Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 This is so great! It sounds like you did the right thing with sticking it out with the enzymes. Keep posting with whatever happens. > Tyler (7 yr old, HFA) has been on the enzymes for 12 days now. No > real stand up and take notice changes, but he was extremely pale and > had dark circles under his eyes, one day. To the point my > mother-in-law called me at work (she's our sitter) and my husband > brought Tyler to my office on their way home so I could see for > myself. Tyler being pale is a sign of illness (others are lack of > appetite, sleeping during the day, and cranky). He had no other signs > of illness so I called Devin. We decided it could be a banana from a > couple of days ago. > > The next day there was color back in his face and no dark circles > under his eyes. > > After supper last night he trotted off to go play on the computer, and > returned a few minutes later to announce to his Dad, " I believe I'll > have my brown chips now (Bar-B-Que Pringles). " He's been saying more > and more things over the last year or so and sentences are getting > longer by the day, but this was just precious. > > Just thought I'd share. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Just thought I would give you all an update on my son's situation. Everyone has been so helpful in replying to me, and I truly appreciate it. He's back in school today, still some tingling in his fingertips, but the eye problems have resolved, and I think that was his major complaint. I've never had optic neuritis, but it must be really miserable! The 4.5 should be here today, so wish us luck with switching from the 3 mg. Meanwhile, we will never let him run out again - 3 days made a huge difference. Interestingly enough, Skip said that missing a couple of days would not cause an exacerbation. He thought that another stressor (think term paper due this week) might have had an attack " pending " and then without the LDN it just slipped in. I understand what he is saying. It's a sad world when a 16 year old has stress in his life, though. I don't think I did at that age, or maybe I'm just too old to remember! Hope you all have a wonderful weekend! Again, thanks for your help and support. Take care! Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2005 Report Share Posted February 3, 2005 Annie, I really like your ped. I'm so glad he was able to put your mind somewhat at ease. I'm also glad he recognized you would not be happy (I "hear" it in your post) without some professional evaluation for . I can't imagine how frustrated you are knowing they could have been in therapy for many months now. However, the SER group sounds wonderful to try and get you in qucikly. Please keep us posted. They are such adorable little guys. They are so active now I can't imagine if they were not delayed how frazzled you would be Get your running shoes out. mom to na DOC Grad 2/04 www.thefilyaws.com "Ana B. Castro" <anniecastro1971@...> wrote: AS some of you may know the last two weeks have been a "little" nerve-wrecking since we had the EI evaluation... especially 's evaluation. Since that day, Jan 20, I haven't been sitting on my butt... but I haven't been doing as much research as you might think... it is just that all the information about autism and/or autism spectrum is so confusing... Trust me on this... Plagio and Tort are a breeze compare to the autism info... at least it was very clear to me... Maybe its just that Im so tense and uptight that my brain is not working properly... Who knows... I've always said half of my brain died with the c-section... lolWell, for the good news... I talked to our ped and looked at me as dumbstruck as I must have looked the EI evaluator when she mentioned the possibility of being autistic. The first thing he told me was that she was no doctor to do such a dx and that in a one hour evaluation it was impossible to get all that information. Second, he told me that it is very hard, if not almost impossible, to dx a 19 months old baby with autism... unless we are talking about a very severe case which he doubts has. Third, he told me that, in his opinion, and Ignacio are just delayed... he has never thought for one minute that we might have an autistic baby and he told me that, if that was the case ( being autistic), it would be a very mild case. On the other hand, he told me that I should try to get them evaluated just to be sure... with an expert in the field (most probably a neurodevelopmental pediatrician). Also he gave me the referrals for the eyes and ears evaluations.Today we went to the oftalmologist and both of the twins are OK in that department... everything looked normal and the doctor told me that he would like to evaluate them again in two years. We have the ear evaluation on the 10th.Also, we are getting the twins evaluated with a orthopedist since, especially Ignacio, are putting one of his feet to the inside while he's walking. In Ignacio's case is so severe that he stumbles a lot and his right leg looks a little bent.We are having problems getting them evaluated by the neurodev ped. The one our ped recommended only evaluated kids 5 years or older. So Im still looking for that appointment.I havent heard anything from the EI after the twins evaluation so they haven't received therapy yet. We also called an association (SER of PR - which means Education and Rehabilitation Society of PR) to get some info in autism... and guess what??? Because the twins were premmies they would have qualified for therapy with them since they were out of NICU... so that means they would have been receiving therapy for the last 19 months or so. Right now they have a waiting list of 2 months but the employee that gave me the info talked to her supervisor and they are trying to get them into therapy without putting them in the waiting list. So we are waiting for that... I just want to start the therapies as soon as possible.Regarding Ignacio's tilt... we definetely have a little tilt but it just shows when he is running and he seem to have complete ROM. I still have to get his head photograph but definetely he still has a plagio shape... but I can live with it. He looks so different as compared to when we started the treatment and his facial assymetry is gone (or at least we don't notice any). He still keeps being the more outward of the twins... and he definetely likes girls... no preferences in that department as long as they are girls... lol. is still a little introverted but he's very loving... especially with his daddy who is the only one that he kisses... (That really pisses me off!!!)Well I hope everyone is ok... and that we are getting rounder by the day ;-).AnnieMom to twins, Ignacio (DOC Grad 5/2004) & San , PRFor more plagio info Quote Link to comment Share on other sites More sharing options...
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