Guest guest Posted November 19, 2003 Report Share Posted November 19, 2003 Thanks so much for posting that. An SLP I work with has a 9th grade student who sounds so much like him that I will send her his link! W > Hello everyone, > > 's voice has been added to The Talk Page! He's 23-years-old and you > can listen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 Jaci, I am very happy for you and your family. You are a wonderful mom, too. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 That's Exciting. Congratulations. I'd recommend Culturelle from Kirkman Labs. We've seen great things with it, and from personal experience, the GSE does make the bacteria issue that much worse. I wish you more good luck and experiences. I remember the first Neurotypical temper tantrum, screaming, crying and hitting. I was so excited, he wasn't biting himself, his tears had noise ( use to be this silent tears thing that broke my heart) and he was verbalizing what he was so upset about. Yup, your life will get harder, but also so much easier. Update Just an update on our progress so far. We started enzymes in October - about four weeks ago. We had already been on OLE for about two weeks before that. About a week ago my son said a four word sentence - " I did a wee. " Hey - talking and the beginning of toilet training at once! He started becoming more co-operative (or do I mean " less oppositional " ?) Today he stacked the plates and cutlery at the table after our breakfast and handed them to me to carry to the kitchen! Now, this may sound petty but later today this same child did what he used to always do after a meal - turn his plate/bowl upside down and empty remnants on table/floor/chair... So, I'm thinking there are major improvements going on and it's early days so the opposite behaviours in one day are not disheartening. He is showing signs of yeast again - and bacteria. So it's back to the OLE, GSE, OoO, cycle. However, his BMs have been sooo good compared to two months ago! Not excellent, but very very good. Minus the incredible stench, formed instead of very loose, colour dark with some variation but no longer a mustard or curry colour. No grit, no fluff.... except for the past couple of days. Other things he's doing now include playing without me at his side (and going outside to play without waiting for me to be there immediately); he's adding noises to the movements of toy trucks; his problem solving is even better than it used to be (a mixed blessing - he now knows how to get up on the kitchen workbenches, unplug the computer, get into all sorts of places he never did before....). And, to top it all off, he signed " love good you " to me (*happy tears*). And he's speaking more words (difficult to understand still but obvious words). " Teddy " , the dog's name, " come " , " go " , " gone " (as in " all gone " , complete with hand gestures - LOL he's so cute). Such significant improvements! And this for only one month on enzymes. Is this possible? Thank you all at this board for your generosity, knowledge and willingness to go an extra kilometre to help out. , a special thanks to you for your book. It is easy to read, easy to understand and makes many complex issues clear. It is also nice to read such a personal tone and style! When I can't get to this board for answers or clarification of things, the book acts as a surrogate and portable list! Jaci, Australia Note: My son's three years and two months. He's been on all three Houston enzymes (AFP, NF, ZP) during the past month with 1/2-1 cap per meal/snack. I supplement with calcium, he gets Epsom Salts baths about every three days (or when he really needs the magnesium LOL), gets Perfect Stool Formula in his night bottle (so it depends on him drinking the bottle), zinc 1/2 cap every other day (mostly for mouthing), an Australian Bach Flowers remedy mix, now the yeast and bacteria treatment cycle listed above. I think that's all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 In a message dated 11/20/03 9:47:29 AM, jaci.warren@... writes: << And, to top it all off, he signed " love good you " to me (*happy tears*). And he's speaking more words (difficult to understand still but obvious words) >> Hurray, Jaci! Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2003 Report Share Posted November 20, 2003 How wonderful, Jaci! Congratulations to your family!!! Language! Toileting! Helping around the house! Play! Yes, it is so possible. Incredible, but possible. Wa-hooooo ++++ Thank you sooooo very much for posting this update! . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 In a message dated 2/4/04 9:18:51 AM, Lottner@... writes: > Separate question: Tried SCD. Distended belly gone. IgG test revealed > allergy to nuts. Went back to rice bread. Distended belly back. Which is > worse, giving him rice which causes distention (yeast?) or giving nut bread to > which he shows IgG antibodies? Not much else he'll eat due to sensory issues. > It could be that some nuts are worse than others for him. I never did any IgG tests so am completely in the dark as to whether you can get separate nuts tested. You may find your son has a rice problem and that using millet, for example, would be fine for him. I like the SCD and my son was on it for 6 months before I introduced some non-SCD foods. Whenever chelating, I go back to SCD for a few days. It's a tool like anything else. Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 > Separate question: Tried SCD. Distended belly gone. IgG test revealed allergy to nuts. Went back to rice bread. Distended belly back. Which is worse, giving him rice which causes distention (yeast?) or giving nut bread to which he shows IgG antibodies? Not much else he'll eat due to sensory issues. , We've seen many improvements on SCD diet. Have you considered doing it (as is I believe recommended to start with anyway) without any nuts? We basically give our kid meat, eggs, fruit and vegetables (SCD legal ones). We don't do the nuts or nut flours yet because he doesn't digest him. He's doing great on this diet, absolutely perfect poops, so maybe you don't need to choose between rice and nuts. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 Everything has to be interpreted thoughtfully in light of the real human being you are talking about, not solely numbers on a piece of paper from the lab. Especially since IgG allergies are only significant if the relevant proteins make it into the bloodstream there is no real reason to avoid an IgG blood test allergen if the kid clearly is tolerating it and there is no evidence of leaky gut problems. Also digestive enzymes that help break up the proteins help make IgG reactions less. In almost any case where there is a very clear improvement on donig thing X and not on Y, but the lab results say do Y, I think you'd be wise to do X instead. You want the human being better, you could care less how healthy the lab report looks. Lab reports are only useful in terms of how much help they provide in getting someone better. Andy . . . . . . . . . . . > > > Separate question: Tried SCD. Distended belly gone. IgG test reveale= d > > allergy to nuts. Went back to rice bread. Distended belly back. Whic= h is > > worse, giving him rice which causes distention (yeast?) or giving nut b= read to > > which he shows IgG antibodies? Not much else he'll eat due to sensory = issues. > > > > It could be that some nuts are worse than others for him. I never did a= ny > IgG tests so am completely in the dark as to whether you can get separate= nuts > tested. You may find your son has a rice problem and that using millet,= for > example, would be fine for him. > > I like the SCD and my son was on it for 6 months before I introduced some= > non-SCD foods. Whenever chelating, I go back to SCD for a few days. I= t's a > tool like anything else. > > Marti > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 , Lifestream makes some awesome gf, cf, sf, yeast-free buckwheat blueberry waffles. I have no connection with Lifestream other than as a satified customer. Have you tried those for him or corn (if he doesn't have a problem with it) tortillas (read the label to make sure they don't have wheat flour (some do). S <tt> Hi Everyone.<BR>   Which is worse, giving him rice which causes distention (yeast?) or giving nut bread to which he shows IgG antibodies? <BR> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 is allergic to eggs and dairy (IgE). Because of his sensory issues (?) he only licks fruits and veggies. He does not bite or swallow them. He eats only chicken that is minced into little pieces. Without the bread made of either rice or almond, to which I have added grated veggies and pureed fruits, he would have only chicken to eat. Although I don't think a high protein diet is bad, I think an " only chicken " diet is bad. 's one other healthy food that he will eat is the carrot curls baked in the oven. Unfortunately, they can't be orange and still moist, but rather brown and crispy. If they are a minute over, they are black and inedible. If they are not consumed right away, they are moist within twenty minutes and he won't eat them. would be happy to eat corn flakes, tortilla chips and corn puffs. But they are not healthy and not SCD legal either. I feel that I really need to be able to make a bread, but I'm not sure which. The current bread (SCD legal) is almond flour, grated carrots, pureed apples/pears, baking soda, coconut oil, salt. His last bread (GF/CF) was rice flour, xanthan gum, egg replacer, baking powder, grated broccoli or carrots, canola oil. Even while eating the SCD legal bread, 's poops remained pale in color (yellow in general or orange after eating the carrot bread). The closest that I got to brown was after giving him beet juice to drink. It is possible that since is allergic to almonds and the bread was almond based, that his bowels were still in distress. But his belly was definitely significantly less distended. [ ] Re: Update > Separate question: Tried SCD. Distended belly gone. IgG test revealed allergy to nuts. Went back to rice bread. Distended belly back. Which is worse, giving him rice which causes distention (yeast?) or giving nut bread to which he shows IgG antibodies? Not much else he'll eat due to sensory issues. , We've seen many improvements on SCD diet. Have you considered doing it (as is I believe recommended to start with anyway) without any nuts? We basically give our kid meat, eggs, fruit and vegetables (SCD legal ones). We don't do the nuts or nut flours yet because he doesn't digest him. He's doing great on this diet, absolutely perfect poops, so maybe you don't need to choose between rice and nuts. Good luck! ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 The answer to the following is somewhat situational. Recall that test resultss are pieces of paper with numbers on them that come from laboratories. They are not real live flesh and blood human beings, and not always an accurate reflection of them. Even when accurate, it is very important to have a clear, sharp picutre of exactly what they mean. IgE allergies are usually pretty apparent by observing the kid - prompt icky stuff happening due to gut inflammation and systemic response like red eyes, wheezing, flushing, spacing out, etc. If none of that is seen one has to wonder if the IgE test reagent cross reacted with IgE that really isn't to that substance. IgE is the " sniffle, zneeze, eyes red, get hives " immunoglobulin. Allergy globulin. Pale stools are lack of bile flow, not related to immune globulins or allergies. Taurine, glycine, milk thistle extract, phosphatidylchline to make more bile (curcumin as in turmeric also helps but elevates cysteine) and magnesium to relax the bile duct so it flows out. If nothing works then the doctor needs to consider some imaging study like an abdominal ultrasound to see why not. Is his almond allergy IgE or IgG? IgE should be obvious from his reaction and if it isn't then you really have to question the test. IgG is not obvious, but IgG is only for things that make it intact into the blood stream so fixing his gut up enough it isn't leaky, and/or using digestive enzymes addresses it. Andy . . . . . . > is allergic to eggs and dairy (IgE). Because of his sensory issues (?) he only licks fruits and veggies. What does he do is you present him with a stick or spoon dipped in puree? E. g. applesauce? Or an applesauce popsicle? Any creative solutions here? How about juicing them? >He does not bite or swallow them. He eats only chicken that is minced into little pieces. Without the bread made of either rice or almond, to which I have added grated veggies and pureed fruits, he would have only chicken to eat. Although I don't think a high protein diet is bad, I think an " only chicken " diet is bad. 's one other healthy food that he will eat is the carrot curls baked in the oven. Unfortunately, they can't be orange and still moist, but rather brown and crispy. If they are a minute over, they are black and inedible. If they are not consumed right away, they are moist within twenty minutes and he won't eat them. would be happy to eat corn flakes, tortilla chips and corn puffs. But they are not healthy and not SCD legal either. I feel that I really need to be able to make a bread, but I'm not sure which. The current bread (SCD legal) is almond flour, grated carrots, pureed apples/pears, baking soda, coconut oil, salt. His last bread (GF/CF) was rice flour, xanthan gum, egg replacer, baking powder, grated broccoli or carrots, canola oil. > > Even while eating the SCD legal bread, 's poops remained pale in color (yellow in general or orange after eating the carrot bread). The closest that I got to brown was after giving him beet juice to drink. It is possible that since is allergic to almonds and the bread was almond based, that his bowels were still in distress. But his belly was definitely significantly less distended. Sounds like a lot of progress to me. > [ ] Re: Update > > > > Separate question: Tried SCD. Distended belly gone. IgG test > revealed allergy to nuts. See discussion of IgG above. Get rid of leaky gut, use digestive enzyme, the IgG to the nuts never meets the protein from the nuts and there is no issue. > Went back to rice bread. Distended belly > back. Which is worse, giving him rice which causes distention > (yeast?) or giving nut bread to which he shows IgG antibodies? It is always best to do the thing that makes the real flesh and blood human being in front of you better. > Not much else he'll eat due to sensory issues. > > , > We've seen many improvements on SCD diet. Have you considered doing > it (as is I believe recommended to start with anyway) without any > nuts? We basically give our kid meat, eggs, fruit and vegetables (SCD > legal ones). We don't do the nuts or nut flours yet because he > doesn't digest him. He's doing great on this diet, absolutely perfect > poops, so maybe you don't need to choose between rice and nuts. Good > luck! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Ever tried puree-ing fruit and making your own popsicles? Would he lick those or avoid the cold? S Because of his sensory issues (?) he only licks fruits and veggies.  =======================================================<BR>  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 > Ever tried puree-ing fruit and making your own popsicles? Would he lick those or avoid the cold? > S > Tried it all summer long and gave up when it got cold out. Time to try again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Hooo-hooo-hooo!!! Gotta love that magnesium! Congratulations on such an easy solution!!! . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 This is awesome Anne congratulations. If Sam ever says more juice please I think I will faint!!! LOL Mandi in UK Just a quick post to let you know how my twins are doing on the enzymes. I've been giving them at least some HN Zyme Prime and occasionally peptizyde since December 2nd, 2004. Since then, I have been able to give the girls a bath without me having to change my clothes as they are splashing less and playing more " typically " in the tub. Grace said her first three word utterance this morning with " more juice, please " . Sophie has been following some directions and a couple of days ago actually got herself a diaper out of the cabinet when I said " let's change your poopy diaper " . Yes, I would say I've been seeing improvements. They are still whiney at times and had a big crying fit today - I'm running out of HN zyme prime so have been giving less to them. Hope to get more in two to three days. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 > I wanted to ask a question, too. I've been taking the enzymes also > and have been having wicked headaches in the evenings - pretty close > to migraines. Any reason for this? Yeast issue, phenol issue, > stress issue? If you don't tolerate papain/bromelain, and if this is the original version, then you might not tolerate the Zyme Prime. It might be that you don't tolerate OTHER foods that the Zyme Prime is not addressing, and addressing most foods is causing your intolerance of the OTHER foods to manifest itself. Do you eat processed meats, like hot dogs or sandwich meats, that contain nitrates? Nitrates will give me a wicked three-day migraine. Other people report the same problem with MSG or artificials. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Thanks for the update. I am glad to hear things are in motion for you. Please let us know when the casting is setup. Angie and Jenna(STAR grad) Update > Just wanted to update again. We just got our medicall assistance > card yesterday, so anything that our BCBS doesn't cover, the MA > should. So, I sent the signed forms back to Hershey, Pa today so > they can start getting the approval from MA, they already got it > from BCBS. So, once that goes through we will make our appt for > casting! It is the starband that they use, just in case I have not > mentioned that before. So far, they all seem very familiar with > it. I am excited, scared, and nervous...all sorts of emotions! I > am a little worried being that she will have it on during the > hottest months of the year! She already overheats easily. I'll be > putting her in just a diaper all summer and I'll have the fan on > her. We don't have AC, so that's not good. But, if she does start > to get overheated, my parents only live a couple of miles away, and > they have central air...so I can take the kids over there for a > little bit, if I need to. I bought her some really cute tank top > onesis so wear when we go somewhere. > > My oldest is now 4 years old! Her birthday was Monday. She got > lots of new toys. Our 2 1/2 yr old is now excited for her birthday > in September. She wants cake and presents, just like her sister. > Oh, I also got Hannah a couple t-shirts from walmart that say, " Am I > cute or what? " , " If you think I's cute, you should see my grandma " , > and " I am the little sister " . They are so cute! LOL > > Ok, I think I am done talking for now, lol. I don't right on here > much, but I do read the emails everyday. Good luck to everyone! > > Jill > (4) > Milena (2 1/2, unresolved plagio) > Hannah (7 months, severe plagio, soon to be banded) > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi Jill, Hope everything continues to go smoothly. Getting those onesies will be a good idea for the hot summertime. Keep us posted! Natasha > Just wanted to update again. We just got our medicall assistance > card yesterday, so anything that our BCBS doesn't cover, the MA > should. So, I sent the signed forms back to Hershey, Pa today so > they can start getting the approval from MA, they already got it > from BCBS. So, once that goes through we will make our appt for > casting! It is the starband that they use, just in case I have not > mentioned that before. So far, they all seem very familiar with > it. I am excited, scared, and nervous...all sorts of emotions! I > am a little worried being that she will have it on during the > hottest months of the year! She already overheats easily. I'll be > putting her in just a diaper all summer and I'll have the fan on > her. We don't have AC, so that's not good. But, if she does start > to get overheated, my parents only live a couple of miles away, and > they have central air...so I can take the kids over there for a > little bit, if I need to. I bought her some really cute tank top > onesis so wear when we go somewhere. > > My oldest is now 4 years old! Her birthday was Monday. She got > lots of new toys. Our 2 1/2 yr old is now excited for her birthday > in September. She wants cake and presents, just like her sister. > Oh, I also got Hannah a couple t-shirts from walmart that say, " Am I > cute or what? " , " If you think I's cute, you should see my grandma " , > and " I am the little sister " . They are so cute! LOL > > Ok, I think I am done talking for now, lol. I don't right on here > much, but I do read the emails everyday. Good luck to everyone! > > Jill > (4) > Milena (2 1/2, unresolved plagio) > Hannah (7 months, severe plagio, soon to be banded) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi Jill, Thanks for the update. I'm glad things are moving along for you! My Hannah was actually banded for two summers and it is defnitely manageable. You may want to consider buying a window a/c unit for her bedroom though b/c sleeping will probalby be tough w/out one. Keepus posted! , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.tyepad.com > Just wanted to update again. We just got our medicall assistance > card yesterday, so anything that our BCBS doesn't cover, the MA > should. So, I sent the signed forms back to Hershey, Pa today so > they can start getting the approval from MA, they already got it > from BCBS. So, once that goes through we will make our appt for > casting! It is the starband that they use, just in case I have not > mentioned that before. So far, they all seem very familiar with > it. I am excited, scared, and nervous...all sorts of emotions! I > am a little worried being that she will have it on during the > hottest months of the year! She already overheats easily. I'll be > putting her in just a diaper all summer and I'll have the fan on > her. We don't have AC, so that's not good. But, if she does start > to get overheated, my parents only live a couple of miles away, and > they have central air...so I can take the kids over there for a > little bit, if I need to. I bought her some really cute tank top > onesis so wear when we go somewhere. > > My oldest is now 4 years old! Her birthday was Monday. She got > lots of new toys. Our 2 1/2 yr old is now excited for her birthday > in September. She wants cake and presents, just like her sister. > Oh, I also got Hannah a couple t-shirts from walmart that say, " Am I > cute or what? " , " If you think I's cute, you should see my grandma " , > and " I am the little sister " . They are so cute! LOL > > Ok, I think I am done talking for now, lol. I don't right on here > much, but I do read the emails everyday. Good luck to everyone! > > Jill > (4) > Milena (2 1/2, unresolved plagio) > Hannah (7 months, severe plagio, soon to be banded) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi Jill, Thanks for the update. I'm glad things are moving along for you! My Hannah was actually banded for two summers and it is defnitely manageable. You may want to consider buying a window a/c unit for her bedroom though b/c sleeping will probalby be tough w/out one. Keepus posted! , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.tyepad.com > Just wanted to update again. We just got our medicall assistance > card yesterday, so anything that our BCBS doesn't cover, the MA > should. So, I sent the signed forms back to Hershey, Pa today so > they can start getting the approval from MA, they already got it > from BCBS. So, once that goes through we will make our appt for > casting! It is the starband that they use, just in case I have not > mentioned that before. So far, they all seem very familiar with > it. I am excited, scared, and nervous...all sorts of emotions! I > am a little worried being that she will have it on during the > hottest months of the year! She already overheats easily. I'll be > putting her in just a diaper all summer and I'll have the fan on > her. We don't have AC, so that's not good. But, if she does start > to get overheated, my parents only live a couple of miles away, and > they have central air...so I can take the kids over there for a > little bit, if I need to. I bought her some really cute tank top > onesis so wear when we go somewhere. > > My oldest is now 4 years old! Her birthday was Monday. She got > lots of new toys. Our 2 1/2 yr old is now excited for her birthday > in September. She wants cake and presents, just like her sister. > Oh, I also got Hannah a couple t-shirts from walmart that say, " Am I > cute or what? " , " If you think I's cute, you should see my grandma " , > and " I am the little sister " . They are so cute! LOL > > Ok, I think I am done talking for now, lol. I don't right on here > much, but I do read the emails everyday. Good luck to everyone! > > Jill > (4) > Milena (2 1/2, unresolved plagio) > Hannah (7 months, severe plagio, soon to be banded) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Jill, Let us know when you get your casting appointment! Hopefully it'll be soon. > Just wanted to update again. We just got our medicall assistance > card yesterday, so anything that our BCBS doesn't cover, the MA > should. So, I sent the signed forms back to Hershey, Pa today so > they can start getting the approval from MA, they already got it > from BCBS. So, once that goes through we will make our appt for > casting! It is the starband that they use, just in case I have not > mentioned that before. So far, they all seem very familiar with > it. I am excited, scared, and nervous...all sorts of emotions! I > am a little worried being that she will have it on during the > hottest months of the year! She already overheats easily. I'll be > putting her in just a diaper all summer and I'll have the fan on > her. We don't have AC, so that's not good. But, if she does start > to get overheated, my parents only live a couple of miles away, and > they have central air...so I can take the kids over there for a > little bit, if I need to. I bought her some really cute tank top > onesis so wear when we go somewhere. > > My oldest is now 4 years old! Her birthday was Monday. She got > lots of new toys. Our 2 1/2 yr old is now excited for her birthday > in September. She wants cake and presents, just like her sister. > Oh, I also got Hannah a couple t-shirts from walmart that say, " Am I > cute or what? " , " If you think I's cute, you should see my grandma " , > and " I am the little sister " . They are so cute! LOL > > Ok, I think I am done talking for now, lol. I don't right on here > much, but I do read the emails everyday. Good luck to everyone! > > Jill > (4) > Milena (2 1/2, unresolved plagio) > Hannah (7 months, severe plagio, soon to be banded) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Hi Jill, Thanks for the update. Glad to hear you got the MA card. I see you already have your overheating plan - LOL. The first day or two as her body adjusts you may want to plan on staying with your parents. After that fans and cool clothes should hopefully be enough. Happy birthday to ! na's is Sat. mom to na DOC Grad www.thefilyaws.comJill <gjcarr003@...> wrote: Just wanted to update again. We just got our medicall assistance card yesterday, so anything that our BCBS doesn't cover, the MA should. So, I sent the signed forms back to Hershey, Pa today so they can start getting the approval from MA, they already got it from BCBS. So, once that goes through we will make our appt for casting! It is the starband that they use, just in case I have not mentioned that before. So far, they all seem very familiar with it. I am excited, scared, and nervous...all sorts of emotions! I am a little worried being that she will have it on during the hottest months of the year! She already overheats easily. I'll be putting her in just a diaper all summer and I'll have the fan on her. We don't have AC, so that's not good. But, if she does start to get overheated, my parents only live a couple of miles away, and they have central air...so I can take the kids over there for a little bit, if I need to. I bought her some really cute tank top onesis so wear when we go somewhere.My oldest is now 4 years old! Her birthday was Monday. She got lots of new toys. Our 2 1/2 yr old is now excited for her birthday in September. She wants cake and presents, just like her sister. Oh, I also got Hannah a couple t-shirts from walmart that say, "Am I cute or what?", "If you think I's cute, you should see my grandma", and "I am the little sister". They are so cute! LOLOk, I think I am done talking for now, lol. I don't right on here much, but I do read the emails everyday. Good luck to everyone!Jill (4)Milena (2 1/2, unresolved plagio)Hannah (7 months, severe plagio, soon to be banded)For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Yeah, we just bought a window air conditioner for the living room, and she still sleeps in our bedroom and there is a window unit in there too. So, hopefully it will keep her cool enough. Thanks to everyone for their responses. Jill > > Just wanted to update again. We just got our medicall assistance > card yesterday, so anything that our BCBS doesn't cover, the MA > should. So, I sent the signed forms back to Hershey, Pa today so > they can start getting the approval from MA, they already got it > from BCBS. So, once that goes through we will make our appt for > casting! It is the starband that they use, just in case I have not > mentioned that before. So far, they all seem very familiar with > it. I am excited, scared, and nervous...all sorts of emotions! I > am a little worried being that she will have it on during the > hottest months of the year! She already overheats easily. I'll be > putting her in just a diaper all summer and I'll have the fan on > her. We don't have AC, so that's not good. But, if she does start > to get overheated, my parents only live a couple of miles away, and > they have central air...so I can take the kids over there for a > little bit, if I need to. I bought her some really cute tank top > onesis so wear when we go somewhere. > > My oldest is now 4 years old! Her birthday was Monday. She got > lots of new toys. Our 2 1/2 yr old is now excited for her birthday > in September. She wants cake and presents, just like her sister. > Oh, I also got Hannah a couple t-shirts from walmart that say, " Am I > cute or what? " , " If you think I's cute, you should see my grandma " , > and " I am the little sister " . They are so cute! LOL > > Ok, I think I am done talking for now, lol. I don't right on here > much, but I do read the emails everyday. Good luck to everyone! > > Jill > (4) > Milena (2 1/2, unresolved plagio) > Hannah (7 months, severe plagio, soon to be banded) > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 Manon, It sounds like you are on your way! I'm glad you are going the extra mile for CT and you liked them! I drive 6 hours each way to CT and it's so worth it. By the way the casting isn't really as bad as you think. It wasn't for us anyways. Waydon didn't cry a bit until she had to take the hardened cast off his head right at the end. It doesn't last very long. I brought a ring pop and Wadyon loved that, and some plastic (washable) toys to play with. They can see through that netting thing, and CT does this so often that they are really good at it. We had to go through the casting once before with our ill-fitting helmet and Waydon cried the whole time during that one, and the way that ortho did it compared to the way CT did it I can see why!!! Good luck with everything!! Lacy Waydon's mom 8 months DOCband 6/20 > I know it's been a few weeks since I've posted but I've been away and > just came back from my second appointment this week for my sons plagio > . I've gotten so much help from everyone on this board and would not > be in the position I am right now if it were not for the guidance and > support of this group. Thanks so very much :-) > Anyway, we started on Monday at Kennedy Krieger Institute in Baltimore > to meet with Dr. Trovato. She just started a research and > development clinic there in January for plagiocephaly. We met with > her and a physical therapist and they evaluated him for 2 hours. I > finally had the answers I had been looking for. My son has moderate > to severe brachycephaly with mild plagio and head tilt that they felt > was not due to tort. They did recommend that if we decided to treat > his brachy, that we do it now since he is going into his 8th month. > They said that we should consider CranioSacral therapy along with the > band and that we should start stretching exercises for his head tilt. > So then off to CT this morning..... A 2 hour drive there but worth > every minute. They also evaluated him and told us the same thing the > doctor had. So all we have to wait for now is approval from our > insurance company and will finally get his band. My husband and > I felt so good about our decision to pursue this and where it has > brought us. I'm a little freaked out about the casting process. The > pictures of the process REALLY freaked me out. My son hates when > anything is over his face so I can imagine what that's going to be > like. I just have to tell myself that it's only a few minutes and it > well worth it.... :-) > Thanks again for everything and I'll be posting our progress as we go > along. > > Manon > Mom to > Brachy/seeking treatment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 Manon, It sounds like you are on your way! I'm glad you are going the extra mile for CT and you liked them! I drive 6 hours each way to CT and it's so worth it. By the way the casting isn't really as bad as you think. It wasn't for us anyways. Waydon didn't cry a bit until she had to take the hardened cast off his head right at the end. It doesn't last very long. I brought a ring pop and Wadyon loved that, and some plastic (washable) toys to play with. They can see through that netting thing, and CT does this so often that they are really good at it. We had to go through the casting once before with our ill-fitting helmet and Waydon cried the whole time during that one, and the way that ortho did it compared to the way CT did it I can see why!!! Good luck with everything!! Lacy Waydon's mom 8 months DOCband 6/20 > I know it's been a few weeks since I've posted but I've been away and > just came back from my second appointment this week for my sons plagio > . I've gotten so much help from everyone on this board and would not > be in the position I am right now if it were not for the guidance and > support of this group. Thanks so very much :-) > Anyway, we started on Monday at Kennedy Krieger Institute in Baltimore > to meet with Dr. Trovato. She just started a research and > development clinic there in January for plagiocephaly. We met with > her and a physical therapist and they evaluated him for 2 hours. I > finally had the answers I had been looking for. My son has moderate > to severe brachycephaly with mild plagio and head tilt that they felt > was not due to tort. They did recommend that if we decided to treat > his brachy, that we do it now since he is going into his 8th month. > They said that we should consider CranioSacral therapy along with the > band and that we should start stretching exercises for his head tilt. > So then off to CT this morning..... A 2 hour drive there but worth > every minute. They also evaluated him and told us the same thing the > doctor had. So all we have to wait for now is approval from our > insurance company and will finally get his band. My husband and > I felt so good about our decision to pursue this and where it has > brought us. I'm a little freaked out about the casting process. The > pictures of the process REALLY freaked me out. My son hates when > anything is over his face so I can imagine what that's going to be > like. I just have to tell myself that it's only a few minutes and it > well worth it.... :-) > Thanks again for everything and I'll be posting our progress as we go > along. > > Manon > Mom to > Brachy/seeking treatment Quote Link to comment Share on other sites More sharing options...
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