Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 was a licker too (still is, but not like he was). It seemed to be his way to explore. He will also chew on some things, but rarely get them very far into his mouth. He used a pacifier for a long time, and then suddenly wanted nothing to do with it. I think he does not mind as long as he is in control, and he avoids swallowing. Sometimes he will ingest ice-cream and other sweet things, but then there are times he wants nothing to do with them. We plan to move on getting him to eat this summer, but it will be a long process. He's 10, and has not eaten since he was 1. Tim Hartshorne Tippy3286@... wrote: > From: Tippy3286@... > > hi everyone, > i have a question. my son, frankie, is 41/2. he has a trach & g-tube. > he is > very oral defensive. so defensive that we are unable to do any type of > > swallow study on him. anything we present to him, he coughs, gags, > clamps his > teeth on the spoon. when he does get alittle down, it comes out his > trach. so > the speech teacher and i gave up. afraid he would aspirate. this has > been > ongoing and very frustrating. but frankie will put just about anything > in his > mouth that he wants too. he eats chalk. his tongue is constantly out. > licking > everything he comes in contact with. furniture, toys, clothes, you > name it, > the tongue is out feeling, checking things out. how can this be? we > have > tried tricking him. but he's smart enough to know the difference. he > wont > feed himself, he will help us feed ourselves. understands the concept, > but > wants nothing to do with food. put it in front of him, he throws it. > although > he does like little sips of coke. maybe its the bubbles. he has had 3 > different speech teachers to work on this to no avial. we were told, > wait > till his trach is out, who knows when this is going to happen, were > working > on it know. Im so frustrated!! does anybody have any suggestion. They > would > be so appericated. > > tiffiny- mom to frankie-41/2(charger) ari-13, -10, nicky-9 > > -------------------------------------------------------------- > --------- > Looking to expand your world? > http://www.onelist.com > ONElist has over 165,000 e-mail communities from which to choose! > ----------------------------------------------------------------- > ------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a > member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Hi, was very oral at about 2 and even now he will still lick things that you wouldn't normally lick. However, has always eaten orally. We were putting an addition on our house and Matt took an exterior wall and made it an interior wall. Unfortunately, the exterior wall's shingles (under the vinyl siding) had lead paint on it. The boys both had elevated lead levels, 's was 25, but because was still so oral, his was 47! We were incredibly fortunate that we had a doctor's appt. scheduled at that time so we caught it early. The downside was that the state came in and inspected our 100+ year old house. It worked out in the end. The boys levels went down and we were able to get our house cleaned up. Also, used a pacifier until he was past 3. When he had his open heart surgery at 3, I told the nurse to give him the pacifier after he was extubated and to let him touch the yarn hair of his doll. She seemed dubious that it would work. Later she reported to us that he settle right down when she did what I told her. DUH, like I'm *just* his mother. Janet wife to Matt Mom to & (CHaRGEr) 7, nne 2, and Mom to 22 months, and 1. Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 Thanks for the tips. Yes, I think the eating party would be fun. Tim Keedy wrote: > > > S. Hartshorne wrote: > > We plan to move on getting him to eat this summer, but it will be a > long process. He's 10, and has not eaten since he > was 1. > > Tim, best of luck with eating this Summer. What do you think of > lots of kids getting together at the conference > and having a popsicle party or something like that to share that > eating experience and encourage one another?? > > Kendra did not begin to eat until nearly 5 years old (except her first > few months) and now does eat. The swallow > therapist could not promise us Kendra would become oral but she did. > There are a few things that seemed to help. > Perhaps you've done all of these, but just in case, here they are. > 1. thermal therapy with ice to waken the nerves > around the mouth. 2. Adjusting the hyoid bone to provide for better > positioning and swallowing. 3. exercises from > the HANDLE Institute that worked on the facial nerves and 4. Cranial > sacral therapy. > > Kendra has seemed much more interested in eating the last couple of > years but did eat completely adequately by about 3 > years after her initial thermal therapy. While she eats her entire > diet, and it includes pureed food and more solid > food (pea pods, cooked sliced carrots) she is still considered to have > swallow disorder to some degree because there > are still pureed elements to her diet. She does not eat a totally > solid diet. She still is never unattended while > eating but she does very well. > > > > ----- > ------------------------------------------------------------------ > Having difficulty getting " in synch " with list members? > http://www.onelist.com > Try ONElist's Shared Calendar to organize events, meetings and more! > -------------------------------------------------------------------- > --- > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a > member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 , Last week you wrote responding to Tim Hartshorne, " Perhaps you've done all of these, but just in case, here they are " . You went on to mention Thermal therapy, adjusting the hyoid bone, exercises for the HANDLE Institute for facial nerves and Cranial sacral therapy. I am ignorant of all of these suggestions. Since my granddaughter Emma is still on a g-tube(we are trying to get her to eat orally but she is not always receptive) I would be interested in learning more about these things. If you could tell me a little more about each when you get a chance, I hate to even ask you because I know how precious time is to all you moms but, I would really appreciate it. If you want, you can E-mail me privately. Thanks Katapodis Grandmother to CHaRgEr's Emma(5)and Diane (almost 4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Tonya- We had one session of CST for Aubrie. My sister is a massage therapist and has a colleague who is trained in CST. This woman does it for disabled children for free!! She lives 5 hrs from us so that's why we have only been able to fit one session in. Now the woman is moving to Oklahoma (I can find out which city if there's anyone near there who'd like to contact her once she's settled). The session itself was interesting. Very gentle and non-intrusive. The woman we had is a very intuitive, warm, caring individual. Our session was early on in Aubrie's life (I'd have to look at the calendar to find out how old she was). But it was quite emotional for me to have this caring woman lay her hands on my child and tell me things about her " energy " , etc. After the therapy we did notice an improvement in Aubrie's eating which was our biggest problem at the time. It may have been a coincidence. Hard to tell since we had only one session. I would do it again in a heartbeat if I felt that the therapist was qualified and if it didn't cost me an arm and a leg. Has anyone had this time of alternative therapy covered by insurance?? Michele mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Tonya Bordy wrote: > > > Katapodis wrote: > > > > > > > > , > > > > Last week you wrote responding to Tim Hartshorne, " Perhaps you've done all > > of these, but just in case, here they are " . You went on to mention Thermal > > therapy, adjusting the hyoid bone, exercises for the HANDLE Institute for > > facial nerves and Cranial sacral therapy. I am ignorant of all of these > > suggestions. Since my granddaughter Emma is still on a g-tube(we are trying > > to get her to eat orally but she is not always receptive) I would be > > interested in learning more about these things. If you could tell me a > > little more about each when you get a chance, I hate to even ask you because > > I know how precious time is to all you moms but, I would really appreciate > > it. If you want, you can E-mail me privately. > > > > Thanks > > Katapodis > > Grandmother to CHaRgEr's Emma(5)and Diane (almost 4) > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Katapodis wrote: > > > > , > > Last week you wrote responding to Tim Hartshorne, " Perhaps you've done all > of these, but just in case, here they are " . You went on to mention Thermal > therapy, adjusting the hyoid bone, exercises for the HANDLE Institute for > facial nerves and Cranial sacral therapy. I am ignorant of all of these > suggestions. Since my granddaughter Emma is still on a g-tube(we are trying > to get her to eat orally but she is not always receptive) I would be > interested in learning more about these things. If you could tell me a > little more about each when you get a chance, I hate to even ask you because > I know how precious time is to all you moms but, I would really appreciate > it. If you want, you can E-mail me privately. > > Thanks > Katapodis > Grandmother to CHaRgEr's Emma(5)and Diane (almost 4) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Michele: gets a half hour massage per week at the same office where he gets PT and OT privately. This massage includes some Cranial Sacral work. My insurance covers it 100%, but I think that it is because they have not yet realized that it is massage as opposed to OT or PT. I realize I am so lucky... Ana Saruski, mom to 6 CHARGE, and Jordy, 3 1/2 Miami Beach, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 Ana- You (and ) are lucky! What do you think the benefits have been for ? I know it's hard to decide which benefits are due to which therapy. Is the massage that he gets (except for the CST part) just basic therapeutic massage? I am learning infant massage to use with Aubrie. I wonder if she'll get similar benefit from it. I imagine that the touch itself is most important and that technique, while important, could be considered secondary if our choice is massage by mom or none at all. Good for you for finding an arrangement like for ! Michele Anaesq@... wrote: > From: Anaesq@... > > Michele: > > gets a half hour massage per week at the same office where he gets PT > and OT privately. This massage includes some Cranial Sacral work. My > insurance covers it 100%, but I think that it is because they have not yet > realized that it is massage as opposed to OT or PT. I realize I am so > lucky... > > Ana Saruski, mom to 6 CHARGE, and Jordy, 3 1/2 > Miami Beach, FL > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 Michele: Massage has helped keep more calm and organized in general. I would not have been able to tell you what the benefits for are if his massage therapist hadn't had surgery and taken a few weeks off. It has now been three weeks since his last massage, and 's agressive behavior has increased since the massage stopped. Hopefully in a couple of weeks the massage will resume and he'll start to calm down again. What he gets is regular therapeutic massage, with a CST comonent. The therapist tells me that guides her hands where he wants her to massage him. Ana Saruski, Mom to , 6 CHARGE, and Jordy, 3 1/2 Miami Beach, FL (Where it hasn't stopped raining for two weeks!) Quote Link to comment Share on other sites More sharing options...
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