Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Sandy, You are now faced with the " first " of many decisions you have to make for your child. You have done the correct step in asking us, this support group, for our experiences, but, ultimately, the final decision will be yours to make. For Max, we used Periactin (cyproheptadine) when he was 14 months old - the first time. He walked like a drunken sailor and we immediately stopped it. We did not see a dramatic increase in his eating, so it was not a big deal to us to stop it. But we tried it again when he was two and it worked like a dream. The key was to follow Dr. Harbison's method (that truthfully WE came up with and she fine-tuned it, but she will NEVER admit to that!!!) - give half the dose at night, before dinner, for a week or two, then 3/4 the dose, then the full dose and repeat the same with the morning dose one the evening dose is tolerated. By following that plan and taking about 6 weeks to get Max up to something that was worthwhile, he was eating better than ever before. What we did notice, however, was that after awhile, the medication did not work as well and we had to take a " drug holiday " for a couple of weeks. Each time, once we started him back up on it, it was faster to get him back up to the prescribed amount. Your job now is to do the research, consider your options and then make an educated decision. You will come to this again when and if you consider growth hormone therapy. Just look at all the points of view and then go for it. Stick to your guns and do what your gut tells you to do. You will know. There really is no right or wrong decision for your child. It is what you are the most comfortable with - and every single person on this list will support you no matter what you decide. I promise. But only you and your husband will have to look your child in the eye someday and tell him that you tried what you thought was best and you and he will have to have the confidence that you really did that. I hope you understand my point here. Weigh your options and go with your gut. Let us know what you decide to do! Jodi Cyproheptadine > In the past weeks I was finally able to obtain the report and > recommendations of 's (first)visit with his endo (in > September!). Currently as his height/weight ratio is poor, and his > linear growth rate is not falling (he is sticking at the 5%tile) the > doctor feels he is not a good candidate for GHT. > > I asked about putting him on Periactin (cyproheptadine) to try and > get his weight up (seeing that so many of the children here seem to > have good results with it.) > > Here is his response: " Cyproheptadine has not been tested in double- > blind studies for its effect on weight gain and possible side effects > in children with -Silver syndrome. Basing medical treatment > on anecdotal reports may be risky. If nationwide double blind well- > designed studies become available, I strongly encourage you to > participate. " > > What do you all think of that, and what have your endos told you? > What confuses me, is that after several months, Dr. H. has responded > to my request to review 's information. She made several > recommendations in terms of feeding techniques and calorie boosting. > If after three months, did not have good weight gain, she > said she might recommend Cyproheptadine. I should add that over the > last 6 months or so, has been gaining weight, but he is still > below the 3%ile. > > Now, one Dr. is saying it isn't a good idea, and another thinks it > may be. I was just curious as to what information you may have all > been given regarding this. > > Sandy - mom to , 19 mos -- 18lbs and 30 " at his last weigh in > two months ago. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 In a message dated 1/9/01 10:28:06 AM Eastern Standard Time, kkm@... writes: << cyproheptadine. This is a common antihistamine used for treating allergies, hayfever etc. It is my understanding that all antihistamine produce a hunger affect. Cyproheptadine has a bigger affect because of the way it was formulated. It is also my understanding that all antihistamines make you drowsy but over time one can adjust to this. >> Hi, A question to any parents out there.......has anyone tried this Cyproheptadine themselves or am I the only nutty one???? I figured there is " nothing " really wrong with my daughter (we were just hoping for the side effect of increased hunger) and she was to be put on it, so why not try it myself. Just curious? (Mom to - 35 mos, 18lbs, 32in) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Hi , Since it is a perscription drug I wouldn't recommend trying it unless you get approval from a doctor. I know what over the counter antihistamines do, so I figure that in perscription strength it is just stronger. Ken M Lequiz@... on 01/10/2001 04:20:16 PM Please respond to RSS-Supportegroups To: RSS-Supportegroups cc: Subject: Re: Cyproheptadine In a message dated 1/9/01 10:28:06 AM Eastern Standard Time, kkm@... writes: << cyproheptadine. This is a common antihistamine used for treating allergies, hayfever etc. It is my understanding that all antihistamine produce a hunger affect. Cyproheptadine has a bigger affect because of the way it was formulated. It is also my understanding that all antihistamines make you drowsy but over time one can adjust to this. >> Hi, A question to any parents out there.......has anyone tried this Cyproheptadine themselves or am I the only nutty one???? I figured there is " nothing " really wrong with my daughter (we were just hoping for the side effect of increased hunger) and she was to be put on it, so why not try it myself. Just curious? (Mom to - 35 mos, 18lbs, 32in) 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.