couple that I do that I got out of a book called (I think) Reversing Asthma...if I can find that book around here somewhere I'll post them. It is not uncommon for serious asthmatics to experience depression. As for staying calm, it's just the best way you can keep breathing. Good luck, Addy > > > > Thanks for all the great advice. We have all hardwood floors. > > This > > > > is So.Cal. so the humidity is minimal. I am getting a mold > > > inspector > > > > in though because I was told it could be in the walls, under > the > > > > house, ceilings, etc.. They are doing an upper GI on him > > tomorrow > > > as > > > > they strongly suspect reflux. Also, he's going in for a > > > bronchoscopy > > > > next week. They suspect aspergillis(sp?) mold may be a > culprit. > > He > > > > is on so many strong meds though that he suffers from horrible > > > > insomnia. We've tried the melatonin, valerian root, benadryl > > > program > > > > with little success. How about the rest of you out there on > all > > > > these meds? How do you sleep? They did another Ig E test > because > > > the > > > > insurance companies like to see lower numbers which is > confusing > > > to > > > > me. The doctor felt his would be down from 2300 since he's > been > > on > > > > prednisone for a week. Unfortunately, it was up to 2800. I > > think > > > > it's an issue in that the original testing of this med was > done > > on > > > > people with Ig E levels from 35 to 700 and the insurance > > companies > > > > use the excuse of it not being safe for people with higher > > levels. > > > > We have not heard back from Blue Cross as of today, Thursday. > > He's > > > > in the hands of an Allergy Specialist and Pulmonary > Specialist. > > > They > > > > have both pleaded his case to Blue Cross. Keep your fingers > > > crossed. > > > > This boy deserves a life. Thanks again for all the helpful > tips > > > and > > > > information. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Hi - We took my son off it once for 2 weeks and then my son put him back on it secretly. I could tell within 6 hours - and called him and told him that I had figured it out. And my son swallowed the pills, so there was not tell-tale fishy cup! Later, we tried him on it again after about a year. He was on it for a week and we saw a lack of patience and that he easily turned on the tears, but there wasn't the full-out tantrums- but he was also older. It also didn't affect his speech at all - it was no better and no worse. I'd wait an entire month and do it when there's no other factors involved. I also believe that there's a disruption to the sleep cycle involved with the weepiness and tantrums, so be sure he has the opportunity to get a good night's sleep. Good luck - Marina -- In , Grassia <miche@...> wrote: > > I wrote just over a week ago about my son and his sad mood and regression > in spontaneous language that has lasted a while. I want to thank everyone > who wrote me offlist. I started writing replies, but then my hectic life > got the best of me and I never went back and sent them! > > I ended up stopping the ProEFA to see if that made a difference. His > sadness had started around the time I reintroduced them after a month break > when he had a bad stomach flu and it had continued for 2.5 months. Within > two days of stopping the fish oils his mood improved. He stopped crying > when dropped off at school and the second day off fish oil his teachers > said he spoke more and more clearly than they have heard him all year. He > had a great afternoon speech session as well, in fact his last three > sessions have been wonderful and filled with spontaneous language! Friday > he participated in his dance class and the same thing yesterday (it had > been several weeks of cowering in my arms prior to last week.) He's not > crying at home anymore either. > > I have no idea if we're one of the rare ones that has bad side effects or > what. To check I'm going to keep him off the ProEFA for a while longer and > reintroduce it and see if he gets sadder, clingier and weepier again. If > it is due to the oils I guess it isn't too huge of a loss. Aside from the > initial week when his verbal attempts quadrupled we didn't see any surges > or major improvement in the 7 months he was taking them. Hopefully I'll > find out in a few weeks when we reintroduce them. I want to make sure that > it is the fish oils causing the crying and not just that he suddenly > clicked things in place and it happened to coincide with stopping the fish > oils. He's had plateaus before a book in the past, but never with these > mood changes too for this long of a period. > > For anyone who has stopped for a potential negative side effect then > restarted what time period have you done for the " break " ? I was thinking > two weeks, but then his grandparents will be back in town after a long trip > around the end of the month and I want to be a bit scientific about this > and not restart the oils when something else major is happening in his life > too! I was thinking of waiting a full month - two weeks to clear out of > his system some and then another two to adjust to gma and gpa being back in > his life daily (well in person which is different than regular phone calls.) > > Miche > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 I posted a few of your archives from the first you ever posted here, to most recent to see if any answers lie in them. In quickly looking over them it appears your child had a surge in 3 days of taking one capsule of ProEFA at around 4 years old. When he hit the plateau you were not sure if you should increase to two capsules as you were waiting for the 6 month point. Doesn't appear that you ever did increase -did you? One capsule of ProEFA is about equivalent to the dosage the FDA approved for infant formula, so extremely conservative dosage wise for a 4 year old. We've noticed in this group that most older children around 5 and up do need at least two a day to acquire the more dramatic surges seen in the 2 and 3 year olds starting at the one a day. Also even though it took my son Tanner 6 months for his first plateau, the typical time is around 3 to 6 months. We can follow what has worked for years in this group, but as time goes on we learn more and more, which is a good thing. More recently in this group there has been another exciting change in dosing which appears to be a much better way to go for at least those who have tried it so far. 's child at 2 and a few others are multi dosing a few capsules worth 3X a day with reported even more dramatic -even more accelerated progress. What is using however is more typical of the amount of EFAs used in research by both Dr. Stordy and Dr. . In this group we've always kept the dosage low and gradually over a year's time increased to about 3 capsules a day because anecdotally that worked -but that doesn't mean that low dosage is always the best for all. Especially for those that are older and/or hit a plateau it appears that higher dosages even raised gradually, may be beneficial. I'm curious now for those children that didn't respond (or as in your child's case stopped responding) what gradual higher increases would do. It's easy enough to find out as long as a child isn't allergic to fish oils of course. In most cases as Marina just reported within a day to 3 weeks you'll notice the changes. I'd run the following by the professionals that work with your doctors. (coincidentally just when you started PROMPT was about a month after you started seeing the accelerated surges from the ProEFA -run by Deborah Hayden too if you are still working with her) I know that you have the approval from them already for the fish oils, but perhaps discuss the latest behaviors with them if they don't know about them already. In March of 2006 you wrote, " I've been stumped with my son's behavior changes the last two months. Sometimes I think it's related to not being able to express the more complex thoughts he has, but that doesn't seem to answer it all. He's 4.5 and his expressive language is around 17 mo to 2.5 yrs depending on which test, approx 200 single words, still telegraphic speech, but /just/ starting to tie together 3-5 word sentences on odd occasions when he's not thinking about talking. " If Tanner is off his oils he regresses as I've posted, and only once as reported did we leave him off for a week which was a nightmare and that's when he exhibited the behaviors you see in your son on the one capsule of ProEFA. (this was due to his IEP testing as reported in the book The LCP Solution " It was the saddest thing. We will never do that to him again. The poor little thing was no longer able to say as much, and he just didn't seem to learn. He wasn't able to 'parrot' us like he had when taking the supplements. And for the first time he was frustrated to the point of tears. " http://www.drstordy.com/stories.html ) Even if that's not the reason for your son, there is no doubt in my mind that is what caused the behavior in my son Tanner. He was aware of what he was not able to do anymore. In the archives I describe it like he had it -and suddenly it was gone. I know most may view your message as a negative -but given your child's history (which is why I posted the archives) I actually think frustration is a good thing -especially since your child's receptive ability had been in question by various professionals. Perhaps ...the one capsule (?) of the fish oils are causing the crying and clinging behaviors because the amount is just enough to make him aware of what he isn't able to do, as you wonder, but not enough to help him do anything about it. The fish oils initially created surges in your child but again once you hit the plateau you wanted to wait 6 months to go to 2 a day. Since your child is older and the range is typically 3-6 months for the first platue -to me it's clear that stopping them, or starting them again at one a day may not be the answer. I am suggesting trying a slightly higher dosage to start (for example two vs. one) rather then stopping them or going back to one a day for a 4 1/2 year old. I wouldn't suggest this if they never worked, but because they did " work " for your child initially and because it appears he still has a ways to go. If you raise the dosage a bit to try that, you can go slow and go from there. You'll know within a few weeks if it's a good thing or not. Marina had posted that even though the ProEFA created surges in her son's speech to start, that once her son's speech was fine that the ProEFA caused behavioral issues and taking him off and putting him back on made no difference in his speech. She was the first to state this, and I had wondered here if it was because he no longer needed the oils for some reason? Marina's a chef and perhaps he gets all he needs from a healthy diet -something most of us don't get into our kids. In your child's case it sounds like he still needs a great deal of help with his speech, so doesn't sound the same in that matter. Best to you and let us know how it goes. Below are again some of your archives to see if any answers lie in them: From: Grassia <miche@...> Date: Sat Jul 16, 2005 2:47 am Subject: New Member Intro - what do you do when a diagnosis doesn't fit? miche37 My son will be 4 in September and he has a severe speech and language delay. That much we all agree on! He's been working with a SLP since he was 2 with very little progress. 16 months ago he was evaluated by a multidisciplinary team and diagnosed as moderately autistic. From the start we strongly disagreed. A second opinion by a pediatric neuro did not confirm the first diagnosis, and the additional therapists he was given through EI haven't helped either. The original eval said he has SI disorders, but we and his OTs have disagreed. A second visit to pediatric neuro gave us a vague general diagnosis. She said he had a developmental language disorder which could be due to many conditions from mild autism to auditory processing disorders, language dyspraxia, epileptic aphasia and minor developmental brain malformation. How's that for being specific? Her point was that it's more what we do about it than what we call it and I do agree, but what we're doing doesn't seem to be working and the schools really DO care about what we call it!!! To me verbal apraxia has always seemed to be the best fit. I'll expand with details on why we don't agree with moderate autism and why we see apraxia if anyone wants to hear it. What has been my biggest worry that he needs more directed therapies than what he has gotten. Initially his SLP said that she couldn't do typical apraxia therapies (even though she thought it could be apraxia) because of his age and lack of cooperation, but now he is older and much more cooperative! His SLP is out of the picture now (moved - we'll miss her support!) and the EI center doesn't have a replacement so he will get no more speech until after his IEP at the start of the school year. At this point I am searching for a more accurate diagnosis and I don't know where to go. The original team won't reevaluate him because he is over age 3. The schools won't evaluate him until he's in K, yet what they are offering at his tentative IEP is not appropriate. They are offering one hour of group speech and one hour of group OT (which he doesn't even need) and 20 hours per week in an " inclusive " program. Their definition of " inclusive " is having 1-2 typical children in a class of 8-10 kids total! His pediatrician and therapists say he needs 80-100% typical peer models due to his learning style (almost exclusively visual learning.) We're going to argue for outreach services to his private preschool because the public school program isn't the " least restrictive environment. " He's doing great in " full inclusion " at the private preschool btw. But at the IEP in May they wouldn't bend on that. I am confused and frustrated. I want what is the best for my child and honestly I'd be fine with the autism label if it seemed to fit him better and if the services he was getting seemed to be helping, but they don't. I have no idea how to go about getting a more accurate diagnosis. I know a diagnosis online is impossible and that's not what I'm asking for, but I'd love any suggestions on where we could go next. I would appreciate any recommendations for physicians or therapists and especially support groups in New Mexico (greater Santa Fe or Albuquerque area.) I'd love and suggestions on programs (formal or informal activities) I can do with him at home. His cooperation level is improving and I feel we can move beyond play based labeling and support. I'm happy to share more specifics about his speech and language as well, but I didn't want to make this too long! From: Grassia miche@... Date: Wed Aug 17, 2005 10:09 pm Subject: Need IEP advice and report on PROMPT eval We had our initial eval at PROMPT today. He cooperated well for 40 mins (total eval was about twice that including some fun swing time at the end) and was more verbal than I've ever seen him be with a therapist. He needed less modelling than when I'm working with him at home, but then when he gets in any kind of a therapy environment he instantly speaks " therapyese " as I call it. Where anything and everything the therapist says he just parrots back in a singsong tone. It's trained, not true echolalia because he doesn't do this at home unless I'm " working " with him and modelling in a sit down (aka non-natural environment) and trying to get him to repeat. About 40 mins in he was DONE, but he still sat and feigned attention. His receptive language just disappeared. He did not or could not understand anything and just repeated words poorly, even questions that were asked he would just reply back with the last word, ie. " Do you have a cat? " Reply: " ahht? " I did explain that he was done cooperating and that it was not typical. The therapist wants to see him again next week same time to do more evaluating. She didn't ask me any questions at all which I found odd, but the session was video taped and Deborah herself will review it and plan a therapeutic approach with the other clinicial (who is fairly new) and I'm assuming we'll discuss more after the next eval? I did give her all the reports we have gotten, ECEP eval that diagnosed autism (complete with my comments refuting their reasoning) pediatric neuro reports that mentioned everything under the sun as possibilities, therapy reports from early intervention. They asked I mark them up with a red pen to show progress since they were done or places I disagree with the assessment. Oh he also had very little eye contact during the eval with the therapist. He was more fascinated with watching himself on the video recorder! And he also avoids eye contact with new people who he knows are testing him. He normally has decent eye contact with strangers unless he's focusing more on the mouth of the speaker. He didn't do that at all today and his articulation was worse due to that. Of course they haven't done the final report, but she did mention verbal and oral dyspraxia in our BRIEF discussion after. I knew he had some signs of oral, but I thought he moved past them (didn't drink from a cup or blow out candles or blow bubbles until age 3, didn't pucker and smack with a kiss until earlier this year around 3.5 yrs of age and he still stuffs a lot of food in his mouth and uses his fingers to push in things like long noodles.) I was amazed to see that he could not move his tongue up very well if he was first sticking it out then trying to go up, and he could not put his tongue to the back of his front teeth. He could lick his lips, but not in quite the same way as she was modelling, and he could not go from smiling to blowing a kiss without a big pause in-between. She also noted weakness in his muscles and cheeks (he does not have low muscle tone in his body) and he still has the " sucking pads " on the inside of his cheeks? Anyone know what that is or could mean? It stumped her and she was going to ask Deborah about it. Could it be related to the fact that he didn't wean until this year? She also said that his articulation would clearly qualify him for therapy (with insurance) but thankfully we don't have that issue. Due to a skull fracture at 5 mo of age our insurance is covering therapy (with a $15 copay) since it is " medically necessary. " The clinician also noticed some receptive language delays which I was aware of. He does fine with most verbal instructions that are simple, but sometimes needs non-verbal cues. He does not answer WH questions except for where ones like " where is the cat? " He will point to it. His receptive is still VERY high compared to his expressive. Both are clearly delayed, but expressive if much more significant. So moving on from the PROMPT eval we now have the public schools. I had a meeting with the new IEP coordinator and the principal of the school to discuss a run-in I had with the pre-K teacher at our last two IEPs. I had another horrible run-in with her when I went to register my child last week. The principal immediately assured me (before hearing my complaint!) that we would have a different teacher at the next IEP which has been tentatively scheduled for Sept 2 (my birthday and the day after my son's! Happy birthday to me. ) The problem is the school is still saying they have no outreach. The private preschool environment is perfect for him. He has friends who he mentions at home (a first!) He is thriving socially (which is BIG for a child who supposedly has autism) and I am not willing to pull him out of there for a public school pre-K that has only 25% typical peers. At the private school it will be 9 kids and a 3 to 1 ratio of teacher/parent to child. There two teachers both with masters in early childhood, one with a master in special ed and 34 years of teaching experience at this school that she co-founded! The cofounding teacher really " gets " my son and he adores her. He hasn't met the other teacher yet as she wasn't there for summer session. There will also be at /least/ one parent participator every day as it is a co-op school. So the public school is saying he can still go there, but then I have to send him four afternoons a week to the (essentially) special-ed school. Technically they meet the law because they aren't getting enrollment of typical children, but when it really comes down to it you can't call it an inclusive environment which is what my son needs! What I am asking for is that he attend the private school and the public schools pay for it. That he has an outreach SLP at least twice a week OR that they pay for PROMPT. I want him to continue to see the autism specialist who will help him build VERBAL social skills at school and help him with verbal communication repair to further facilitate the social communication skills he has. And if they still want to do OT I'm ok with that although my son doesn't really need it at this point. He may need it again in the future as more demands are put upon writing skills. He has some very minor motor planning issues with pre-writing skills (not severe enough to be considered motor dyspraxia), but according to the sensory specialist we saw a few weeks ago (on two separate occasions) he is at age level with fine motor skills and has no sensory issues. This isn't asking a lot as there is already a child at the SAME preschool who is attending more hours (on different days) and getting the tuition paid by the public schools and is getting a SLP and OT and five hours with the same autism specialist. She has the same diagnosis (autism is all we officially have at this point.) There is also another child at another private preschool in town who is getting his tuition paid for as well. So I guess at this point I need suggestions on how to get more and more appropriate speech therapy for my son. Right now his IEP from May says 1 hour of small group speech and 30 mins of direct group OT and 30 mins indirect (ie classroom support.) Also how do I effectively argue for a least restrictive environment? What are the best studies to show that one-on-one therapy is necessary? From what I understand in talking with the other parent of the child at the private preschool is that she came in prepared with studies on autism and the specific sub-condition her child has and was able to argue based on that. I'm switching back and forth between anger (at the schools, not at my son's communication problems,) crying, feeling drained and floppy (like a wet noodle if that makes sense) and just wanting to give in to make it all end (which I know is the depression and I know is NOT the answer!) I'm not usually an overly emotional person. I am extremely professional when I need to be, but somehow the schools here are so good at knowing EXACTLY what button to push to roll over me. And I HATE HATE HATE that I feel like it has to be a fight, but after being completely bullied at the last two IEPs we had I don't know how else to feel (not my words, but the words of his case manager.) This one should be a little better because we'll have a different special ed teacher there, but I still feel like it will be an us vs. them situation. Then I'm just feeling overwhelmed. How am I going to find the time to homeschool my older son (who is 6, gifted although he has never been tested, doing mostly 2nd grade work aside from reading and who has attention issues so I really need to spend time with him, one of many reasons he's not in public schools here - have I mentioned our public schools rank #49 in the nation?) On top of that I don't think my 4 yr old who has never been in daycare needs to be away from me full day twice a week and half day the other days. I even noticed this summer that it was difficult because he cannot tell me what happens when I'm away from him and it makes it very difficult to figure out why he's withdrawn or over excited, etc. And this was with good communication from the preschool teachers which I don't think I'll get from the overwhelmed public school teachers. I'm afraid frustration (which shows up as withdrawal and depression not tantrums or behavioral issues) will happen if he is away from his brother and I this much. We are his connection with the world because we completely understand him (especially his brother!) Sorry for writing an novel here. If anyone made it to the end I'd appreciate ANY suggestions! I'm really at a loss and feeling like I'm having a nervous breakdown trying to deal with this, but at the same time I can't NOT think about it when I just try to relax. I wish I had the money to pay for all private therapies and private schools, but as is we're digging into non-existent savings so I have to make things work with the public schools. Miche From: Grassia miche@... Date: Tue Aug 16, 2005 6:28 pm Subject: Re: [ ] Re: what is de difference between Just wanted it to be clear that I didn't ask the original question about the differences, that was . The way replies to my replies have come through it looks as if I wrote the original. My son was diagnosed " moderate autism " by a multidisciplinary team which included a SLP, OT, congnitive specialist and pediatrician. I think they got it wrong! A second opinion with a pediatric neuro neither confirmed nor refuted the diagnosis as he in her opinion was too young to test. The possibilities she mentioned were mild autism, apraxia, auditory processing disorder, epileptic aphasia, etc. Basically everything in the book! The one thing she was clear on is he was not mentally retarded (something the initial team felt was the case - they said " cognitively impaired " which he is NOT! His therapists now all think he is actually brighter than average.) I definitely feel that initial team was looking to diagnose him as autistic and found things they thought fit. Everything that to ME I now see as common with apraxia they saw as a " red flag " for autism. It may be that he has both apraxia and mild autism. It may be he doesn't have apraxia at all - we go for an eval at PROMPT tomorrow! I hate to say I'm hoping he has apraxia, but I think you all know what I mean. I hope that whatever it is called we feel is accurate. We don't get this feeling about autism and he hasn't responded well to the autism therapies, nor has he made much improvement related to speech therapies either and he's been going for two years! I just spoke with my son's private preschool teacher at length today (she feels it is autism.) She said that he will walk up to a group of children who are playing and with non-verbal means make it clear he wants to join their game and they will accept him. That is not something you see a child with " moderate autism " do. A child with autism may join in play when offered, but has difficulties initiating play, and rarely will join an established group in play (according to this teacher although I have heard the same from many others.) Miche From: Grassia miche@... Date: Wed Jan 4, 2006 10:19 am Subject: Re: [ ] PROMPT (was Our IEP woes) miche37 >Can you, if you don't mind, give me your opinion as to how you see PROMPT >helping your child as opposed to " regular " speech therapy?? For my son it is exactly what he needs. Two years of " regular " speech therapy and he made hardly any progress. Labelling everything just taught him what it was without teaching him HOW to say it. When Deborah herself works with him she can run her hand back and forth over his mouth so fast that he can speak a full sentence. His other therapist obviously isn't as skilled, but she helps him prompt parts of the word. For instance he says " soga " instead of " soda " so she prompts him by touching under his chin right under his jaw to tell him to bring his tongue forward more for the D. At other times he will make a g or k sound instead of a d or another sound. In those cases she will touch him at the back of his throat to prompt the sound to come from there. I have to laugh because in some ways I am the same way. When I was giving birth to him I wasn't pushing right. The nurse prompted me to push differently by placing pressure on my perineum and it was all I needed to focus further back and he pretty much popped out! Funny the parallels we think of. He has started prompting himself for the M, K and G sounds and a few others. He used to call me Tommy (his brother) because it was hard for him to get that M out at the front. When he thinks of it he now touches his lips to give himself the tactile cue to keep them together and make the M sound. From what I understand most kids don't start self prompting, but he has been a little. If he asks for something like a cookie and the answer is no he'll come over and put his hands on my face and try to prompt a yes out of me! It's so funny! The way I think about the theory is with the tactile prompting and repetition he starts to FEEL where the proper placement of everything is to make the speech sounds properly. Also in his case by saying things properly he is storing language better and his receptive is improving some as well (he has some receptive delays as well, especially with auditory input.) In August before we started PROMPT he had about 150-200 words that were used infrequently, under 50 that he used with any frequency and most of those were animals. Most were single nouns, some single verbs. Now he is regularly using 2 word phrases and starting to string 3-4 words together to express ideas instead of just labelling. The words he had he is pronouncing better and more consistently. He is also speaking with more confidence. It hasn't been an overnight miracle, but the progress has been steady. In the past when he made progress it was in spurts and seemed unrelated to the speech therapy. Now I notice a direct correlation. He works on some sounds and words and then I hear them more often at home. Miche From: Grassia <miche@...> Date: Wed Jan 11, 2006 9:54 pm Subject: RE: [ ] Re: question-omega half lifes miche37 I wonder if it is absorbed more efficiently when taken in multiple dosing. You know too much of one thing at once and so much gets wasted. On that topic, I started my son on proEFA about 4 months ago. We stopped for a week in early Dec. due to a bout of a horrible stomach and intestinal flu that went through all of us. He wasn't keeping anything down so I couldn't imagine giving him anything oily to eat! With all the craziness in our lives since then I've only remembered to give it to him sporadically until a few weeks ago. Initially we noticed an increase in his verbal attempts after just a week, but that seemed to stop after about 6 weeks. I've heard I should up the dosage after six months. It hasn't been as long for us, but would it still be worthwhile to do twice a day this early? Miche From: Grassia <miche@...> Date: Wed Aug 24, 2005 9:38 pm Subject: Re: [ ] Speech Delay - Is There Really Such a Thing? miche37 My oldest had strictly a speech delay. He, like my younger child had no interest in learning to sign or compensate for lack of language in other ways (what I think is a personality trait for them both.) Unlike my younger he threw monster tantrums when he wasn't understood and we had other behavioral issues such as a complete lack of impulse control! He also had some sensory issues that didn't really interfere with his life (didn't like feet on pj's or anything tight on his wrists - both things I hate and both things he has mostly grown out of and could also be attributed to allergies and eczema.) Basically if you go down the diagnostic criteria that was used to diagnose my second son with autism my oldest would have " scored " higher! He's now 6 and speaks like a little adult. His vocabulary is immense and the only thing that is a little different is his energy level. Many pseudo professionals try to tell me to get him evaluated for ADHD, but it's more an energetic and easily bored boy thing than ADHD. He CAN concentrate for hours not minutes if he is interested in what he is doing. He's the best behaved and most on task student in his dance classes even after skipping up to the next level with 8-9 yr olds. He JUST turned 6! We homeschool him and while many days it is pulling teeth to get him to do ANY work overall he is mostly at second grade level (in all but reading where he's just ahead of your average first grader.) My second child was given a diagnosis of moderate autism at age 2.5 after a 2 hour exam in a chaotic crowded noisy environment. Since then specialists have neither confirmed or denied the diagnosis, but all have said if it is autism he is extremely high functioning. The therapist at PROMPT today said that she sees " some Aspergers " which really confused me because I was told by the university team that Aspergers never has a speech delay component. I think it was this therapist's way of saying very mild autism? Unfortunately I couldn't question her as I had to be at a training for work and my mother was the one who she told this to. The difference I see between my kids is that my oldest was never tested by " the professionals. " I am convinced that if the same team had seen my older son at the same point in life he would have been given a diagnosis of autism and sensory disorder as well and there is NO way that it fits him. (The sensory component of my younger son's diagnosis has been clearly debunked by a SI specialist earlier this month. I have always known he did not have sensory issues.) I believe that many (not all) professionals are quick to diagnose autism when a child is not at age level in speech. The team that diagnosed my son acted like we should bend over backwards thanking them for making more services available. Unfortunately the services which were not always appropriate did have a cost. Not monetary, but it took a lot of time away from our family and just normal life and play and added a lot of stress. In hindsight I would don't 2/5 of the therapies we had and pushed for a change in the kind of speech he was getting because two years should have shown more significant improvement than we've seen! Miche From: Grassia miche@... Date: Sat Jan 28, 2006 2:29 pm Subject: Question for those with autism diagnosis miche37 Who gave the diagnosis? Was it a team or a psychiatrist? I'm particularly interested in people who were diagnosed around age 4. My son was diagnosed by a team at age 2.5. We have always questioned the diagnosis, but the schools said we had to accept it for him to get any services (even though he also has a speech and language issue - formally diagnosed at age 4 as verbal and some oral dyspraxia and a mixed language issue - he also has receptive delays.) Now the schools want to send him within the month to THEIR psychiatrist because they are questioning the diagnosis (oddly at the same time that they don't want to make up the services they agreed to in Sept and never provided!) While I truly believe the diagnosis of " moderate autism " is not accurate I do see slight things that could put him mildly on the spectrum. I also am annoyed that the schools didn't care about accuracy until it served THEIR interests. I have great concerns over a psychiatrist's ability to accurately diagnose a minimally verbal 4 yr old with dyspraxia and significant receptive delays! I've heard of psychiatrists diagnosing 8-10 yr olds, but in the case of my son he just won't understand questions. When he doesn't understand he non-verbally tries to change the subject, or ignores the speaker or just turns off completely. His SLP in her most recent report stated that this could be taken for inattention, but it is basically his coping mechanism to ward off frustration. Therapists in the past have gotten irritated and called him uncooperative and questioned his cognitive abilities, etc. Finally he has people who understand him and he attends fabulously at therapy with the proper supports! He knows he doesn't understand, but rather than asking for clarification he just tunes out. I want an accurate label for him which is why I got on the waiting list at the clinic that is best able to diagnose autism or refute a previous diagnosis. I requested an eval in winter or spring '07 to give him time to improve in speech and language and so we would have a more accurate assessment for the IEP in the spring before he starts K in fall '07 (he'll turn 6 a few weeks after the school year. His bday IS the cut-off date which in this case is great!) MicheFrom: Grassia miche@... Date: Sun Feb 19, 2006 10:31 pm Subject: Re: [ ] misdiagnosis miche37 At 03:56 PM 2/19/2006, you wrote: >Hi, >I am curious as to how many people have children with apraxia and >sensory issues who have been misdiagnosed as on the autistic >spectrum. I believe my son is misdiagnosed as autistic. His diagnosis is not high functioning or PDD-NOS it is " moderate autism. " We already know that that team misdiagnosed him with sensory issues and also initially said he was congnitively delayed until I demanded a meeting with the cognitive specialist! When she saw him again in a better environment she actually had tears in her eyes...she said she had never in her life misdiagnosed a child so severely! And she had a long career. She retired a few months after my son's eval! We've been on a rollercoaster for the last two years. >My daughter is 3 now and is about a year behind in >expressive language though her receptive is age appropriate. My son is almost 4.5 and is 2 to 3 yrs behind in expressive (depending on which test - he has about 200 words intelligible to family with inconsistent pronunciations) and he also has receptive delays, but not as severe as the expressive. His SLP believes that he is not storing language correctly because he is not saying words correctly. We also suspect some auditory processing issues. He does many things non-verbally that are age appropriate, and even with communication he corrects and criticizes which are appropriate milestones for a 4 yr old. This usually consists of saying, " No, not ____. " > She >definitely has sensory issues which we receive ot for and has made >tremendous strides w/ a prompt trained speech therapist. Prompt is what finally started improvement for my son after TWO YEARS of regular speech therapy with virtually no progress! Unlike your daughter he has no sensory issues. He was misdiagnosed with this by the same team that diagnosed him as autistic and he was in OT for sensory issue for a year but it was pointless! >She is up >to multiple word sentences though she is very difficult to >understand. She still resorts to crying (and recently tantruming) >when she is frustrated instead of using her words. She is also >somewhat echolalic (copies what we say) Until recently my son was very echolalic which everyone said was a red flag for autism. I never believed it was echolalia in an autistic way, but that he was trained to do it. Others think I'm nuts, but I feel that with all the speech and other therapies he was trained into knowing he had to give some response so he'd just repeat to be left alone. Now the ONLY times he exhibits echolalia is when he's tired (or as I say, DONE, which happens after 45 mins of very focussed therapy) or when he isn't really paying attention or is uninterested in what someone is saying to him at that time. > She however has a >tremendous interest in socializing with other children and adults >though because of her issues her social skills are weak. She is very >affectionate and also pretty hyper. Hyper can be related to sensory. My son tests one point outside of norm in modulation with respect to movement which basically means if you get him going he's hard to stop and hard to refocus. Usually it is not a problem, but his brother is very active so when the two of them get going...well he's in tears now from being too rambunctious and getting hurt and I have a soaked bathroom floor right now after their bath as an example. All logical thought goes out the window once they get going! >I am wondering about the people who KNOW their children are not on >the autistic spectrum, but KNOW that they have sensory issues and >apraxia. What does that look like? What is the difference? Well I can't say for the sensory because he doesn't have problems there, but the difference I've seen between my son and kids truly on the spectrum is first the behavioral issues. My son has none, autistic kids usually do. From what I've heard kids with sensory issues ALSO have a lot of behavioral issues. The biggest thing aside from that is a chicken/egg thing. My son is delayed socially because he has speech/lang issues. Autistic kids are delayed in speech/lang because they are delayed socially. The autistic child at my son's school can't sit in group time, can't initiate play with others (she does join in if asked) and has to be prompted verbally for speech, but when she talks her speech is fairly clear. My son initiates play, and more importantly has imaginary play. He needs to be prompted for speech multiple times if it is an auditory prompt. If it is a tactile prompt (like with PROMPT) he does it easier. Also autistic kids usually have very little eye contact. This is not always the case, but often is. From the kids I know on the spectrum they have a look...hard to describe, but it's not what I see in my son's eyes. >I am >wondering if we have been somewhat misdiagnosed or if we are just in >denial? She is DEF. not classically autistic, of that we are sure, >but the " spectrum " is just so wide. Any help or experiences in this >area would be greatly appreciated. You can e-mail me privately if >you prefer. I've been told the line " the spectrum is so wide " and been accused of being in denial for almost two years now! My son is at a private preschool (placed there by the pub schools) and we have been fighting the public schools forever about his services. Well they FINALLY sent two observers to his school. One is a social worker and the other an autism expert/consultant. BOTH are now questioning if he is even ANYWHERE on the spectrum. His peditrician has always questioned it, the ped neuro we went to for a second opinion questioned it, his speech therapists (private and through the schools) question it. It infuriates me that when I tried to say I disagreed the school administrators shut me down, accused me of denial and said he would get NO services unless I accepted it. (He was not diagnosed as apraxic until this past August - we're in NM and went to PROMPT and the diagnosis is by Deborah Hayden herself so I trust it!) Now the schools want to get rid of the diagnosis ASAP because they don't want to give him the services they owe him for the last five months (IEP was in May, amended in Sept to double speech and his FIRST hour of speech this school year was last week!!!) They now want to get him evaluated by a psychiatrist. I don't think that a single psychiatrist is qualifed to diagnose him. I want to wait until next winter or spring when our spot on the waiting list with the best clinic in the state comes up. That will be the most accurate re-evaluation for him. At this point the diagnosis doesn't matter because the therapies are appropriate. It took me a long time to get to this point, but now we have things that are working and I don't care what they call it. We'll clear that up in a year. So anyway that is our long saga, but I too have been asking the question for two years about how many kids are being MISdiagnosed with autism these days. Yes, it IS a wide spectrum, but it seems that they apply it to a lot of young kids and then expect the parents to be grateful because it will get them more services. What it got my son was harsh, strict ABA therapy which HURT him, depressed him, frustrated him. And it got people to stop considering apraxia which is what I figured his diagnosis would be when I took him to the early childhood team. I feel like we had 18 months of lost time until I heard about PROMPT and took him to be evaluated privately. So accept therapies that you feel are working for her, stick up for her if you think something is harmful, and try not to stress too much about the diagnosis. As kids grow these things usually become more clear. Miche From: Grassia miche@... Date: Thu Feb 23, 2006 11:17 am Subject: Re: [ ] Re: Pro-EFA miche37 >Phoebe went from having a hand full of words we could pretty much >make out. She was saying one word at a time. Now she is saying 3 word >sentences. However we really were expecting her to take and if it worked >for her to >just start talking and it to be clear. This happened to my son. His verbal attempts increased, but the more words he suddenly had the more garbled all the motor planning was. In that sense my dad in particular was claiming fish oil regressed him initially. Then he realized, no, he was talking more, but less clear. We made a list of all his words and then in speech and at home we started working on taking the words he had and increasing the function. His vocabulary (expressive) has not increased much over the last 6 months, but his clarity on those ~200 words he has has greatly improved. The only new words we've given him have been have been carrier phrases such as " I want " and " I need " and " Come see. " Things that he can add to to help get his ideas across better. While this happened his receptive (he also has delays, but not as great as expressive) has really improved. Now we're at the point again where we're adding more words since the consistency of his current vocabulary has really improved. He still makes a ton of errors, but now strangers can understand a lot more of what he says, and familiar listeners get maybe 80%! On many words he's gotten them down so the errors are just phonological (r's are w's, final consonant deletion and subbing g for d - " fwock=frog, soga=soda, etc.) He's not switching vowels in famliar words as much anymore either! Hat is now almost always hat and no longer sometimes hot and sometimes het! I just thought I'd share what has helped with us to get him on track after an initial surge in language after starting ProEFA. Unfortunately after that first surge proEFA doesn't seem to have continued the surge. We haven't stopped it, in fact his slp and pediatrician thought it was a great idea! But he's definitely hit a plateau. Miche From: Grassia miche@... Date: Thu Feb 23, 2006 11:26 am Subject: Re: [ ] Pro-EFA miche37 About 3 days. It was clear by 1 week. For us it leveled off unfortunately. Miche At 08:01 PM 2/22/2006, you wrote: >I am a lurker for about 3 months and started my daughter on Pro-EFA a week >ago. I was curious about those of you who DID see results from them, how >long did it take? > > Any input whould be appreciated! > > Thanks, Sara in GA From: Grassia miche@... Date: Mon Mar 6, 2006 9:55 pm Subject: HELP! sadness, weeping and clinging behavior I've been stumped with my son's behavior changes the last two months. Sometimes I think it's related to not being able to express the more complex thoughts he has, but that doesn't seem to answer it all. He's 4.5 and his expressive language is around 17 mo to 2.5 yrs depending on which test, approx 200 single words, still telegraphic speech, but /just/ starting to tie together 3-5 word sentences on odd occasions when he's not thinking about talking. He's still unable to answer questions 90% of the time without a prompt. " Are you hungry? " will almost never get a reply, but " Are you hungry? <pause> yes or no? " will get a yes or no most of the time. He doesn't have sensory issues (aside from some mild oral sensory issues - tends to overstuff his mouth.) He has only very minor finger motor issues, but not severe and he's still at age level in fine motor. He's above age level in gross motor, a true strength for him! He does have receptive language delays as well (not as severe), but with environmental cues he functions very well in day to day life. New situations don't bother him at all, he loves meeting new people. He only has problems in situations where all the information is auditory or where there is a mix, but things are changing too fast. Once in December he cried for a long time and I had to come early to his school to get him. After holding him for about 30 mins on the playground he got back up and played until we had to leave. I stayed (it's a co-op so parents are encouraged all the time anyway!) A week after we discovered a bad sinus infection so I wrote off the crying to that. When school started back up after the break he was happy to go back and was fine the first week, but the next week he started crying at random times of the day. It's a sad weepy kind of cry where he curls in my lap or his teacher's lap and just buries his face in his hands or my chest and whimpers. If you talk to him he cries harder and wails a little. He just wants a safe place to tune out for a while it seems. Now these last two weeks have gotten worse. He's doing this at home regularly and he has refused to participate in dance class for the last three classes. If it were /just/ dance I wouldn't be so worried, but he has loved dance for so long and his mood changes are in other situations too. I have no idea what this could be. He has one new dance class with older kids (ages 4-6, his brother is one of the oldest, he is one of the youngest.) Other than the special dance class nothing has changed at school or dance. My son is a very easy going kid often described as happy go lucky. He has a serious side too, but his serious (relaxed) face quickly turns to a smile when he's smiled at. He's cuddly and funny and a joy to be with...and this part of him is just gone for the last couple months! He's gone through brief periods of frustration (which he reacts to with introversion) in the past, but he's snapped out of them sooner than this. Right before this started he had an explosion of spontaneous speech in therapy and at school (he was doing it at home before then) then he hit a plateau. His SLP suggested it was a period of processing and awareness that was making him sadder. Now he's hit the point where he cries the minute we pull into speech therapy, dance or school. He's also crying a lot more at home. I don't think anything alarming has happened at any place. School I trust and I'm with him 25% of the time. The kids there are very kind, so much so that all activity stops when he cries because they KNOW he's not a regular crier. In speech I'm watching the whole time through a one way mirror (he knows I'm on the other side.) At dance I'm either in the room or watching through a window. I haven't seen anything that warrants this change. He has had two sinus infections since December, but he isn't complaining of pain right now. The last was two weeks ago and day two of antibiotics gave him instant relief and stopped the complaints of pain. He's getting enough sleep and eating normally. I am pregnant, but he doesn't seem to be upset in any way about the new baby. I don't think he understands it all yet except that there is a baby in mommy's tummy and he got to see ultrasounds and hear the heart beat. He was worried about me when the doctor put the doppler on my belly last week. He kept saying, " No! Hurt! " But I reassured him it didn't hurt. After about 5 mins we finally got the heartbeat (baby was wiggling too much) and he understood what that was and smiled big. He's been coming up to me since and pointing at my belly saying, " Baby! " with a big smile. He loves babies when we see them and seems excited. He's started playing with my old baby dolls at my parents again too. The only thought I just had when reading other threads is we restarted ProEFA at the beginning of Jan. The first time in Aug he had a great increase in verbal attempts then it stopped. We stopped in early Dec when he got a stomach bug and just forgot to restart, but finally did in Jan. He eagerly takes the fish oil with me just squeezing the capsule right into his mouth. Last night asked for a second (I was considering doubling the dose as it's been six month so I went ahead and gave him one, but will start 2x a day with one from here out.) Could ProEFA cause this kind of sadness mood change? Sorry this is so long. The more upset I am the longer winded I get. For anyone who made it through I'd love any suggestions. Miche ~~~~~~~~~~~~~end of archives ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Just FYI - my son does eat very well, but we eat absolutely no fish in my house. None. I don't eat it, I don't cook it, and I don't serve it to my kids. And though I consider myself a " cook " (a distriction Ray has made well many times) I'll take the compliment. I believe it was a metabolization issue - not that he " no longer needed it " - and I also think that it changes REM sleep, creating extra cranky kids. I also want to say that I think frustration in moderation is a GREAT motivator for kids. It is NOT what my son experienced, though. M > > I posted a few of your archives from the first you ever > posted here, to most recent to see if any answers lie in them. In > quickly looking over them it appears your child had a surge in 3 > days of taking one capsule of ProEFA at around 4 years old. When he > hit the plateau you were not sure if you should increase to two > capsules as you were waiting for the 6 month point. Doesn't appear > that you ever did increase -did you? > > One capsule of ProEFA is about equivalent to the dosage the FDA > approved for infant formula, so extremely conservative dosage wise > for a 4 year old. We've noticed in this group that most older > children around 5 and up do need at least two a day to acquire the > more dramatic surges seen in the 2 and 3 year olds starting at the > one a day. Also even though it took my son Tanner 6 months for his > first plateau, the typical time is around 3 to 6 months. We can > follow what has worked for years in this group, but as time goes on > we learn more and more, which is a good thing. > > More recently in this group there has been another exciting change > in dosing which appears to be a much better way to go for at least > those who have tried it so far. 's child at 2 and a few > others are multi dosing a few capsules worth 3X a day with reported > even more dramatic -even more accelerated progress. What is > using however is more typical of the amount of EFAs used in research > by both Dr. Stordy and Dr. . In this group we've always > kept the dosage low and gradually over a year's time increased to > about 3 capsules a day because anecdotally that worked -but that > doesn't mean that low dosage is always the best for all. Especially > for those that are older and/or hit a plateau it appears that higher > dosages even raised gradually, may be beneficial. I'm curious now > for those children that didn't respond (or as in your child's case > stopped responding) what gradual higher increases would do. It's > easy enough to find out as long as a child isn't allergic to fish > oils of course. In most cases as Marina just reported within a day > to 3 weeks you'll notice the changes. > > I'd run the following by the professionals that work with your > doctors. (coincidentally just when you started PROMPT was about a > month after you started seeing the accelerated surges from the > ProEFA -run by Deborah Hayden too if you are still working with > her) I know that you have the approval from them already for the > fish oils, but perhaps discuss the latest behaviors with them if > they don't know about them already. > > In March of 2006 you wrote, " I've been stumped with my son's > behavior changes the last two > months. Sometimes I think it's related to not being able to express > the > more complex thoughts he has, but that doesn't seem to answer it > all. He's > 4.5 and his expressive language is around 17 mo to 2.5 yrs depending > on > which test, approx 200 single words, still telegraphic speech, > but /just/ > starting to tie together 3-5 word sentences on odd occasions when > he's not > thinking about talking. " > > If Tanner is off his oils he regresses as I've posted, and only once > as reported did we leave him off for a week which was a nightmare > and that's when he exhibited the behaviors you see in your son on > the one capsule of ProEFA. (this was due to his IEP testing as > reported in the book The LCP Solution " It was the saddest thing. We > will never do that to him again. The poor little thing was no longer > able to say as much, and he just didn't seem to learn. He wasn't > able to 'parrot' us like he had when taking the supplements. And for > the first time he was frustrated to the point of tears. " > http://www.drstordy.com/stories.html ) > Even if that's not the reason for your son, there is no doubt in my > mind that is what caused the behavior in my son Tanner. He was > aware of what he was not able to do anymore. In the archives I > describe it like he had it -and suddenly it was gone. > > I know most may view your message as a negative -but given your > child's history (which is why I posted the archives) I actually > think frustration is a good thing -especially since your child's > receptive ability had been in question by various professionals. > Perhaps ...the one > capsule (?) of the fish oils are causing the crying and clinging > behaviors because the amount is just enough to make him aware of > what he isn't able to do, as you wonder, but not enough to help him > do anything about it. > > The fish oils initially created surges in your child but again once you > hit the plateau you wanted to wait 6 months to go to 2 a day. Since > your child is older and the range is typically 3-6 months for the > first platue -to me it's clear that stopping them, or starting them > again at one a day may not be the answer. > > I am suggesting trying a slightly higher dosage to start (for > example two vs. one) rather then stopping them or going back to one > a day for a 4 1/2 year old. I wouldn't suggest this if they never > worked, but because they did " work " for your child initially and > because it appears he still has a ways to go. If you raise the > dosage a bit to try that, you can go slow and go from there. You'll > know within a few weeks if it's a good thing or not. > > Marina had posted that even though the ProEFA created surges in her > son's speech to start, that once her son's speech was fine that the > ProEFA caused behavioral issues and taking him off and putting him > back on made no difference in his speech. She was the first to > state this, and I had wondered here if it was because he no longer > needed the oils for some reason? Marina's a chef and perhaps he > gets all he needs from a healthy diet -something most of us don't > get into our kids. In your child's case it sounds like he still > needs a great deal of help with his speech, so doesn't sound the > same in that matter. > > Best to you and let us know how it goes. Below are again some of > your archives to see if any answers lie in them: > > From: Grassia <miche@...> > Date: Sat Jul 16, 2005 2:47 am > Subject: New Member Intro - what do you do when a diagnosis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 All, I have a 2 years old son. Suspect having apraxia. He use know how to speak 'ba ba'(father)when he is 18th mhts but lately he hardly speak. he understand what we say and can communicate with us. I read some of your mails that EPA or Omega will improve his speech ability. kindly advise Thanks KC --- kiddietalk <kiddietalk@...> wrote: Quote Link to comment Share on other sites More sharing options...
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