3 Months and Counting: Still no Results
More than 3 months ago I took my kids into the Arkansas Children’s Hospital’s James L. Dennis Developmental Center for my son’s diagnosis of SLI to be updated and to determine if there was a change in diagnosis and to gather some recommendations on interventions and modifications for Jessica. In 07 my son was determined to have a speech-language impairment where he has trouble processing language and used to have some slurring and unintelligible speech. I always thought the kid was dyslexic. Now with stating that, you must know there’s more to dyslexia than reversing letters and reading words from right to left instead of left to right (not the technical name or description for these characteristics) and he did very little of the aforementioned. Of course my thoughts were shunned during that 07 evaluation but they agreed that there was some problem with speech and that I wasn’t just being an overbearing mom, and as you would think, they did question if he was on the autistic disorder spectrum. I knew for sure he didn’t have autism but something was up.
Anyways, over 2 years later the diagnosis is totally different and way out in left field in my opinion. He was diagnosised with mild MR instead of dyslexia or SLI. WTH!! I just couldn’t get why they were saying this and come to find out the person who evaluated him and was giving me this diagnosis has a clinic on the hospital campus for those with MR. Hmmmm. Looking for new clients? Also I know a bit about MR now since getting my master’s in SPED. There are prominent determining factors for MR.
So being that both my children were now labled as having developmental disorders, they suggest genetic testing with the results to be sent to both me and to the genetics clinic at the hospital. The sorry-ness of that clinic is the pits and I don’t even want to get into how disorganized and full of it they are. Knowing what I know about genetics testing I knew it would be some weeks to get results.
6 weeks passed with nothing in the mail so I wait a couple more. Still nothing. I finally call sometime in June and they swear they sent the results!! Where are they then? They had the correct address on file but I had nothing in my mailbox from them. Something wasn’t right.
I yell at a few people and question their intelligence, openly, and they swear they are going to send them again. Still nothing. Here it is with July almost over and the last time I called, less than 2 weeks ago, a nurse was going to call me back. Ha!!
I will be on campus next week and I hope I will have time to go over there and get the lies face to face.
My guess on what happened with those results…
The results didn’t jive with the MR diagnosis for my son. As soon as I came home from that appointment I looked up the syndrome they were genetically testing for which is Fragile X. Based on that info, my son doesn’t fit the bill.
I’ll be sure to update with the crap I find out, if I ever find out anything.
Oh and my son was evaluated again after this MR diagnosis for SPED services at schoool and it was said that some can classify his characteristics as MR but it can also be seen as SLI and some other disorder I forget the name of. We went with SLI because he doesn’t have enough MR characteristics to be classified as that, such as the cognitive part of MR. I don’t think I’m in denial either. I know this kid pretty well and he’s not cognitively impaired at all but I do believe professionals will lie for their own agendas.
This is remotely autism related but it’s just a day in the life of b.s. when trying to get help for your kids in Arkansas.
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Not all genetic testing companies are created equally, and I would be interested in what company was used. Many institutions go ‘in house’ and still others outside contract (for example, Kennedy Krieger used GeneDX and Baylor, but have also used Lineagen). The results usually take 3-4 weeks, and as noted in the post, are provided to the Pediatrician/Dev.Ped first and the family will receive the results shortly thereafter.
I had a similar trial with my son. He developed perfectly normally until the age of 2, when he started what we thought was “the terrible twos”. He did not want to respond to commands, usually he ran away screaming or flopped himself on the ground. His speech started to be slurry and over some time he stopped talking altogether. It took a lot of convincing to get the doctors to believe me there is something not right with this child ( he is my fourth, so I don’t have the time or energy to fuss over any of them too much). Finally they sent me to a neurologist who sent me to psychologist ( without doing EEG). Psychologist sent me to autistic clinic. The lady on the phone without seeing the child offered me their private autistic daycare services. I wonder what would be the diagnoses if I would go there. Well, I didn’t go for the testing. I went different way. We had some metabolic tests done, MRI and EEG including night EEG. There were some abnormalities on Lucas’s EEG. He was diagnosed with Landau-Kleffner syndrome and was put on anti epileptics and corticosteroids. The process took over a year. With this diagnoses it is crucial to start the treatment as soon as possible after the problems start. Frustrating!
Question these people that call themselves doctors. Challenge these people that are so sure they know everything because they spent x-# of years in a class room to collect a 8.5×11 piece of paper and said Hey I know what is wrong with you. Like hell you do, I never came from a book. I’m here with the grace of God, and God told me to tell you you’re not God so quit trying to pretend you know everything. Have a great day Dr. Do-little, that’s right Do-little, because the doctor’s today can do-little about anything in todays world. Thier not doctors anymore, their drug dealers. Them there doctors were making about $60,000.00 per month off of Michael Jackson. People in these professions that which are not being regulated will be tried in the court of God himself. Governments, justice systems, lawyers, doctors, and whoever else is being paid from taxpayer’s dollars.
How is it when government people are voted out, they get life time supply of pension. But when a young man goes and gets shot-up for the government in a war to which the government started. The soldier has to fight to survive when he gets home. You’ll make more progress with God than you will with any mortal mental midget (mmm) that runs around in a white jacket pretending to be GooD!! Have a great day!
Wow, I know how you are feeling. I took my son to a developmental center when he was 2 because he was delayed in his development in all areas, but most notably his speech. He didn’t talk at all. After hours and hours of questions and testing, he was diagnosed with Mild Mental Reardation as well as speech and language delay. We then had to go to our pediatrician for genetic testing. They did several, but were mostly wanting us to get the fragile X done. His tests came back 100% normal in every way. Still, we have the diagnosis of MR stuck on him. I don’t think that is what he has at all, but can’t seem to figure out what he does have. He turned three last week and still doesn’t talk. He has never uttered a single word, much as he really wants to, he just can’t. So he screams and acts out from frustration. He is beginning the special d. preschool in a couple of weeks and we are hoping they can help him make some progress there.
The entire state of Arkansas is a dump. I used to work in the oncology department of JRMC in Pine Bluff. Talk about a nightmare…
Sometime the idea of following the money is useful. Who paid for the tests? If anyone paid for a service that was never done ( it is a reasonable argument that if results can not be produced then the test was never done ) it is a crime and there are helpful people around to investigate .
If you paid ,demand your money back, try their accounting office as a start and then ask who to contact about fraudulent charges.
Even your insurance company or medicaid shouldn’t be happy about being billed for services not rendered.
Write it up as a e-mail and cc the president, BBB , surgeon general, your doctor ,hospital administer , Put ” The Reason for increasing health costs” in the subject line.
Just suggestions, e-mail addresses are easy to get, and how will health care costs ever come down if we are paying for tests with no results?
Wow that’s ridiculous! Sucks you have to go through all this. Ya, I would go in there and have a face to face. You have a right to know those test results. They should show them to you right then and there.