Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 We are going on day 18 tommorow. KiKi (22 months old) is doing better with the help of enzymes....still problems with pudding consistancy poop. Moving slow this time through stages....she is acting so much better. Laughing for the first time....so much happier. Still had one " night terror " like seizure last night. The doctor told be to wake her up a half hour before I think it will happen since she does it around 2:00 at night...to see if we can break the cycle...that leads to it. Has anybody had success doing this? We hope to hear more words from her...(today she would not say " eye " if we made her!....she is very determined for it to be only in her time...and not ours) I hope that we do hear her say " no " soon. One of you said that this would be a sign of true " healing " ....she still just screams a lot to be understood when she protests....so much behavior that needs to be changed...Our son was less moody today...less crying....and irritable.... Both kids need speach therapy/possible occupational therapy...yet how do you guys get a child to participate (KiKi)in therapy when they just close up/and LITERALY shut down with strangers??????She crawls into herself...and WILL NOT LEAVE MY LAP...and if you make her...she falls to the floor and literaly " wills " herself to sleep after screaming in terror! When she was evaluated last time...it did not work at all...I brought home a baby/toddler that was literraly a RECK...it took her THREE DAYS to recover! Even when people come into the house she " shuts down " ...we use to have hopeful thinking and thought that she was " just " shy...but this is more than " just " shy......And of course....they/past doctors/therapists blamed her parents...thinking that there may be abuse/neglect.....or something going on wrong in the home! Questioning our stress level and our family dynamics...even blaming the adoption of her sister who is five months younger.....Everybody wants someone to blame when a child has this ASD problem....why can't they see the TRUTH? It seems like most the therapists don't even get it....meaning the " gut brain connection! " It took an act of congress to get someone to notice that it was Celiac Disease! And even at that they don't get the gut brain connection...thinking that it was " just " Gluten...when we all know this is hagwash after we all stayed sick eating the traditional gluten free diet...prescribed to all of us since we where confirmed as having Celiac Disease! At around ten months old when we put " gluten free " rice in her diet she ended up so sick she ended upin the hospital with a bunch of " clueless doctors " !!!!!!! This was a wake up call for her mother...tell me! It was just horrible not knowing how to feed her or myself..or my Celiac Family.....since I was breast feeding her I had to stay away from the foods that made her sick....everyone suggested to " wean " her (that my milk was not good enough to help her gain weight)...thank the lord I DID NOT LISTEN...my milk was her LIFE SAVER (she literaly clung to the breast...nursing around the clock like a newborn it was a JOB, yet on the most part was the only time she did not cry!) and La Leche League and well informed Lactation Consultants saved HER and her mother from this horrible advice! IT just so happens that cornsyrup (which is in most formulas) put her in the emergency room (when we gave it to her the first time)...she also got sick with soy and dairy! Literaly coming out of a nightmare. She use to cry around the clock! I was a walking zombie! I was exhausted....and sick myself! We see the DAN April 26....it seems like a year from now..I hope that he is understanding...It is nice to already have two doctors that are SCD friendly (but they are not DAN doctors)....look forward to meeting Dr. Kucera (a DAN doctor that promotes SCDIET. Could Helen Danahey M.D. and Scot Lewey D.O. be put on the list of SCD freindly doctors? For the Colorado Springs/Colorado Area? This way others can use them if they want a doctor that accepts this diet plan, thanks to them seeing our family...and all the problems we have had with the traditional gluten free diet/casien free diet/paleo diet...not working all that well. Again...thank you Elaine! Again sorry so long...lots to share..... Antoinette Quote Link to comment Share on other sites More sharing options...
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