what tests are they for a child with development delay?

[deleted account] ( 8 moms have responded )

hello! i have a 2 and a half yr old boy who has had alot going on in his life. He was born with a TOF, Oesophaeal atresia and duodenial atresia. hes had his fair share of operations. Jack doesnt eat, walk or talk. Im seem to be getting frustrated with drs who dont seem to know what to do with him. Theres been questions of an MRI as he has had meningitis at 6 months. he has plenty of physio and speech therapy but everybody seems stumped on why hes not doing anything but no one wants to suggest tests. does anyone else have similar problems and could anyone suggest tests that i could put to the drs?

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Kim - posted on 01/22/2010

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Hello Nickki,
My grandson had a duodenial atresia also when he was 15 hours old, and he had complications with eating also, but he also has Down syndrome so textures are all to do w/ it too. But we just slowly tried new foods we had a swallow study done and showed he was a throat packer. So after each couple bites we would do a drink to wash food out of his throat. He had problems w/ weight gain due to the problems w/ eating so his doctor put him on pedisure they have all flavors and he statred gaining weight and then we statred putting thickener in his drinks and food after off of pedisure and he has just learned to eat and does fine now he is 2 1/2 years old it as just been time and error with him....... I wish you the best of luck. Kim

Jean - posted on 01/17/2010

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Every child is as different as snowflakes epsecially when it comes to disabilities. The common thread is the willingness of some docs to walk away from children who do not fall into neat little categories and just say we don't know so we cannot help you- good luck. That's when you learn what you are made of. My sweet one is now almost 19. She is the anchor that holds me in a stormy sea. Docs called her a burden that would be unbearable in time. She is thechild that I rock to sleep every night. She is the one who does not talk but never talks back. Insist on MRI's EEG's as baselines every year. Compare them. Take careful notes and watch for changes. Only you will see them. I fyou do not get the results- change docs. Some are just not willing to deal with your child. And remember- It is worth it.

Sheryl - posted on 01/16/2010

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i would also look into a program called early intervetion. every county has one! they do test and they'll till you if they can help with what ever it is that your son needs. my sons have gotten help with speech. know my oldest is talking like carzy! hope that help some!

Catherine - posted on 01/15/2010

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Hello!

With child #4.

At age 3 yrs old He was still in diapers and taking the bottle, couldn't talk, when he wanted something,all he would do is grunt, and he would just take me by the hand and show me what he wanted. I was frustrated.

We went to UNMC. They referred me to a WFDoctor that specializes in the SNC. He was diagnosed MMH. We enrolled him in ECD classes in school. There,he and entire family,had to learn ASL. It was a new and challenging experince. He did get P,S,and O therapy. Everything he needed he received from the DCSD, NDHHS. Here are some are his accompishments: He graduated from high school. He enrolled in Kung Fu in and earned a Red Belt. The next step is a Black Belt, with his name on it. He just became an "AC" with the RR: which is a form of BS, but with a Biblical Perspective. So if this is helpful; I would recommend for you to call your nearest clergy or school district. Maybe it will help to get any and all the imformation you can?

Whitney - posted on 01/01/2010

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my son had a brain mri scan and blood work also by the way they both come back normal and we still are puzzled

[deleted account]

i am pleased to say that we have had a meeting with people involved with jack and now they have decided that jacks not coming on as much as people would like. they are now arranging an mri scan and to have bloods taken while hes under general aneathestic! about time!!! x

Jessica - posted on 12/07/2009

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Hi Nickki!

Definately see a Neurologist if possible for an EEG to scan for any kind of seizure activity, and then yes, an MRI is definately needed! Even if they don't think it's necessary right now (not sure why they'd say no) it will only benefit you and your son in the future to have a picture of his brain at this very moment, if nothing else. Then you may have a repeat MRI in 6 mos or a year to measure growth and activity. This has helped me tremendously with getting answers w/ my son. Not really answers, but proof of damage and we've tracked it getting better with therapy, which is has done wonders for my peace of mind! If he is just simply not doing anything, for no aparent reason related to the 3 diagosis, then Neuro's the next step. just my opinion! Good luck, and hang in there...and I agree w/ Keila...when Jake smiles, I know that every all-nighter, the headaches and depression and fear, sacrificing and crying for what he's missing out on....it's alllll worth it! You're the Mama, and you know what's best and when something is wrong...you tell them what you think should happen next, and they've gotta do it. Doesn't mean insurance will pay, but the doctor will usually do it! Haha!

Keila - posted on 12/03/2009

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I think..MRI or Cat scan of his brain is a good start....Need to know if his delays are due to Damage to the brain .....My daughter has Cerebral Palsy and Mental Retardation...she is 5 and unfortunately due to Human Error...she suffered brain injury at birth...So it took them a while to admit to me what was wrong w/her...She doesnt eat, talk, sit up, walk....etc...she is totally dependant on me.....I feel ur frustration...just keep focusing on him and you'll figure it out!...Just maintaing his quality of health is important for now..my daughter has had over 15 surgeries...Its hard...but So worth it....When she smiles at me..I just melt...I wish you all the luck and blessings!..take care..

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