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  • Son With Addisons- Very Nauseous

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    Old 05-03-2008, 03:30 PM   #1
    Pam44
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    Son With Addisons- Very Nauseous

    My son was diagnosed with Addison's. His endo is still waiting on tests to see why he is not producing cortisol.I've had to take him to the ER room for fluids twice because he couldn't keep down the cortef. He is very nauseous all the time and throws up a lot and has migrains. The headaches and nausea were getting better when the endo upped his cortef dosage then she said the next day to cut it back down to half and the nausea started so today I'm giving the double dose and calling her on Monday.

    She started him out on cortef 7.5 mg 3X a day and 5 mg at bedtime and that dosage wasn't stopping the nausea or headaches. When a person is first dignosed with Addiso's shouldn't what is the normal starting dose? His primary care doctor thought the endo didn't have him on enough cortef to start with. He's lost 14 pounds in 2 weeks and has been in bed for 2 months.

    He is having a pituatary scan done next week and she is waiting on more test results. The endo is 2 hours and away and we only have 1 pediatric endo in our town. The hospital I took him too 3 days ago wouldn't admit him even though I asked them to because I was afraid he couldn't keep the cortef down when we got home.

    He is not on florinef now. His electroytes are normal and his blood pressure has been very high on cortef. It was very low and he was first diagnosed with vasovagal syncope by a cardiologist 4 weeks ago. In the past when he's taken prednisone his BP always goes way high also.

    I appreciate any suggestions or what I can do to stop the nausea. Is that an indication that he needs more cortef?
    Pam

    Last edited by Pam44; 05-04-2008 at 05:20 AM. Reason: post too long- shorten

     
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    Old 05-03-2008, 04:25 PM   #2
    kmatthew
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    Re: Son With Addisons- Very Nauseous

    Hopefully someone with more experience will jump in and help. How old is your son?
    I was started on 20 mg of cortef and it did not work for me for long because I needed more. I was not nausous. I do think that cortef does that to some people. Maybe you should try the generic called Hydrocortizone. I have read on this board before that many people do better on that. If he has confirmed addisons I am surprised that they have not added the florinef already. It really does help.
    If I were you, I would call the doctor on call and let them know what is going on. You do not want him to go into an addison's crisis. I will keep your family in my prayers. Also keep an eye on the blood pressure. A side effect of cortef is elevated blood pressure, as it is a steriod.
    It did not do that to me. It put me from a very LOW range back into the 90's and 100's.

    Last edited by kmatthew; 05-03-2008 at 04:27 PM.

     
    Old 05-03-2008, 04:35 PM   #3
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    Re: Son With Addisons- Very Nauseous

    His doctor said we could give him up to 4 times the regular dose if needed. I don't think the nausea is caused from the cortef. He was already very nauseous before being being diagnosed and lost several pounds before starting cortef. His GP said Addison's is causing the nausea. He is prescribing anti nausea medications but none of them are helping.

     
    Old 05-03-2008, 07:37 PM   #4
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    Re: Son With Addisons- Very Nauseous

    When I was diagnosed, I was throwing up all the time and had lost 30 pounds. My initial dose of Cortef was 60mg. I stayed on that for several weeks and then slowly weaned down to 30 (I am on 17.5 now). The doctor should up the Cortef now as your son is obviously having an Addison's crisis. He could be dead if everyone waits for all the tests to come in! I was started on the 60mg Cortef right away. When I was stable, they did the pituitary scan. The bottom line was that I had panhypopituitarism, but no tumors. Make sure they check your son's thyroid and growth hormone levels as well. The important thing now is to get him stabilized and stop the vomiting. If your endo won't listen to you, find one who will. (Obviously, I'm not a doctor. This is just my opinion.)

     
    Old 05-03-2008, 07:38 PM   #5
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    Re: Son With Addisons- Very Nauseous

    You just have to make the Dr. listen that the nausousness is not going away, and that you are concerned about this situation. Addison crisis can be life threatening. Hopefully your son will feel better soon. If you add more cortef, it could elevate the blood pressure more. I would let the doctor know what the levels are for the blood pressure before increasing meds. If you get no results, from this doctor, you may have to begin that hard search for another one. When is the last time that you let him know your son was not doing well.
    I think sometimes that they think if they dont hear from you all is well, and they don't realize how long or how intense the suffering has been. Just keep calling.

     
    Old 05-04-2008, 06:06 AM   #6
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    Re: Son With Addisons- Very Nauseous

    I have great news! He woke up feeling great this morning. I think getting extra cortef yesterday helped.

    We have a very good local doctor who knows about Addison's, although he is not an endo. He was highly recommended to us. We've been seeing him almost everyday for the past 4 -5 days for the nausea and throwing up. He said my son wasn't on enough cortef. His BP has been running 135/98 since starting cortef. His GP said not to worry about that for now. His endo said cortef shouldn't raise his BP but he GP said it could. He has taken predisone in the past for migraines and it had the same effect on his BP then but also caused a lot of anxiety so he couldn't take it very well.

    His endo was out of the office last Thurs and Fri. I talked to her on Wed and she said to double the cortef. That seemed to help the nausea so she said go back down to 27mg and then he started throwing up again.

    Is there an injectable form of cortef? His endo didn't say anything about emergency cortif.

    My son is 14 now. He has been sick since he was only 6 years old. He has had Addison's symtpoms and low blood pressure with daily migraines, nausea and fatigue. He has been home schooled because of his health. I've requested the Addison's testing before and his doctor at the time, did 24 hour urine cortisol test. That came back normal when he was 9 so I didn't question Addison's anymore after that.

    Then my mother had a positive ACTH just 4 months ago. She was very sick and hospitalized weighing only 73 pounds. She has been going to doctors for 2years trying to find out what was wrong and getting weaker. She hasn't been able to get out of bed much for 2 years. She went into a crisis 2 years ago when my father passed away and I thought she wasn't going to make it. She also had extreme nausea and vomiting. She is not much better now because she refused to take the full dose cortef, but her nausea is better on the very low dose of cortef. She takes a very small dose of cortef because she said it hurts her stomach even though they have her on Nexium for that. She has IBS and past ulcers.

    Can Addison's be heritary? I read that it rarely is in only 2% of the cases. I read people with that form do not produce adrenal antibodies. Do you know of test they do to see if it is inherited or not. My mother tested neg for antibodies but we don't have all the results on my son yet.

     
    Old 05-04-2008, 08:47 AM   #7
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    Re: Son With Addisons- Very Nauseous

    If he has the auto-immune form, well, auto-immune diseases tend to run in families. Even though they say stuff does not, they just are not studying it so much as they say these diseases are not that prevelent and unlike some of the other diseases that have marathons and ribbons etc. we do not get a lot of funding or have celebrity backing.

    Your son very much needs an emergency kit and an emergency injection and you need to know how to give it to him. There are addison's disease handbooks on the net and instructions all over with suggestions and you NEED to have this. I have 4 kits all over. I do not want to die. You need to know the signs of an adrenal crisis and when to act and how to stress dose him. His doctor needs to regularly give him extra steroids in every script so he has plenty in case he needs to take extra.

    He needs a letter from his doctor in this kit telling EMT and ER doctors how to treat him and when he was diagnosed - mine says I have no adrenals and to give me 100mg solu-cortef or solu-medrol, anti-emetics, fluids, antibiotics if needed, pain meds, ativan until I am stable. It tells them that this is life threatening and if not treated, I will die.

    Does he have a medic alert bracelet or something similar in case he is passed out and cannot speak?

    I carry with me anti-emitics, salt tablets (they can help stave off problems - as addison's is a salt wasting disease), extra cortef, my emergency kit, my medic alert info, instructions on how to give a shot, my list of medications.

    Even if they are negative for antibodies - still, they need to treat this as an important issue.

     
    Old 05-04-2008, 01:44 PM   #8
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    Re: Son With Addisons- Very Nauseous

    I will ask his doctor about an emergency kit. They still haven't given my mother a kit and she has been diagnosed for 4 months. I need to ask her doctor for a kit as well. I told my older son he needs to get tested for it before he has back surgery this summer in case this is inherited. I read that in one family all 3 siblings tested postivie for Addison's.

     
    Old 05-05-2008, 03:05 PM   #9
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    Re: Son With Addisons- Very Nauseous

    Your doctor will just give you the script for solu cortef and solu medrol (get in accuvial form so you only have one vial) and the proper size needle for an intra-muscular injection. It is up to you to find a proper way to carry it and gather instructions, alcohol pads etc, that you need.
    I have in mine - instructions on how to give an injection, cortef pills and anti-emitic pills (in a pill holder), list of meds and operations and allergies, a few alchohol pads... I keep mine in a zip pencil pouch but I have friend that use larrge eyeglass holders - the stiffer the better (you don't want the ampoule to break) and you need to label it so people know what it is. Also you need to keep it in a place where is is not too hot - a car is not a good place as heat will degrade the meds.

     
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