New to gf/cf diet and have a question about starting.
I have a 26 month oldson who has a severe speech delay. After about three months ofspeech therapy he can now say about 10 words, but not very clearly.He also knows about 10 signs now. We were referred to adevelopmental pediatrician who evaluated him and said he does nothave enough characteristics of autism, but gave him a PDD diagnosisin order to get more services. He had another evaluation through thestate by a different developmental pediatrician along with a childpsychologist but they did not give him the PDD diagnosis, so he isonly going to get speech therapy and preschool twice a week for hisspeech delay. I asked about ABA, but since they did not give him thediagnosis, they won’t pay for that therapy. He is my first and onlychild so I am totally confused by all this. I don’t always know whattypical kids do at this age (I just know he should be talking), sooften times I think there is nothing wrong with him and other timesI worry like crazy. Well, I mostly worry… Anyway, I am doingeverything that I can to help him. I am paying for an additional 2hours of therapy a week and his regular pediatrician is trying toget me more services through my insurance, but I don’t know how muchthey will approve yet. When he goes to bed my husband and I stay upreading and researching Autism and his speech delay. I have startedhim on DMG and Super Nu Thera and made an appointment for him to seea DAN doctor, but his appointment isn’t until March because they areso booked up. I don’t want to waste any time since everything I readsays it is so crucial to do things early. I would like to start theGF/CF diet however we are going out of town for three weeks duringthe holidays, so I think it would be hard to start now. What I wouldlike to do is start to replace his snacks with GFCF alternativesthat way at least I am starting to do something until we get back. Ihave also read that it is good to do this gradually. Can anyoneoffer suggestions on good snacks I could take along or other ways tostart introducing new foods while we are away? Any help would begreatly appreciated. From what I have read I really hope this dietcan make a difference and help my son find his voice. Sorry for thelong message.
This post tagged as: speech therapy, snacks, gfcf diet
Eleni Farha said,
Wrote on March 10, 2007 @ 12:59 am
Perhaps you saw my previous post about considering the diet? My son has oraland verbal apraxia — it is both over and under diagnosed. It is an oral motorplanning problem (neurologically based, but pretty fixable with lots of work.) To learn more, check out the yahoo listservs for childrens-apraxianet (linked tothe cherab website) and apraxia-beyond for biomedical information. Also, theLate Talker book by Marilyn Agin and Lisa Geng (cherab and related listserv areboth hers). If if your son doesn’t have apraxia, you will find lots of helpfulinformation. Plus, it’s always good to eliminate something, right?
If you haven’t already, start your son on Nordic Naturals ProEFA or similarfish oil (contains Omega 3, 6, and 9). It had a dramatic, positive affect onour son’s speech.
If you have questions about any of this speech stuff, feel free to email meoff line (although I’m only about a day ahead of you in research this all
)
Santina Winkelbauer said,
Wrote on March 10, 2007 @ 1:48 pm
No need to apologize for the long post, especially when first joining thegroup. It sounds like the diet may well help your son, at least judging from ourexperience with our daughter. I think you are wise not to try to start it whentraveling over the holidays, as that would make the transition difficult.
As far as resources, go to http://www.tacanow.com and click on GFCF diet. The wholesite is loaded, especially this page, and what you’re looking for is the “10weeks to the gfcf diet” plan, which eases both the child and the caregiver(cook, shopper, etc.) into the diet to reduce withdrawal for the child andstress for the caregiver.
Before you start the diet, you might want to call the DAN! doctor and find outif they want to do a urinary peptides test. This test would not be valid inMarch if you’ve taken him off gluten and casein starting in January. They canprobably get you the kit and have you send it in now, even if you don’t get theresults till you’re in the office. (Then again, they might be willing to giveyou the results over the phone or mail them to you in the meantime.) Especiallyif he has high numbers, this is both further encouragement for you and anexplanation to give family members or others who question why you’re “depriving”your child of so many foods. High numbers on this test indicate what you’re”depriving” him of by having him on the diet is morphine-like compounds thathave him “drugged.” Whether or not the DAN Doc wants to do a peptides test now,talk to your regular pediatrician about getting a celiac (another form of glutenintolerance) panel. Explain to him that you are going to be starting your son on a gluten-free diet and that, like the other test Imentioned, the results wouldn’t be valid later if he isn’t ingesting gluten.Being that this is a lifelong condition (celiac) and requires 100% gluten-freediet to prevent complications, it would be good to know before starting the dietwhether or not he has this condition. If your doctor says your son doesn’t havethe classic symptoms, tell him you want the test anyhow, as many people withoutother issues (speech delay, etc.) have it and don’t know because it doesn’talways manifest in the “classic” symptoms. Incidentally, as celiac disease isrecognized as an issue by many doctors who are unfamiliar with other forms ofgluten intolerance, if he does have this you will have more support from manydoctors for at least the gluten-free part of the diet than if he doesn’t. Beready for your doctor to tell you that your son doesn’t need the diet if theresults come back negative, but tell him you want to give it a 3-6 month trial, as there are many other ways gluten can cause problems insomeone’s system if they’re intolerant of it. (Celiac disease would also be arecognized diagnosis for the school providing gluten-free foods for him, much asyou can also get the gfcf diet written into his IFSP/IEP without this with asigned note from your DAN! doctor.)