I dont know what to do.

Discussion in 'The Fire Hydrant' started by -bogart-, Jan 9, 2012.

  1. -bogart-

    -bogart- Member of WHODAT Nation.

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    Gah , as ya'll know Caleb spent the new year in PICU at Childrens Hospital here in new orleans.

    When we got to PICU the doctor asked me what kind of reaction Caleb has to Phenobarbital . I told him hes allergic and breaks out in a rash. He then told me that the ER gave him a dirivitive (sp) of Phenobarbital and they would watch him closely . I was not happy , but with him being on a breatung tube I did not really catch it being so bad.
    The next morning after they take the breathing tube out and he is finally sleeping fine and the neurologist that was on call to the er the night before comes and sees him. We are talking and she asks me what happens when Caleb has Dilantin. I told her he breaks out into a rash. She then asks If I told the ER docs that . I told her I did repeatedly as they seemed bumfuggled on what to do for him.
    She then proceeds to tell me that the ER gave him Dilantin. I was furious , but did not scream as what would that really help. I asked if the Dilantin could be why he had to have a breathing tube as he quit breathing. She told me no , but really what else would she say. It was on her orders she said because the ER did not tell her he was allergic to anything.

    Now i have gone over that night repeatedly in my head , and i am positive i told them what he was allergic to when we first came in . I dont know if he got 2 wrong meds , or if the first doc was trying to cover for the other one.
    I have an appointment with his regular neuro on the 31st , and i will ask her to explain all that was givin to him , I just dont know what to do the next time he has a seizure. this is the first time the er has ever made me doubt there quality , and i will bring him back to that er , but i just dont know what to do. Question everything and slow down the process of stopping his seizure? My mom said to sue , but really I have no desire to do that.

    Caleb broke out into a huge rash from head to toe , which is exactly what happened when we first discovered the allergy , so i am pretty confident the doc did not cause him to stop breathing , but that doubt is there.

    So basically , what to do besides be a pushy bitch next time. which i hate to do but WILL if i have to. I had a dog tag , but lost it and the doctors never look for a allergy tag anytime i have brought him in.

    AND cookies to all whom read this .
    I am at a lose and really furious with myself I let this happen. My poor itchy baby .
     
  2. Fran101

    Fran101 Resident fainting goat

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    Aww I'm so sorry! Those kinds of things are so frustrating

    My parents told the doctors some things 3589257 times. but yea, things get lost along the way from person to person.. and in the end, I have a necklace with the important stuff engraved on it as well as phone numbers and such.
    They NEVER forgot anything as serious as allergies to meds though, that is just AWFUL!
    The chart is there for a reason!! god forbid the reaction was more serious than a rash!

    I would go ahead and get a necklace/id card kind of thing.. and also INSIST that they write his allergies AGAIN on his chart or somewhere around his room

    Lots of feel better/less itchy vibes for Caleb! **VIBES**
     
  3. -bogart-

    -bogart- Member of WHODAT Nation.

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    Thanks Fran , i appreciate it . He is doing better. I am just so frustrated this time around . He is still not acting right and I guess i am just overreacting to it all. I am glad I have this place to vent to.

    I just feel so helpless. Anyone have any suggestion besides oatmeal bath for the itchies. he cant take anything orally and the calamine is not helping
     
  4. Beanie

    Beanie Clicker Cult Coordinator

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    I would say for sure you have to be "bitchy" next time... it has been my experience - and I'm not even that old - that if you aren't an advocate for yourself (or your kids) with doctors, nobody else will be. =/ I wouldn't even call it being bitchy personally... just doing what you have to do. I mean, Fran is right - thank God the reaction is a rash and not something even more severe.

    (((HUGS))) and don't beat yourself up over it, I know it's hard, but I don't know what you could have done. You told them he was allergic... you didn't know they were going to apparently not pass that along...


    etA: Can he do a Benadryl topical? don't know if that might help or not.
     
  5. Miakoda

    Miakoda New Member

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    What hospital was he at?
     
  6. -bogart-

    -bogart- Member of WHODAT Nation.

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    Childrens here in new orleans Miakoda. I mean it was NYE , But still . I will say this is the ONLY time i have ever felt uneasy there. The docs there have saved his life a couple times.
     
  7. Renee750il

    Renee750il Felurian

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    The topical benadryl is a good idea.

    What I do when I need to make sure someone has heard me -- and I know it's annoying but that's part of why it works so well -- is insist that they repeat back to me what I just said.

    I have myasthenia gravis. The types of pain medications or sedatives I can be given is very limited and yes, it IS maddening to try to get the doctors to listen. I'll never forget once when one wanted to give me a shot for pain and he didn't have one of the types that I knew were safe on hand. He called the neurologist I'd been seeing and came back so mad he was spitting nails. "My" neurologist had told him "try it and see what happens."

    So, YES, be as bitchy as you need to be! But it's not really being bitchy; it's being a good mother.

    ~~~~COOLNOITCHYVIBES~~~~~ for Caleb.
     
    Last edited: Jan 9, 2012
  8. eddieq

    eddieq Silence! I ban you! Staff Member

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    In the future, certainly be the pushy bitchy mom. Better that than they make a mistake - especially something that could possibly be life threatening.

    More anti itchy vibes for Caleb...
     
  9. Brunski

    Brunski New Member

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    Ugh, I'm sorry you had to deal with mindless doctors. I third the Topical benedryl- it's great for the itchies if he can use it. Poor guy.

    "Bitchy" mom has to come out sometimes. When I was younger, if my mom hadn't been "bitchy mom", I wouldn't be here today. Dr said they couldn't do the chest tube procedure at that hospital because of insurance reasons when I had a pneumothorax, and that I had a maximum of 10 more minutes before my heart stopped. Mom said "to hell you can't!" and mentioned sueing, as they were going to transport me 45 mins to another hospital. 45 mins when I have a max of 10 mins left to live? No way. She went nuts, and guess what? They did the procedure. LOL

    Sending some anti-itch vibes to the poor kid, and calming vibes to you.
     
  10. nancy2394

    nancy2394 New Member

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    don't be afraid to ask any doctor or nurse what they are giving your or your children BEFORE they give it. You have the right to know what they are putting into your body. An allergy is an allergy. Any allergy has the potential for causing a significant anaphalactic response. I'm glad he's starting to feel better. Sorry he's having to deal with a rash on top of feeling crappy with all he's gone through recently. Give him some big cyber (((((((hugs))))))))
     
  11. -bogart-

    -bogart- Member of WHODAT Nation.

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    Thanks nancy , I will. Chris and I was discussing this last night and I wonder if they weighed the risks against to reward and decided to go ahead anyway. Do they do that in the real world?

    Again thanks all for the good thoughts and words. I do appreciate them so much.
     
  12. nancy2394

    nancy2394 New Member

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    if it's a MILD reaction.... we leave it up to the patient, but we never give a medication to the patient if they have an allergy to it. There is almost always an alternative medication to give rather than risk the allergic reaction. What can be an innocent rash one time can be something so much worse the next time. I'm so surprised they gave dilantin to him after u said he had an allergy to it... there's a ton of different seizure meds on the market.
     
  13. -bogart-

    -bogart- Member of WHODAT Nation.

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    Thats what I thought , but with it being at an hour in , I dont know . No use now second guessing it , I just have to make sure in the future. He is also allergic to Phenobarbital and Topamax. It was literally chaos in there for a minute. I counted 14 people around his bed at one point. I just wish I knew if his breathing problems was a direct result. If not then that means his seizures have taken a new dangerous turn. I just am at alose. I hate seizures.
     
  14. nancy2394

    nancy2394 New Member

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    you'll probably never know the truth. It's hard to pay attention to everything when a crisis is going on. No sense in second guessing anything. He's okay, he made it through the seizure. Hopefully he won't have another one like that. The drug therapy will be important. They will have to routinely check his levels to assure he is in a therapeutic range. Seizures can be very manageable with the right care. Now stop worrying for a little while and go enjoy some time with him :)
     
  15. -bogart-

    -bogart- Member of WHODAT Nation.

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    Ow yes , he has had seizures for 9 years now. They have been very well controlled with only having break-thru ones when his body weight changed.

    He is on Keppra now , Down from the cocktail he was getting , but the reason I am so worried is he just had one a couple months ago and the doc upped his meds then , so we should have been good for at least a year , but no he had a bad one. I am just afraid that him starting puberty is effecting how his body process meds and he will have to be really drugged again. at one point my then 3 yr old was taking 15 pills a day. and you could see the look in his eyes that he was drugged.

    ahh sorry just rambling again . have a good day , i am going to try to put it out of my head for a bit.
     
  16. ~Tucker&Me~

    ~Tucker&Me~ and Spy.

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    ((((HUGS))))

    That is horrible that they mixed something like that up. Unfortunately you probably should be pushier next time. It doesn't even have to be bitchy, just really, really firm about being told exactly what they plan to do and give to him in terms of medications.
     
  17. nancy2394

    nancy2394 New Member

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    it's hard to put it out of your mind.... it's your son. It's a mother's nature to worry about their children. I feel bad that you have so many worries to deal with. Seizures can be scary..... they are so unpredictable. Even though they are often manageable... they can be difficult to manage. You sound like you do a great job with it, I'm sure it can get stressful at times. (((((((hugs))))))))
     

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