So Adi's teacher wrote me about him not having good coordination. I told her, well he's in insoles, maybe it's time to have them changed...I'll call back the podiatrist and see if she can get him in.
Adi's teacher said, well I've noticed it is not just in his walking... I dont think it's only a "walking" problem. He's constantly getting hurt, tripping, bumping into things, ect.
So anyways, I called the podiatrist today, and they said it doesn't sound like a walking problem to them...he needs to see a neurologist...which I have put off since day one...I dont want him to have to go through more testing!! But I dont have a choice :(
So poor fella has been to: Developmental Therapy Ocupational Therapy Physical Therapy Speech Therapy Behavioral Therapy He's been to an allergist had a skin test done He's been to a pediatric gastroenterologist where he had TONS and TONS of bloodwork done and a double scope and a sweat test He's been to an ENT in case it was something with his ears, nose or throat He had to have tubes put in He's been to an eye doctor to make sure his vision is okay
There's been so much more...but man...I can't even remember 1/2 of it!
Now poor guy has to go see a neurologist. I'm speechless I mean, I want them to find out what is going on...
but after all he's been through... so far he's only needed tubes! everything else has come back pretty normal.
He's had so much since birth! Continuing ear infections What they call "Toddler Diareah" He had a test for torticolli because of his arching.
He's had chicken pox He's had hands foot and mouth He's had an internal colon infection from all the antibiotics he's been on He's had some respitory issues He's got HSV1 (herpes simplex virus *COLD SORES IN AND AROUND HIS MOUTH AND DOWN HIS THROAT WHEN THEY GET BAD*) He's on medication for that that he's been on for 2 years...he's got to take 2 tsp of that everynight for the rest of his life.
He and Kendle both have been on zyrtech for the past 2 years...And come to find out from the allergist, Adi never needed to be on it!
I am just flustered! My mom says, wait til I get moved back to IN (if that's where we go) and take him up to Riley, Children's Hospital.
Sorry...had to vent a bit. It's just all so frustrating.
I mean we've not had it easy with him and his SUPPOSED issues since I got pregnant with him. Thinking I had the flu, finding out I was pregnant 2 weeks later...then finding out that I had a dumb dr who instead of checking me when I was cramping so bad I couldn't stand up straight, telling me I was just getting ready to miscarry...wait for the blood and it's be all over...Here's some more Tylenol 3's with codine to help alleviate the pain. I even went to our family physician there and he too told me I was miscarrying to wait for the blood and it'd be all over...No One checked me! I got so bad I was bent double, and took Kendle to a daycare I had never taken her too but to look at it...begged them to let her stay because I had to go drive myself to the ER...and I would have someone back to pick her up by the end of the day.
By the time I got to the ER, I was hurting so bad, I couldn't even breath without having sharp pains. They took their time getting me back, then told me that they thought I was having an eptopic pregnancy and sent me for an ultrasound...ONLY TO FIND OUT...BABY WAS FINE...I had a kidney infection they had let go to long....said if I would have waited much longer I could have become septic and it could have killed me and the baby.
Later when I did the multiple marker screening..they told me that he had an extremely high chance of having spinal bifida and told us to have an amneio and to terminate the pregnancy.
Lee and I looked at each other in shock, and then back at the dr and said, No. If he is born with Spinal Bifida, we'll deal with it...but we are not taking the risk of terminating a healthy baby.
At birth, he was delivered at 3am and they didn't actually clean him up until 10am. They wiped him a bit, but both he and I were still covered in blood...urgh His skin got these horrible white spots-and they weren't milk bumps...
I had to have an apesiotomy with him and they cut me clear back to my butt...and then...2 nurses took TURNS sewing me back up...took them 45 minutes, and 9 numbing shots...and I still felt it. The next weekend, I ended up with a kidney infection again, that they thought was apendicitis, and they had the surgeon come in and talk to me...I almost had my appendix removed because they wouldn't listen to me, even though I have had kidney infections, stones, and UTI's since 2nd grade. But no...I don't know what I am talking about.
With Kendle, my apesiotomy took 5 minutes to sew up and I was good to go in 2 weeks.
With Adi-6 months!
**Oh and when I went in the supposed appendicitis, they did an internal ultrasound, and I cried and screamed and she told me to calm down it didn't hurt...BS!! I mean, did the dumb nurse not listen when I told her I had just given birth the week prior and had a horrible experience with the apesiotomy??? She was pushing that huge as* thing down into my stiches...and she expected me to calm down?
Yeah I have had about all I can handle when it comes to dr's.
Adi's first visit to the enrichment center at the board of MR/DD (mental retardation/developmental disabilities) they told me: His hips were out of place One leg was shorter than the other His ribs were to high His stomach wasn't strong enough He had a hearing issue He had a vision issue He had to see a neurologist because something was wrong with his brain... To cut his hair, cause that was what was throwing him off balance....
I DID EVERYTHING-EXCEPT the neurologist, and not a darn thing was wrong that they said was wrong!
Another doctor, told me he had genu valum (sp?) which is a term used for knock knees. He reffered him to a podiatrist...who said his feet faced outwards...and so they did a cast of his feet and he's been in insoles since.
Do I have a right to be getting flustered with everything?? I am just so tired.
Wow girl, I don't know what to say. he has been through a ton and so have you. I would see the neurologist though. We had kayley seen about her hips as well and the orthopedic doctor told us that her hips were fine, but that she was weak on one side. We had her evaluated by physical therapist and they said it wasn't bad enough for therapy and that she will build up strength just by doing regular everyday activities. She is walking better, but she does fall down a lot still. They did tell me if I have more concerns then to contact them. That was a few months ago, so I am going to give her more time to build of the strength. With all that being said, I do think you should have him seen.
Thanks Angie I will have him seen. I just have to wait for his family dr to call back with who they want to send him too. He's still on an IEP at school and still qualifies for family resorces through the board of MR/DD.
I will do what it takes to find out whatever is wrong with him...and the more stuff I find out that isn't wrong...well that's one less step I have to take later in life with him.
At least right now he's young enough, I can still cuddle him and pick him up and move him when he doesn't want to go! lol
wow he has been through a lot....we live in Indiana and riley is a great hospital....skye was in there for about a week last november and we were treated great! and best of all they found out what was wrong with her! i would get him checked out and after that if they still cant find anything then that is good right? you could always make an appointment with riley and take a weekend to visit or something! good luck! sorry to hear about all the problems:( oh and skye has hand foot and mouth right now and that sucks big time:(
Cut his hair for balance?!?!?! I say if it sounds totally stupid...it probably is...lol.
I would definately take him to see a neurologist, especially because of the lack of feeling pain. If he has less feeling then is normal, that can easily throw off his balance and coordination for anything that he does. It's very uncommon, but he could have some form of neurapathy. Maybe even a very, very mild form of cerebral palsy? Who knows?
But, just from seeing him in all of the pictures, he looks perfectly normal in every way shape or form for his age. Running, playing, laughing...he's gorgeous just like his sister!
OH boy do I know how you feel! I wish you luck with all you have to go through in the future and hope that there will be an end to the most of it soon!
Well his dr called back and apparently SHE wants to see him before she refers him to a neurologist...which kinda ticks me off...because she always says that he'll grow out of it, or it's normal, or something...and then turns out more than half the time, it's not....or he is put on so many different antibiotics over a short period of time, that the poor baby gets an infection from the antibiotics.
All4Taylor-I agree...If it sounds stupid...it more than likely is! Urgh...people drive me nuts.
Oh and I said he qualifies for the family resources...well get this...everything we have requested to assist his weak areas...we have been DENIED because they are "age appropriate!" Including SAFETY equiptment-and the only reason we tried to get approved for that stuff, was because he already knew how to get the cheesy stuff from wal-mart open.
THANK GOD for LEE...Yesterday, Lee's mom was coming over to watch Adi (cause I THOUGHT he fell asleep watching cartoons on his bedroom floor) well I pulled the clothes in off the trampoline (which we are having to use as a clothesline, because our dryer broke and where we live sucks!) and then came inside and went to the restroom. I then walked back to check on Adi again, and he was GONE! I called his name 2x and then my MIL came to the front door, and says, he's out here with me...She said he was wondering in the front yard! Before even contacting my MIL, I called him 3 or 4 times to come on so we could go get Kendle...and he didn't answer...I looked in on him and he was layin on his stomach in his bedroom floor, eyes closed, thumb in mouth...sneaky little sucker!
So Lee came home and I told him to put a chain lock on the front door at the top...then he cant REACH IT!!! Even if he can unlock it...at least he can't reach it! lol
