Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 Aloha Teja, I too am so very thankful to have found this site. I'm in Hawaii and am still trying to get to a Dr who is familiar with . We have broken out of the Kaiser HMO and have an appt with a Ped Rumatoligist on Mon, but I have already confirmed this Dr has never seen a kid with . We hope to see a Dr this July while on the mainland, but we have to follow the right protocol... That is why after 7+ years of in our lives I've come up with this home remedy list. I'm not a Dr, but our Pediatritian knows of these treatments & has okayed all of them. We don't take any daily meds, and we have taken the Prednisone at least monthly since Nov 08. *Equate (Fomotidine) as an acid controller used when needed. *Mylanta 2-3 tablespoons of Mylanta for stomach, and also helps with the mouth & throat sores. She started on Mylanta at about 2 yrs old & big help. *Motrin orange flavored chewables every 4 hours at the maximum dose for her weight (ask your Dr for the table, it is slightly more than on the package) alternating with Tylenol every 4 hours intermittedly- she also hated/gaged the syrup, but liked the chewables. We rarely need Motrin now since the 1 dose of Prednisone works great for her. *Orajel on her finger and she puts it right on her sores in her mouth before she eats- it makes the pain stop long enough to get the food in. *Tylenol suppositories for when her fever would spike in the night & she would vomit any Motrin. I'd give a suppository then wait about 1/2 hour, then give the Motrin and most times then the Motrin would stick. (I asked my Dr about the Motrin Supositiories and she said she wouldn't perscribe them due to the risk of ulsers in her large intesting from the Motrin, she said it could have the same effect as it does in the stomach which is why it isn't widely perscribed- I'm still looking into this). *Damp washcloth over eyes during a headache. *Warm bath for bodyaches *Gerber Rice Cereal- she still eats it a 8 yrs old as it is gentle on her stomach. I'm so thankful to have found this site. It has been a long, lonely battle, and I am just amazed how many kids are out there with the same suffering. We will probably get her a T & A soon, just waiting for a Dr who can oversee her care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2009 Report Share Posted April 18, 2009 Aloha Teja, I too am so very thankful to have found this site. I'm in Hawaii and am still trying to get to a Dr who is familiar with . We have broken out of the Kaiser HMO and have an appt with a Ped Rumatoligist on Mon, but I have already confirmed this Dr has never seen a kid with . We hope to see a Dr this July while on the mainland, but we have to follow the right protocol... That is why after 7+ years of in our lives I've come up with this home remedy list. I'm not a Dr, but our Pediatritian knows of these treatments & has okayed all of them. We don't take any daily meds, and we have taken the Prednisone at least monthly since Nov 08. *Equate (Fomotidine) as an acid controller used when needed. *Mylanta 2-3 tablespoons of Mylanta for stomach, and also helps with the mouth & throat sores. She started on Mylanta at about 2 yrs old & big help. *Motrin orange flavored chewables every 4 hours at the maximum dose for her weight (ask your Dr for the table, it is slightly more than on the package) alternating with Tylenol every 4 hours intermittedly- she also hated/gaged the syrup, but liked the chewables. We rarely need Motrin now since the 1 dose of Prednisone works great for her. *Orajel on her finger and she puts it right on her sores in her mouth before she eats- it makes the pain stop long enough to get the food in. *Tylenol suppositories for when her fever would spike in the night & she would vomit any Motrin. I'd give a suppository then wait about 1/2 hour, then give the Motrin and most times then the Motrin would stick. (I asked my Dr about the Motrin Supositiories and she said she wouldn't perscribe them due to the risk of ulsers in her large intesting from the Motrin, she said it could have the same effect as it does in the stomach which is why it isn't widely perscribed- I'm still looking into this). *Damp washcloth over eyes during a headache. *Warm bath for bodyaches *Gerber Rice Cereal- she still eats it a 8 yrs old as it is gentle on her stomach. I'm so thankful to have found this site. It has been a long, lonely battle, and I am just amazed how many kids are out there with the same suffering. We will probably get her a T & A soon, just waiting for a Dr who can oversee her care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 hi--this is a question for sail1313--(I appoligize that I don't know your name ) You had said you give your daughter famotide as needed-- When do you give it to her? Is it for severe stomach pains???? If so, when do you give it to her? during? before? Does she complain of acid problems? My son is only 3.5, and isn't able to explain what his stomach pain feels like, he gets terrible stomach pains, and I would love to find something that could control these. And also to understand what the pain is from-- I was under the impression , that the stomach pain is inflammation related. Thank you! Debbie Quote Link to comment Share on other sites More sharing options...
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