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Please help pics included *warning graphic description included* *UPDATE IN RED **

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.....

by on Jan. 3, 2014 at 7:50 PM
Replies (11-20):
bmw29
by Buttcrackncornchips on Jan. 3, 2014 at 10:13 PM
Ds doesn't have seizures but he has diarrhea all the time. He's had tons of testing done and it took forever to get answers so I understand what you're going through. It can be very frustrating and scary.

Quoting mommabear5cubs:

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 


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.


Lottie925
by Silver Member on Jan. 3, 2014 at 10:27 PM
Wishing love, amazing medical care and answers for your little guy!
Andrea0412us
by Member on Jan. 3, 2014 at 10:27 PM
I hate that this is going to sound conceited lol, but have you thought about Arkansas Children's Hospital? We have AMAZING drs from not only around the country, but also from around the world. They are very caring and loving and will do everything in their power to find an answer. They perform miracles on a routine basis lol. I'll be praying for your son too. I wish both of you the best of luck. Just thought of this also, my oldest also has ADHD and we have to take her in to see the dr every 6 months in order to make sure she is maintaining/gaining weight. They don't want to see her losing weight while on her medication. Maybe his meds could be an issue.
mommabear5cubs
by on Jan. 3, 2014 at 10:47 PM

he just started meds over thanksgiving and even had them swtched to see if they helped him... No change Arkansas is pretty good haul away from me I am in Eastern KY and 25 weeks preggo cant really travel too vry far at the moment 


Quoting Andrea0412us: I hate that this is going to sound conceited lol, but have you thought about Arkansas Children's Hospital? We have AMAZING drs from not only around the country, but also from around the world. They are very caring and loving and will do everything in their power to find an answer. They perform miracles on a routine basis lol. I'll be praying for your son too. I wish both of you the best of luck. Just thought of this also, my oldest also has ADHD and we have to take her in to see the dr every 6 months in order to make sure she is maintaining/gaining weight. They don't want to see her losing weight while on her medication. Maybe his meds could be an issue.


NDADanceMom
by on Jan. 3, 2014 at 11:00 PM
2 moms liked this

She said "if you believe"  as in "I understand not everyone does, but its what gives me comfort."

You said "being in the sky"  as in "im going to belittle your faith because I look down upon your silly faith."

Who is more offensive?  Im guessing you will never really understand the real answer. 

Quoting gabbyttcgirl: 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


Diana_B.
by on Jan. 3, 2014 at 11:48 PM
1 mom liked this
Your not the OP so don't take offense. She offered her advice whether or not you liked it is irrelevant. If OP doesn't like it she can move to next advice. Keep in mind all walks of life are in these groups which includes a wide range of advice and opinions and therefore if we aren't prepared to hear it all I wouldn't ask. That being said I also wonder if maybe the child is very sensitive to stress as well and possibly stress being a trigger?

Quoting gabbyttcgirl: 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
by on Jan. 6, 2014 at 8:34 PM

BUMP!

mommabear5cubs
by on Jan. 6, 2014 at 8:35 PM

BUMP!

valkay
by Silver Member on Jan. 6, 2014 at 10:16 PM
How about asking for a brain infectious diease. Dr. One might be able to give u an answer about the seizures ...
masesmom
by Silver Member on Jan. 6, 2014 at 10:27 PM

So sorry you are going through this. Here's a bump and prayers for answers soon!

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