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mommabear5cubs
Please help pics included *warning graphic description included* *UPDATE IN RED **
January 3 at 7:50 PM

Sorry it has taken so lon to get back to you ladies but Jaxson has not been doing too well.... He still refuses to eat and has drank about a total of 4oz today... At his checkup he weighed 36lbs today and was very lathargic. He was placed in an abulance and taken out of state to another hospital... The said they are unlikely to have answers to his problems but are treating him for dehydration and will do what they can to get him in with a specialist in regards to his tummy and neurological issues after they release him pending him perking up... So still no answers or explanations :( It is like no one but me and his daddy cares :( 




when my son was a baby he constantly battled tummy troubles constipation/projectile vomiting/severe diarhea this has plagued him his whole life (he is 5 now 6 in June) no one has ever figured out what is going on with him he has littereally been to 5 different hospitals and seen multiple specialists and been tested for everything from ciliac to food allergies and no results to date. At 22 months old he had is first seizure. He has them randomly still. He also began having episodes of swelling and rashes that were diagnosed as an autioimmune disease and thyroid condition. He cant seem to keep on weight (at 5 years old weighing in at 37lbs). He has Adhd. He has been complaing about belly pain for the past 8 weeks at least, seen numerous drs and still no diagnosis.He has started refusing to eat and drink or eating very little (about 1/8 normal) After thinking thing were looking up (SEIZURE FREE 6 MONTHS) he had his worst seizure to date which warranted a trip to the er last night. Thius was different then his normal seizures and took us a long time to get him recovered from. He had gotten in trouble for misbehaving. His little body froze and became arched. His arms and legs though completely stiff were slightly twitching. He turned blue. He stopped breathing for 3 minutes. His pupils were fixed and dialated for 4 minutes while he seized. Roled back pointed to the right. He wet himself. After the seizure.. He broke out in a rash all over, that resolved on its own... His pupils rapidly dialated and undialated for several minutes on their own. He was confused/disoriented for at least 15 minutes. He could not control his emotions. He went back to what he was doing preseizure after 'snapping out of it" He has seen multiple neurologist and has one that finally 2 years ago started him Keppra. But we have no clue why he has these problems of why he has the seizures or why any of this is happening or how to help our baby.... Please anyone have any answers or suggestions Here we are after gighting for nearly 6 years and no closer to and answer.. If nothign please copy and paste into other grooups or bump to help me help him.. pics of the rash.....

Replies

  • LeKendria
    January 3 at 8:12 PM
    If you cant find help anywhere maybe you should pray for your son and ask jesus or healing. If you believe.
    Its weird that he resumed his activity after a seizure normally that doesnt happen. Then, the fact that he was being disciplined when it happened do you think maybe there is nothing wrong but having reactions to stressful situations is causing this? Stress can kill you. I stressed out so bad once i ended up in the hospital with severe pains and vomiting and they tested me and tested me never found a thing. I hope you all get the help you need
  • gabbyttcgirl
    January 3 at 8:22 PM
    I'm sorry but if I was op I would take GREAT offense to this.

    Some people don't believe in a being in the sky. Even if she did to imply that she never has prayed if she IS a believer then that's like saying God won't answer her prayers after 6 YEARS of pain for her son.



    Quoting LeKendria: If you cant find help anywhere maybe you should pray for your son and ask jesus or healing. If you believe.

    Its weird that he resumed his activity after a seizure normally that doesnt happen. Then, the fact that he was being disciplined when it happened do you think maybe there is nothing wrong but having reactions to stressful situations is causing this? Stress can kill you. I stressed out so bad once i ended up in the hospital with severe pains and vomiting and they tested me and tested me never found a thing. I hope you all get the help you need
  • mommabear5cubs
    January 3 at 8:32 PM

    I pray for my sone ALWAYS as I do believe. when I said he resumed normal activity I meant that he was sort or frozen in time he went right back to where he was before the seizure mentally. We have tried to eliminate as much stress as possible but he still needs boundaries and needs dicipline. We have litterally done everything humanly for him we know to do :( But his problems cannot be stress because he has had some of them since he was a newborn. With every year a new symptom or issue.. 


    Quoting LeKendria: If you cant find help anywhere maybe you should pray for your son and ask jesus or healing. If you believe.
    Its weird that he resumed his activity after a seizure normally that doesnt happen. Then, the fact that he was being disciplined when it happened do you think maybe there is nothing wrong but having reactions to stressful situations is causing this? Stress can kill you. I stressed out so bad once i ended up in the hospital with severe pains and vomiting and they tested me and tested me never found a thing. I hope you all get the help you need


  • mommabear5cubs
    January 3 at 9:24 PM

    BUMP!

  • seaturtle1
    January 3 at 9:32 PM

    I am so sorry you have to go through this.  I am very sick like your son to. To many illnesses to name.  But I can not seem to ever get better no matter what we do.  I was wondering if you have ever tried a natural doctor.  They see outside the box unlike a regular doctor.  Be careful as some practice channelling energy.  Ask them if they do this and if so stay away.  Just find a good natural doctor in your area that uses plants as medicine.  They find things doctors can not.  The only thing is they are not covered by insurance.  Look because some have sliding scale pay.  Even if nothing came back on his allergies.  I would do not wheat or dairy at all.  You would be amazed at what this can do to heal the body.  But it will not happen over night,  I will keep him in my prayers just know I feel your pain in a very real way.

  • MissDucre
    January 3 at 9:39 PM
    I'm sorry you and your baby are going thru this and I pray everything gets better for you. Here's a bump for you
  • Lottie925
    January 3 at 9:44 PM
    When you say 5 hospitals? Are you near a major metropolitan area with a top of the line Childrens hospital? Time to get to the bottom of this. Not that you haven't! But do not take "we don't know " for an answer. Travel if needed.
  • bmw29
    by bmw29
    January 3 at 9:49 PM
    Has he had scopes (upper and lower) for the stomach issues? WEBsite for the seizures? Have they ruled out Chroma and IBS? Have they tested for all of the autoimmune disorders possible? I hope you get some answers soon.
  • mommabear5cubs
    January 3 at 10:08 PM

    we went to three childrens hospitals one in each WV, OH, and KY and the others were local hospitals.. 

    and when we dont get an IDK we get a bs excuse his seizure is because he has strep (when there is no fever present or anything else) or it is a stomach virus or it is this or that when we know they are just blowing smoke) 


    Quoting Lottie925: When you say 5 hospitals? Are you near a major metropolitan area with a top of the line Childrens hospital? Time to get to the bottom of this. Not that you haven't! But do not take "we don't know " for an answer. Travel if needed.


  • mommabear5cubs
    January 3 at 10:10 PM

    He goes monday to the ped and I am gonna ask tons of q's and demand some answers because this has gone on long enough too long in fact  and I was just talkig my husband about the having a full GI series done on him..


    Quoting bmw29: Has he had scopes (upper and lower) for the stomach issues? WEBsite for the seizures? Have they ruled out Chroma and IBS? Have they tested for all of the autoimmune disorders possible? I hope you get some answers soon.


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