Guest guest Posted August 8, 1998 Report Share Posted August 8, 1998 In a message dated 98-08-08 22:57:33 EDT, you write: << We aren't doing very well here. Any problems with the pregnancies? Any meds during pregnancy? I took synthroid. I was also on and off antibiotics. >> I was extremely sick during my pregnancy I was hospitalized for a total of almost 6 weeks - off an on - IV fluids and could not keep any food down. I was violently ill - mainly from 20 weeks on. I was on lots of GI meds and even compazine when I would start to throw up violently. It did not help matters that I had to have my gallbladder removed 8 weeks post partum - apparently it was one of the most diseased and rotted ones the docs have seen in a long time. >>And no, I didn't know the prilosec could be made into a liquid. << You cannot get it at a pharmacy - Dr, prescribed it as a last ditch effort before surgery for Clayton following his last horrible ph probe - no luck - they actually have to compound it and mix it with I believe sodium bicarbonate at the pharmacy located at St. Chris. love, sharon mommy to Jake (5)-nda, and fraternal 34.5 week twins Cole (3/30/97) - nda (reformed refluxer) and Clayton(3/30/97) (eosinophil gastroenteritis, mild developmental delays, food allergies (milk, soy, egg, wheat) Nissen and g-tube scheduled 8/14/97) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1998 Report Share Posted August 8, 1998 In a message dated 98-08-08 23:07:36 EDT, you write: << > doesn't get any skin problems but his asthma does get bad when he eats what he isn't supposed to plus he starts having diarrhea within minutes.<< Clayton who has problems pooping also starts to have diareha(sp) when he eats things he should not - actually it is the only time he goes without problems - but his problems pooping are mainly due to some gastric emptying delay. > He also had apnea, bradys, (was on a monitor for 16 months), trouble with keeping his temperature, and bilirubin.<, THis is exactly Clayton. On an apnea monitor for a long time mainly for bradys also - he still gets them while under ansthesia so they know to keep an eye on him. He had problems maintaining his temp and bilirubin. > >> My pregnancy was horrible after 24 weeks.<< I went into labor and 20 weeks and was in labor off and on due to dehydration until I delievered at 34.5 weeks. >> I was on Terbutaline>> I was also on this off an on while in the hospital. love, sharon mommy to Jake (5)-nda, and fraternal 34.5 week twins Cole (3/30/97) - nda (reformed refluxer) and Clayton(3/30/97) (eosinophil gastroenteritis, mild developmental delays, food allergies (milk, soy, egg, wheat) Nissen and g-tube scheduled 8/14/97) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1998 Report Share Posted August 8, 1998 > Does anyone have children with IgG based allergies? Has anyone elses child > been tested for this? > has not had any type of allergy testing. Dr. Friesen told us at his age and with EG, they are unreliable. > > Besides the ecezma, any other skin problems, like hives? AJ's are severe. > doesn't get any skin problems but his asthma does get bad when he eats what he isn't supposed to plus he starts having diarrhea within minutes. > Arissa was in the NICU for failure to breathe but was breast fed. > was in the NICU for a few weeks but he was 32 weeks so that wasn't unusual. He mostly refused to eat, I keep wondering if that was the start of EG but it is very common for preemies to not eat. He also had apnea, bradys, (was on a monitor for 16 months), trouble with keeping his temperature, and bilirubin. > Clayton couldn't poop and Aj couldn't wait. She went before she was born. > went before he was born too. Did they think AJ swallowed the merconium? > We aren't doing very well here. Any problems with the pregnancies? Any > meds during pregnancy? I took synthroid. I was also on and off > antibiotics. > My pregnancy was horrible after 24 weeks. I went into labor at 24 weeks and didn't stop contracting until I had , even after being hospitalized for 3 weeks at 29 weeks. At 32 weeks, the docs decided to go ahead and let me deliver because wasn't giving them a choice. I was on Terbutaline and Procardia from 24 weeks and Magnesium with them from 29-32 weeks. I also had 8 weeks of Betamethasone(sp?) shots to mature his lungs although it didn't work. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 1998 Report Share Posted August 8, 1998 /i had bad pregnancy as well ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: IgE reactions and other common denominators > Date: Saturday, August 08, 1998 11:20 PM > > > > > > > Does anyone have children with IgG based allergies? Has anyone elses > child > > been tested for this? > > > has not had any type of allergy testing. Dr. Friesen told us at his > age and with EG, they are unreliable. > > > > > Besides the ecezma, any other skin problems, like hives? AJ's are > severe. > > > doesn't get any skin problems but his asthma does get bad when he > eats what he isn't supposed to plus he starts having diarrhea within > minutes. > > > Arissa was in the NICU for failure to breathe but was breast fed. > > > was in the NICU for a few weeks but he was 32 weeks so that wasn't > unusual. He mostly refused to eat, I keep wondering if that was the start > of EG but it is very common for preemies to not eat. He also had apnea, > bradys, (was on a monitor for 16 months), trouble with keeping his > temperature, and bilirubin. > > > Clayton couldn't poop and Aj couldn't wait. She went before she was > born. > > > went before he was born too. Did they think AJ swallowed the > merconium? > > > We aren't doing very well here. Any problems with the pregnancies? Any > > meds during pregnancy? I took synthroid. I was also on and off > > antibiotics. > > > My pregnancy was horrible after 24 weeks. I went into labor at 24 weeks > and didn't stop contracting until I had , even after being > hospitalized for 3 weeks at 29 weeks. At 32 weeks, the docs decided to go > ahead and let me deliver because wasn't giving them a choice. I was > on Terbutaline and Procardia from 24 weeks and Magnesium with them from > 29-32 weeks. I also had 8 weeks of Betamethasone(sp?) shots to mature his > lungs although it didn't work. > > Dawn > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 <> Does anyone have children with IgG based allergies? Has anyone elses child been tested for this? AJ tested positive to 23 foods this way. It is supposedly not as accurate but how many of us had kids tested the accurate way and gotten a false positive or a false negative? Besides the ecezma, any other skin problems, like hives? AJ's are severe. Arissa was in the NICU for failure to breathe but was breast fed. Clayton couldn't poop and Aj couldn't wait. She went before she was born. We aren't doing very well here. Any problems with the pregnancies? Any meds during pregnancy? I took synthroid. I was also on and off antibiotics. And no, I didn't know the prilosec could be made into a liquid. Two different docs prescribed it at two different children's hospitals and no one told me. They both explained to give it to her by opening the capsule up. And at the begining, when we had a tough time getting it in her, I asked at the pharmacy. Thanks for the info!!! Phyllis-mom to Arissa (12/22/95) EG, multiple food allergies, occasional asthma Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and latex Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 In a message dated 98-08-09 09:33:20 EDT, you write: << Several of us from the GT list have been able to get the local civilial pharmacists to mix up the Prilosec liquid for us. I just had them call the Rph at Watler and he told him what to do. >> : Have yhou and any of the others found that the liquid prilosec worked better. It did not for clayton, but hopefully it will for others. love, sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 In a message dated 98-08-09 09:39:07 EDT, you write: << I bet we will find an allergic tendency in all our families that led to this and we just got " lucky " to have this particular allergic phenomenon in our kids. They are gene mapping my family and extended family and scoping my brothers too (my father unfortunately died years ago after an anti-reflux surgery -- before EG was even a known disease). to see if there is a mappable link. >> : Interesting, I almost ended up with a central line when I was pregnant due to be so sick. Luckily it was avoided. We have a very allergic family, me, my brotehr, both my parents, barry, Jake (my older son - allergic to milk protein, asthma and reformed reflux, 4 sets of ear tubes, tonsils and adenoids out). ALso I have reflux (pretty severe buyt controlled usually by medicine). ALl three of my kids had reflux, although only clayton has ended up with severe problems. Jake is now healthy and can have some processed milk products but one sip of milk gives him hives and makes him sick. He s also skinny for five about 37 pounds and about 41-42 inches. Cole is the healthest with no known food allergies - and he drinks whole milk, and eats everrything. All my kids have had problems with numerous ear infection, see Jake above and COle also had tubes at 9onth. Clayton needed them, but with so much going on we held off and since the spring he luckily has been ear infection free. Anyone elses kids have recurrent ear infections requiring tubes? How about sleep apnea? love, sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 Several of us from the GT list have been able to get the local civilial pharmacists to mix up the Prilosec liquid for us. I just had them call the Rph at Watler and he told him what to do. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 Four of our five have elevated IgE and elevated peripheral (blood) eosinophil counts. THey all had different food allergies. THe fifth one did NOT have elevated IgE or eos (blood) but did have eos in the esophagus. He is the only one NOT on prednisone yet. He is also the one from my worst pregnancy. (I ended up on TPN from my own EE and esophageal stricture). Actually our sickest two kids were the result of my easiest two pregnancies so I dont think that is it. I bet we will find an allergic tendency in all our families that led to this and we just got " lucky " to have this particular allergic phenomenon in our kids. They are gene mapping my family and extended family and scoping my brothers too (my father unfortunately died years ago after an anti-reflux surgery -- before EG was even a known disease). to see if there is a mappable link. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 I only use the liquid PRilosec on the GT fed kid and it works to keep the ulcers at bay from the prednisone... we have always used the luiqiud for this purpose, the rest use the capsules. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 My sickest two (the worst IEE and allergies) also had several sets of PE tubes. None of my kids were in the NICU, three did require neonatologists to ensure the meconium was out but apgars were high and problems were few in the beginning SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 > Anyone elses kids have recurrent ear infections requiring tubes? How about > sleep apnea? > had one right after another only after being on the Prednisone. He just got tubes July 27 due to the fact that every antibiotic they gave him made his diarrhea so severe. Does anyone else have problems giving their children antibiotics? Does any notice the suppressed immunity on Prednisone? picks up everything blowing in the wind. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 There are absolutely no people on either my hubbys or my side that have any allergies. Go figure! Dawn ---------- > From: SJHarlow@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: IgE reactions and other common denominators > Date: Sunday, August 09, 1998 8:39 AM > > From: SJHarlow@... > > Four of our five have elevated IgE and elevated peripheral (blood) > eosinophil counts. THey all had different food allergies. THe fifth > one did NOT have elevated IgE or eos (blood) but did have eos in the > esophagus. He is the only one NOT on prednisone yet. He is also the > one from my worst pregnancy. (I ended up on TPN from my own EE and > esophageal stricture). Actually our sickest two kids were the result of > my easiest two pregnancies so I dont think that is it. > > I bet we will find an allergic tendency in all our families that led to > this and we just got " lucky " to have this particular allergic phenomenon > in our kids. They are gene mapping my family and extended family and > scoping my brothers too (my father unfortunately died years ago after an > anti-reflux surgery -- before EG was even a known disease). to see if > there is a mappable link. > > SJHarlow@... > http://www.c4isr.com/harlow > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 In a message dated 98-08-08 22:57:32 EDT, you write: << Does anyone have children with IgG based allergies? Has anyone elses child been tested for this? AJ tested positive to 23 foods this way. It is supposedly not as accurate but how many of us had kids tested the accurate way and gotten a false positive or a false negative? >> At the last Food Allergy Network Conference in April in NJ, Dr. Wood (Director of Allergy at 's Hopkins, with whom Dr. Sampson worked before he went to Mt. Sinai last year), stated that IgG testing for food allergies is inconclusive at best, and RAST and IgE skin testing for FOOD allergies (not environmental allergies) are also less than accurate, and up to 50% of " positives " can be false positives. I've had my son test negative and positive for soy allergy (which we know he has) and he has tested positive for tomato yet he eats these without a problem. Also, I might add that they stated that food challenge would be the only way to disprove a " positive " (they do their food challenges in-house, not at home!) and that once an allergy is " outgrown " , the IgE testing can still remain positive for years. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 >> Anyone elses kids have recurrent ear infections requiring tubes? Bad ear infections but everytime we took Arissa off of all foods, they went away. >>How about sleep apnea? Arissa had apnea and was on the monitor for 5 months. She was a full term baby. >>Does anyone else have problems giving their children antibiotics? There isn't an antibiotic that Arissa has taken that she hasn't gotten a reaction too. But the senario goes like this-intro new food, ear infection, antibiotics, allergic reaction to antibiotic. reactions included swelling, hives, rashes, throwing up.....My doc hides when he sees us coming. Then we stopped trying to add foods and just increase the volume of the 4 she eats. Phyllis-mom to Arissa (12/22/95) EG, multiple food allergies, occasional asthma Remi 6, Spina Bifida, developmental delays, allergies-nuts, shellfish and latex Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 Spencer has never had an ear infection and never apnea monitar. Our family, both sides, are mostly allergy free (except maybe hay fever). No food allergies in our family either. My pregnancy was very rough as well. ---------- > From: SDidinsky@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: IgE reactions and other common denominators > Date: Sunday, August 09, 1998 9:47 AM > > > > In a message dated 98-08-09 09:39:07 EDT, you write: > > << > I bet we will find an allergic tendency in all our families that led to > this and we just got " lucky " to have this particular allergic phenomenon > in our kids. They are gene mapping my family and extended family and > scoping my brothers too (my father unfortunately died years ago after an > anti-reflux surgery -- before EG was even a known disease). to see if > there is a mappable link. >> > > : > > Interesting, I almost ended up with a central line when I was pregnant due to > be so sick. Luckily it was avoided. We have a very allergic family, me, my > brotehr, both my parents, barry, Jake (my older son - allergic to milk > protein, asthma and reformed reflux, 4 sets of ear tubes, tonsils and adenoids > out). ALso I have reflux (pretty severe buyt controlled usually by medicine). > ALl three of my kids had reflux, although only clayton has ended up with > severe problems. Jake is now healthy and can have some processed milk products > but one sip of milk gives him hives and makes him sick. He s also skinny for > five about 37 pounds and about 41-42 inches. Cole is the healthest with no > known food allergies - and he drinks whole milk, and eats everrything. > > All my kids have had problems with numerous ear infection, see Jake above and > COle also had tubes at 9onth. Clayton needed them, but with so much going on > we held off and since the spring he luckily has been ear infection free. > Anyone elses kids have recurrent ear infections requiring tubes? How about > sleep apnea? > > love, > sharon > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1998 Report Share Posted August 9, 1998 I would like to know as well about the suppressed immunity. I have been more relaxed lately about Spencer being around other kids. I hope this is not a bad decission. He just is feeling better and can't have him confined to his room. ---------- > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: IgE reactions and other common denominators > Date: Sunday, August 09, 1998 11:07 AM > > > > > > > Anyone elses kids have recurrent ear infections requiring tubes? How > about > > sleep apnea? > > > had one right after another only after being on the Prednisone. He > just got tubes July 27 due to the fact that every antibiotic they gave him > made his diarrhea so severe. Does anyone else have problems giving their > children antibiotics? Does any notice the suppressed immunity on > Prednisone? picks up everything blowing in the wind. > > Dawn > > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.