Ok, soooo, it's been a REALLY looong time...but it's been a really crazy time here at this "quiet little place" we call home! HA! We have had sickness upon sickness here! craziness! 3 ER visits since January! Absolutely ridiculous I tell ya. I honestly would have been better off had I been on here I think. I feel like I am losing my mind!! Insanity is not one of my most attractive traits!
Oh, where to begin. First, we are all finally on the mend. Kirsten was the toughest case as far as ER visits and such go. All are scary (obviously or we wouldn't have ended up there right?) but we had just gone to a TACA (talk about curing autism now) meeting on Saturday and got some great info on how to help Kirsten and Hannah...HUGE HELP!!! (if you need info or help on autism PLEASE go this site and contact these people! It's a life saver and I mean that literally! www.tacanow.org) So anyway, the next evening we were discussing our 3 main concerns that we wanted to address with Kirsten right away....
1) Sleep deprivation 2) her belly (it's always swollen and she has weird bowel activities)
3) Potty training
We notice at around 11:30pm that the side of her neck is the size of an egg, literally. So I take her to the ER to see what's going on, she can't sleep and this makes her apnea's worse. So upon getting there, I decide, slick mom, let's check the belly while we're here, so I add it to the symptoms...good thing I did. The first doc wrote her off as an "ear infection, throat infection causing swollen glands, and the stomach was possibly due to a touch of the flu"...thankfully the second dr said "my mom instinct says this is something else, do you mind if I x-ray her abdomen just to be safe?" I of course allowed it because I'm not convinced of anything yet. (now keep in mind, Kirsten is an autistic child with an extremely high pain threshold and she doesn't verbalize pain at all) the x-ray comes back and it shows her bowels are backed up so they give her antibiotics for l the "infections" and some medicine for her tummy.....she throws everything up including dinner form the night before undigested (sorry for the graphics ladies). Obviously, NOW we're looking for the problem a little more closely. They do a cat scan..... ok, so tell me how you would react if a doctor told you this after just being blown off as "just and ear infection, throat infection, and touch of the flu"...
"her liver is swollen, her spleen is swollen, she appears to have a small gall stone, her bowels are backed up to the colon and she has some free flowing fluid in her abdomen."
Let me help you out here...because this was how I reacted.... "What the...how did all this...OK what tests are you doing now? And where is the phone so I can tell my husband we're being admitted and get my kids some child care?" Basically, I was not leaving without answers!
Well, long and short of it, she had Mono! It can cause your liver to spike in enzymes causing swelling of both the liver and the spleen, and the swollen neck glands. She also has massive ear infection and is awaiting surgery to remove her tonsils, adenoids, and place tubes in her ears.
But through all of this we found out that she can not eat wheat or dairy!! So we have been on an new diet for a month now, and let me tell you..prior to trying it I would've never thought it would help, but OMG!!!! She is doing so well. She speaks clearer, her tantrums are less aggressive, she plays pretend with more than one object interacting them by herself (still no group play, but it's coming) and she is beginning to show signs of interest and understanding toilet training. Her concentration level has improved as well! It's amazing to me. We thought it was silly, till we let her eat pizza one time!! And saw major tantrum the next day, dark circles under her eyes, lack of concentration, more conflict....it's huge! (If you need more info on a GFCF diet got to the TACA website listed above! good free info!)
So sorry I've been gone so long, but now you know why!!! Life was happening, and in chaotic settings!!!
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2 comments:
Oh wow!!! What a change! I am going to pass on that info to a good friend of mine who's son is autistic and could use a little help.
Weird about poor Kirsten. I had no idea that could all happen with Mono. Henry was just in the hospital with severly impacted bowels too. Did they tell you to use a laxative daily? What do you do to prevent it from coming back? Henry has to take Miralax daily for the next year, its really really helped his belly.
We will have to get together soon. Park maybe?
ok, DON'T give him miralax daily....it's the same component found in antifreeze (the stuff in your car)> It helps for a little while, but what you could use, which is what we do....flaxseed (milled is best) Sam's club has it, huge container for 10-11 dollars. You mix it in oatmeal, applesauce, scrambled eggs, yogurt, etc. Kiki takes it once a day and she goes 1-3 times a day regular now! No starchy foods unless you give him lots of fruit in between through out he day..example, everyday for breakfast, the kids get a half a banana, lunch fruit cocktil cup, and snack time apples w/ peanut butter or applesauce... also, trader joes has a "just cherry juice", give him that 1-2 times a day (watered down) and LOTS of water...we bought a water jug (32 oz) at walmart for $1.50 and she has to drink all of it by the end of the day... seriously not as much as you think, but it helps! and we also had to do supositories for the first 2 weeks about every 3 days just to stimulate the bowels.
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