Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 I was just at Cranial tech yesterday and asked about the tightness on the cheek. There was a visiting tech from Dallas (Vicki) I really liked her. I said that Maggie's band looked tight around her right cheek and she said that the band is resting there so that the band on that side could remain loose to allow for growth in that area. Am I explaining this right? It made sense to me when she said it. Thought this would reassure you. Kaycee in Albany > as I understand it, it doesn't take much to inhibit growth. so I am > wondering, if the sides of the band that are resting on the cheeks > like sideburns, will it inhibit growth of the cheeks where it is > " pressing " ? because as this band is, it is pressing on the side of > his face that is already smaller. we don't need any more asymmetry > over there! but on the side that is fuller, it's not pressing at all, > but if anything is up on the ear. diane and andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 My daughter was in a DOC Band this past summer with about 70% correction. Her " sideburn " on the recessed side of her face rested on her cheekbone, too, which bothered me, actually. I asked several times about it and was always reassured, but I still question whether it inhibited growth outward of that cheek. The cheekbone wasn't up higher than the prominent side, so I don't think that drove the design (i.e. an attempt to encourage the cheekbone downward). Perhaps we're trading forehead correction for cheek correction? Not sure ... but I'd sure like to hear from others on this. Seems to me you'd want the cheek unihibited to allow it to grow outward as much as possible on the smooshed side. Her forehead did " pop out " nicely .... but that cheek not so well. Joan > > as I understand it, it doesn't take much to inhibit growth. so I am > > wondering, if the sides of the band that are resting on the cheeks > > like sideburns, will it inhibit growth of the cheeks where it is > > " pressing " ? because as this band is, it is pressing on the side of > > his face that is already smaller. we don't need any more asymmetry > > over there! but on the side that is fuller, it's not pressing at > all, > > but if anything is up on the ear. diane and andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 hhmmm.. my problem is that that is the side of the buldge for us!! I really think they messed up this band big time. diane geoconlaw@... wrote: > I was just at Cranial tech yesterday and asked about the tightness on > the cheek. There was a visiting tech from Dallas (Vicki) I really > liked her. I said that Maggie's band looked tight around her right > cheek and she said that the band is resting there so that the band on > that side could remain loose to allow for growth in that area. Am I > explaining this right? It made sense to me when she said it. > Thought this would reassure you. Kaycee in Albany > > > > as I understand it, it doesn't take much to inhibit growth. so I am > > wondering, if the sides of the band that are resting on the cheeks > > like sideburns, will it inhibit growth of the cheeks where it is > > " pressing " ? because as this band is, it is pressing on the side of > > his face that is already smaller. we don't need any more asymmetry > > over there! but on the side that is fuller, it's not pressing at > all, > > but if anything is up on the ear. diane and andy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 http://www.growthcharts.com Question about Growth Today we went to the Cardiology Clinic to have our annual echocardiogram of Blake's heart. Blake had a AVSD repaired when he was 3 months old. I was a little worried about how it would turn out because I've had doctors tell just within the past few months that they hear a murmur. Also, he hasn't grown at all for about 7 months. Whenever we go to the doctor I record his height and weight on a chart I printed off the internet for kids with DS. The cardiologist says Blake has a high pitched murmur, which is usually caused by a valve. He said the echocardiogram showed nothing though. I'm still a little worried. I can't figure out why he isn't growing. He's always been a little chubby, so the fact that he hasn't gained weight isn't as distressing as the fact that he is not growing in height. I think at his age that 7 months is a long time to not grow. We've had GERD and aspiration issues, but I think we have them resolved. Our last thyroid test showed " compensated hypothyroidism " , but it is still within the range that they don't medicate. He's been having some feeding issues (food refusal) and aggressive behavior that may or may not be connected. Any ideas??? Schulte Mom to Blake - 2 1/2 with ds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 In a message dated 4/1/2003 8:53:22 PM Eastern Standard Time, _Schulte@... writes: << We've had GERD and aspiration issues, but I think we have them resolved. Our last thyroid test showed " compensated hypothyroidism " , but it is still within the range that they don't medicate. He's been having some feeding issues (food refusal) and aggressive behavior that may or may not be connected. >> , Is he walking or trying to? The extra effort burns up a lot of energy. I see it in my great niece (18 months). She used to have the most chubby thighs I ever saw on a little one, but once she started walking they went away. Sounds like you're right smack in the terrible two's (food refusal was the hint.) By " compensated hypothyroidism " , does it mean TSH is up and T3 and T4 are ok? That may just be a zinc issue. I'll attach my favorite Medscape abstract on zinc just in case. It worked for Liam. Kathy, Liam's mom( 5) 1: Biol Trace Elem Res 1999 Mar;67(3):257-68 Related Articles, Books, LinkOut Zinc sulfate supplementation improves thyroid function in hypozincemic Down children. Bucci I, Napolitano G, Giuliani C, Lio S, Minnucci A, Di Giacomo F, Calabrese G, Sabatino G, Palka G, Monaco F Cattedra di Endocrinologia, Universita G. D'Annunzio, Chieti, Italy. In subjects affected by trisomy 21 (Down syndrome), hypothyroidism is the most common endocrinological deficit. Plasma zinc levels, which are commonly detected below the normal range in Down patients, are related to some endocrinological and immunological functions; in fact, zinc deficiency has been shown to impair immune response and growth rate. Aims of this study were to evaluate (1) the role of zinc deficiency in subclinical hypothyroidism and (2) thyroid function changes in Down children cyclically supplemented with zinc sulfate. Inverse correlations have been observed between age and triiodotironine (T3) and between zinc and thyroid-stimulating hormone (TSH); higher TSH levels have been found in hypozincemic patients at the beginning of the study. After 6 mo of supplementation, an improvement of thyroid function (TSH levels: 3.96 1.84 vs 2.64 1.33 mUI/mL basally and after 6 mo, respectively) was observed in hypozincemic patients. In the second cycle of supplementation, a similar trend of TSH was observed. At the end of the study, TSH significantly decreased in treated hypozincemic subjects (4.48 1.93 vs 2.96 1.20 mUI/mL) and it was no longer different in comparison to normozincemic patients. We suggest zinc supplementation to the diet in hypozincemic Down children as a simple and useful therapeutic tool. Publication Types: Clinical trial PMID: 10201332, UI: 99215515 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Yes the T4 was is a little low, but still ok and the Thyroid Stimutlating Hormone (TSH) is elevated. Meaning it's keeping the T4 in check. Thanks for the article. I give Blake zinc. We were giving him 15 mgs. but I increased it to30 mgs. That's about 1mg. per lb. of body weight? How much is too much zinc? Schulte By " compensated hypothyroidism " , does it mean TSH is up and T3 and T4 > are ok? That may just be a zinc issue. I'll attach my favorite Medscape > abstract on zinc just in case. It worked for Liam. > > Kathy, Liam's mom( 5) > > > 1: Biol Trace Elem Res 1999 Mar;67(3):257-68 > Related Articles, Books, LinkOut > > > Zinc sulfate supplementation improves thyroid function in hypozincemic > Down children. > > Bucci I, Napolitano G, Giuliani C, Lio S, Minnucci A, Di Giacomo F, Calabrese > G, > Sabatino G, Palka G, Monaco F > > Cattedra di Endocrinologia, Universita G. D'Annunzio, Chieti, Italy. > > In subjects affected by trisomy 21 (Down syndrome), hypothyroidism is the > most common > endocrinological deficit. Plasma zinc levels, which are commonly detected > below the normal > range in Down patients, are related to some endocrinological and > immunological functions; in fact, > zinc deficiency has been shown to impair immune response and growth rate. > Aims of this study > were to evaluate (1) the role of zinc deficiency in subclinical > hypothyroidism and (2) thyroid > function changes in Down children cyclically supplemented with zinc sulfate. > Inverse correlations > have been observed between age and triiodotironine (T3) and between zinc and > thyroid-stimulating hormone (TSH); higher TSH levels have been found in > hypozincemic patients > at the beginning of the study. After 6 mo of supplementation, an improvement > of thyroid function > (TSH levels: 3.96 1.84 vs 2.64 1.33 mUI/mL basally and after 6 mo, > respectively) was > observed in hypozincemic patients. In the second cycle of supplementation, a > similar trend of > TSH was observed. At the end of the study, TSH significantly decreased in > treated hypozincemic > subjects (4.48 1.93 vs 2.96 1.20 mUI/mL) and it was no longer different in > comparison > to normozincemic patients. We suggest zinc supplementation to the diet in > hypozincemic Down > children as a simple and useful therapeutic tool. > > Publication Types: > Clinical trial > > PMID: 10201332, UI: 99215515 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 I didn't really explain " food refusal " very well. I don't mean when a 2-yr old doesn't want to eat when his parents want to feed him. It is a term I picked up off a " feeding list " that I am on. Many of the parents on this list have kids with GERD. One mom told me that her son would sign EAT, but then when it was time to eat he would put his face up to the food and shake his head " NO " . She said when he got older he told her that he did this because he knew it would hurt if he ate, (because of the reflux) but he was hungry. Blake does a version of this. He signs " eat " , but when I try to feed him getting the first bite down is tough. He sees the food and covers his eyes and grimaces. Maybe he's just a really character. I'll be sooooo glad when he can talk! Schulte >He's been having some feeding > issues (food refusal) and aggressive behavior that may or may not be > connected. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Blake's T4 has been yoyo'ing for about a year and a half. Two different doctors have told me as long as his TSH is keeping the T4 in check that medicating him won't help. (It also says this in the book " medical care of children with ds " ) I got a second opinion on this. This last thyroid test was about a month ago. Blake is at the highest dose of PPI's (reflux meds) allowed for a child his age. I've been working very hard to keep him away from foods that will encourage GERD. Citric Acid (acid found in citrus fruit) is a big one, so I've started reading the label of everything I give him to ensure this isn't in his food. They put this stuff in as a preservative. It's even in children's vitamins. The only option left for him as far as reflux goes is surgery. Many parents on the " feeding list " say abdominal surgery for reflux should be treated as a last resort, because there are often complications due to hypotonia in the abdominal wall. We are trying to avoid surgery, but haven't ruled it out all together. Thank you for the suggestions. Schulte > How long ago was Thyroid tested? If it is borderline, why not treat and for 3 -6 months and see if there is a difference? > > I would question the GERD issue more. Maybe the meds aren't working well. > > mom to Bridget almost 10...she can talk, but rarely tells me when something hurts like a headache/stomach ache/ or even leg pain she has with growing..... > Re: Question about Growth > > > I didn't really explain " food refusal " very well. I don't mean when a 2-yr > old doesn't want to eat when his parents want to feed him. It is a term I > picked up off a " feeding list " that I am on. Many of the parents on this > list have kids with GERD. One mom told me that her son would sign EAT, but > then when it was time to eat he would put his face up to the food and shake > his head " NO " . She said when he got older he told her that he did this > because he knew it would hurt if he ate, (because of the reflux) but he was > hungry. > > Blake does a version of this. He signs " eat " , but when I try to feed him > getting the first bite down is tough. He sees the food and covers his eyes > and grimaces. > > Maybe he's just a really character. I'll be sooooo glad when he can talk! > > Schulte > > >He's been having some feeding > > issues (food refusal) and aggressive behavior that may or may not be > > connected. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 We also took him off milk and wheat because I thought he might be allergic and it could be encouraging the reflux. The surgery sometimes doesn't affectively stop the GERD and some kids end up with feeding tubes after surgery. Then you have to wean them off the tube and there are often reflux issues again. I learned at the health food store over the weekend that calcium supplements have helped with reflux, so we are trying that too. Schulte > I would question the GERD issue more. Maybe the meds aren't working well. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 , How long ago was Thyroid tested? If it is borderline, why not treat and for 3 -6 months and see if there is a difference? I would question the GERD issue more. Maybe the meds aren't working well. mom to Bridget almost 10...she can talk, but rarely tells me when something hurts like a headache/stomach ache/ or even leg pain she has with growing..... Re: Question about Growth I didn't really explain " food refusal " very well. I don't mean when a 2-yr old doesn't want to eat when his parents want to feed him. It is a term I picked up off a " feeding list " that I am on. Many of the parents on this list have kids with GERD. One mom told me that her son would sign EAT, but then when it was time to eat he would put his face up to the food and shake his head " NO " . She said when he got older he told her that he did this because he knew it would hurt if he ate, (because of the reflux) but he was hungry. Blake does a version of this. He signs " eat " , but when I try to feed him getting the first bite down is tough. He sees the food and covers his eyes and grimaces. Maybe he's just a really character. I'll be sooooo glad when he can talk! Schulte >He's been having some feeding > issues (food refusal) and aggressive behavior that may or may not be > connected. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 > > >Blake does a version of this. He signs " eat " , but when I try to feed him >getting the first bite down is tough. He sees the food and covers his eyes >and grimaces. > > Sounds like ! She did this for a long time, even after she could talk. We never figured out if it was reflux (she had a little, but nothing major), or a contol issue, but it made mealtimes miserable for all. Breakfast was the worst meal by far..... lunch and dinner were usually better, but occasionally dinner was ugly too! Before she was verbal, she would sign eat, and then start to cry when you gave her food. At the beginning, of course, we tried everything because we assumed she was trying to communicate that she wanted something different, etc (wrong color plate, who knows!) or that something hurt (like reflux). Sometimes feeding her made things better ( a last resort when the bus was coming), but even then, it didn't always make things OK..... she would cry, push the plate/bowl away, yell no. Then, she became much more verbal, and could tell us what she wanted, and we thought that " of course, if she tells me she wants X, then we will serve it and things will be fine " . Not the case. Although over time the " food refusal " decreased, she would still have a fit even after she had been given choices, agreed to them, and then pushed the food away. We did everything we could to make sure it wasn't a communication thing..... a typical breakfast was like this (about age 4)...... , do you want cereal or oatmeal for breakfast? (She said cereal). Do you want Honey Nut Cheerios or MiniWheats? (She says Cheerios). I then show her the boxes (in case she is just choosing, but doesn't know what she is picking, even though I know she knows) and say " Show me which one is Cheerios " (she chooses the correct box). Then I say, OK do you want to help me pour the Cheerios? (she says yes, helps me pour them into her bowl, helps me pour the milk, etc.). Then, as I stand back and hold me breath, she will look at the bowl like I had filled it with dog food, start to cry, yell no, and push the bowl away. We began treating it like a power struggle, and it worked much better. After the " first move " , usually her screaming and pushing the food away, we would tell her that " she did not have to eat, but it was not OK to scream at the table or push food " . I would usuually move the food towards her (within reach), and IGNORE ANYTHING FURTHER! She often carried on, pouted, yelled at me for awhile, but that got boring after awhile, and 95% of the time, she would just eat. Then, once she started eating, she was back to her pleasant self. I was still a little worried that there was an underlying physical reason for her refusal to eat, but when we finally saw her eating (after being ignored) and she was fine, we figured she was just using the oldest power struggle in the book :-) It is nice when they can communicate more! I know Blake has serious reflux issues, and this of course is probably playing a big role, but for whatever reason he is doing this, I hope it gets better soon. We probably have less than one table meltdown per week now...... it's great! , mom to (7), (5 DS), and (3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 LOL!! Thanks . It's nice to hear I'm not alone! Take Care, Schulte > Sounds like ! She did this for a long time, even after she > could talk. We never figured out if it was reflux (she had a little, > but nothing major), or a contol issue, but it made mealtimes miserable > for all. Breakfast was the worst meal by far..... lunch and dinner were > usually better, but occasionally dinner was ugly too! Before she was > verbal, she would sign eat, and then start to cry when you gave her > food. At the beginning, of course, we tried everything because we > assumed she was trying to communicate that she wanted something > different, etc (wrong color plate, who knows!) or that something hurt > (like reflux). Sometimes feeding her made things better ( a last resort > when the bus was coming), but even then, it didn't always make things > OK..... she would cry, push the plate/bowl away, yell no. Then, she > became much more verbal, and could tell us what she wanted, and we > thought that " of course, if she tells me she wants X, then we will serve > it and things will be fine " . Not the case. Although over time the " food > refusal " decreased, she would still have a fit even after she had been > given choices, agreed to them, and then pushed the food away. We did > everything we could to make sure it wasn't a communication thing..... a > typical breakfast was like this (about age 4)...... , do you > want cereal or oatmeal for breakfast? (She said cereal). Do you want > Honey Nut Cheerios or MiniWheats? (She says Cheerios). I then show her > the boxes (in case she is just choosing, but doesn't know what she is > picking, even though I know she knows) and say " Show me which one is > Cheerios " (she chooses the correct box). Then I say, OK do you want to > help me pour the Cheerios? (she says yes, helps me pour them into her > bowl, helps me pour the milk, etc.). Then, as I stand back and hold me > breath, she will look at the bowl like I had filled it with dog food, > start to cry, yell no, and push the bowl away. > > We began treating it like a power struggle, and it worked much better. > After the " first move " , usually her screaming and pushing the food away, > we would tell her that " she did not have to eat, but it was not OK to > scream at the table or push food " . I would usuually move the food > towards her (within reach), and IGNORE ANYTHING FURTHER! She often > carried on, pouted, yelled at me for awhile, but that got boring after > awhile, and 95% of the time, she would just eat. Then, once she started > eating, she was back to her pleasant self. I was still a little worried > that there was an underlying physical reason for her refusal to eat, but > when we finally saw her eating (after being ignored) and she was fine, > we figured she was just using the oldest power struggle in the book :-) > It is nice when they can communicate more! > > I know Blake has serious reflux issues, and this of course is probably > playing a big role, but for whatever reason he is doing this, I hope it > gets better soon. We probably have less than one table meltdown per > week now...... it's great! > > , mom to (7), (5 DS), and (3) > Quote Link to comment Share on other sites More sharing options...
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