Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Marti, I wanted to welcome you to our group. I'm so sorry you've had pancreatitis, though. This group has been a wonderful help to me. It sure sounds like you've got chronic pancreatitis. One thing about it, when you are about to have an attack (if you can tell, sometimes you can't tell before hand), do not eat anything. Any food by mouth can make it worse. That's one of the reasons why I always hike myself to the ER when I've got an attack. However, I'm lucky in that I have a huge history of attacks and am rarely accused of drinking since I have a birth defect that caused it. Your drinking, if you had done it over a long period of time, 6-12 years, could have damaged the pancreas some and made you susceptible to an attack, even though you are no longer drinking. Unfortunately, for some of us, it turns chronic. If you want to look up more stuff on pancreatitis, particularly chronic, look up the johns hopkins gi website. They have a lot of really good information, including diagrams of what's going on. http://hopkins-gi.org/subspecialties/chronic/ I'm also currently dealing with a minor flareup and today was my first day since Sunday eating solid food. I've got a milder form than a lot of the others on this group. The nausea is a frequent symptom of chronic pancreatitis, along with the diarrhea. Sounds like you've got a good doctor there, keep him. Many doctors don't diagnose this as quickly, so it sounds like this guy knows what he' talking about. Let us know what the results are from your hidoscan. Kimber -- Kimber hominid2@... California State Chapter Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Here's the letter that helped us get Oxford to pay for 's formula. ______is under my care for the treatment of failure to thrive and reflux. Patients with these particular disorders are often able to successfully consume Peptamen Jr. formula. It is my belief it is essential for the child to continue using this product. The family has indicated to me that the purchase of this product will result in great financial burden. Thus, in the interest of providing proper medical support, I recommend that your Insurance Company help defray the cost of Peptamen Junior by providing the means for the family to receive reimbursement. Re: Back to school Hi Joan, I was wondering where you live? I ask because we live in New Hampshire and school doesn't start here for another 3 weeks. Also, I was wondering if Ian needs speech therapy or O/T or P/T therapy and is he getting that through the school system. I ask these because if you feel that Ian needs help you can request the school develop an IEP (Individual Education Plan) that would include any special instructions needed for Ian. Some on this list have had their children do a show and tell where they get up in front of the class and tell all about RSS and then answer any questions. The ones who have done this have reported that it has helped reduce any teasing by classmates. Last, I would also suggest ( if you can ) to go and observe Ian in class. Most teachers are glad when parents do this but some unfortunately object. Despite their objections they cannot prevent you from observing. I would strongly recommend at least one observation day. We did this and learned some disturbing things about my son's presschool. As a result, we now have him in a private preschool which is a much safer environment. Any way, I hope Ian is enjoying school and that you are pleased with his teacher. Ken M > Hi all, > I haven't written in a long while due to many things going on with > a and my family. We weren't able to attend the convention due > to the fact that my dad was going into the hospital that week for a > bowel resection. It was discovered that he has colon cancer stage > C3, in July and thank goodness his doctors moved swiftly, but it > interferred with our convention plans. He is now undergoing chemo & > actually doing well. In the mean time, we found an intense > communication camp for a(6 hours a day of training!). It was > called PECs camp and she responded very well to this communication > system. Unfortunately for a, in addition to RSS she also is > showing to have PDD which is a form of Autism Spectrum disorder. > However, she does not have an actual diagnosis yet, but we see a > neurologist in 2 wks. The PECs is used with kids with communication > disorders, as well as, Autism. The hard part is that she's deaf in > the one ear and is having hearing loss in her other ear. We are > hoping the neurologist can give us some sort of solid diagnosis > because for a while I thought she " just " had ADD. Then again she is > a visual learner due to the hearing loss. So, lack of interest in an > auditory style classroom makes sense to me! So, now we are really > trying to be the best advocates we can for her in making sure she has > the correct type of learning. Also, Dr. H. told us in our May visit > that she won't put a on GHT until we can get this > communication thing straightened out. Now that we have comm. > underway we look forward to our next visit to New York on August > 31st. Will anyone else be there then? > Take Care to all! > And hug your special kids for me!!!! > Sincerely, > Diane > (mom to a, RSS, UPD7, 4yrs. 5mos., 28.5 lbs, 36 in. & > , 7, non-RSS, awesome big bro!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2001 Report Share Posted October 15, 2001 Everyone: I have an idea. To keep the digest postings more concise I would like to suggest a plan. When you are responding to a members posting, please include just that one along with yours. When you are done, please cut the rest of the comments under yours and the post you are commenting on. It will save those of us who use the digest method much time. Thank you. Also thank you so much to these dear people for the kind words of encouragement: Carol, Tree, Barb and . It is friends like you that make me want to go through with this horrible treatment. Air hugs as Jackie says. Love, Suzanne in Juneau, Alaska > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
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