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Life has been hell...

ToastieSimonsToastieSimons member
in Special Needs

In the past 4 weeks since DS2 was born.

DS1 has had FOUR, yes you read that right four, fevers.  He is screaming all day, shaking his head, slamming it into the floor, refusing to eat, screaming while taking his bottle and waking all times screaming inconsolably through the night.

We have taken him to the pedi twice now and they keep saying nothing is wrong.  I'm taking him again at 3 today and demanding we come up with a plan.  

He has lost so much weight again.  A family friend sent us a gift for DS2, a 9 month sized polo and shorts outfit (not sure why they would send 9 months sized) and it fit my 2 year old DS perfectly.  All his 12 and 18 month sized clothing is falling off him again. His bathing suit is falling off in the pool  

DS2 screams all day and night.  I finally figured out he has an intolerance to the goodstart gentle.  He was throwing it up out his nose so we started thickening it.  Despite 1TBSP/oz of rice cereal it was still coming out his nose.  So we switched to similac advance and he's only refluxing silently.  But as I said, he screams all day and night (I'm fighting for meds tomorrow at his 1 mo well visit). DS1 hates the loud high pitch scream DS2 has so he starts screaming.

I feel like I'm going to implode. 

To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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Re: Life has been hell...

  • MummyGruetzieMummyGruetzie member

    I want to reach through the computer screen and give you a huge hug. So sorry to hear that its been so hard. And especially that nobody has been able to help you figure out what's going on. DDs c-diff was written off as standard diarrhea for the first several weeks of non-stop changing diarrhea diapers and a bleeding rectum. I was so so frustrated that I finally demanded they test for it. When it came back positive, I was almost happy to hear that something was wrong. I hate being told its all okay when really they don't have the answers. Hopefully between the two boys' appts in the next two days you'll get some answer to help at least one part of all of this turn around. Is there any family, friend, or therapist around that can help with one (or both) of the boys so you can at least get a break for a few minutes and maybe even a nap? Or could DH maybe take them out in the car for an hour and give you a chance to rest? You've got to be exhausted! ... Thinking of you and hoping it starts to get a bit easier soon!  

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  • april262011april262011
    That sounds so tough.  With four fevers in as many weeks, it sounds like something is definitely up.  Have they taken urine, blood samples/cultures?  Something as simple as a UTI can cause fevers and a lot of discomfort.  How frustrating that they keep saying nothing is wrong.  Even if it is nothing physical, but instead the result of the stress of life changes, they need to do something for him.  I hope that you are able to come up with a plan at the pedi today.  And, I hope you are able to get DS2s reflux under control.  Recovering from birth is hard enough on its own.  hugs.  
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  • JustinloveJustinlove member
    I hope things get easier soon.  Sorry both boys are struggling so much!
    My Craft Blog: Sew Girly Studio
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  • lite-brightlite-bright member

    I'm so, so sorry things are so rough right now. 

    I hope the doctor appointments lead to plans and solutions for the boys, and that you can get a break. Thinking of you! 

    image

    DD1, 1/5/2008 ~~~ DD2, 3/17/2010
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  • Florak8Florak8
    I am praying for you and the boys. This too shall pass, but I am so sorry it is so awful right now.
    .
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  • realisticdreamsrealisticdreams member

    I have no advice except it will hopefully get easier.  But, nothing is easy about 2 sick kids.  I hope the pedi listens to you tomorrow, and that you are able to get a gameplan in place.

    Hugs and GL. 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • MaxandRubyMaxandRuby member
    I can hear the exhaustion in your voice. I hope they listen to you and can come up with a plan. Thinking and praying for you guys!
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  • JcrabJcrab
    Hugs! I am so sorry that you are having such a hard time with both your boys. I really hope the fevers stop and the reflux / feeding issues improve ASAP. You are seriously due a break and I hope you get it soon. Vent here anytime. 
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  • OlivesTOlivesT

    Thinking of you and prayers too!  I don't know the history on your little one but has he been evaluated for feeding issues?  It's not supposed to be that difficult.  There are tons of kids in feeding therapy, maybe yor little one already is in it, but I just wanted to mention in case.

     Sorry, I don't know about the fevers, other than consult a different Dr. If you can.

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