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View Full Version : Am overwhelmed and need help and insight re: testing



Tiffany
05-19-2011, 01:39 PM
I am feeling a bit stuck and a lot overwhelmed right now and wondered if any of you have any advice to give.
My oldest son Sam (9) has an extensive and complex medical history and is hearing impaired in both ears. We are really struggling with his behavior issues and knowing how to help him and how to get to a more normal place in our family. We decided, after years of anguishing about this, to try meds and are seeing a pschiatrist who started him on a medication this past January. He also began OT after that and we are learning how to implement that at home. It is all helping a lot but not at all enough.
At age 3 he was evaluated at a university hospital by a team of psychiatrists who determined he was developmentally delayed due to his medical history, and not on the autism spectrum. They recommended a psychologist to help us with the behavior issues. She spent 5 minutes with us before saying she really could not help him (due to his specific issues and history) and recommended biofeedback therapy, which we did not do. At age 5 a neurologist diagnosed him as ADHD and ODD.
Things are getting worse as he gets older. He had a horrible year in ps in second grade, and now he is homeschooled. Our pediatrician now (at age 9)referred us to a psychologist along with the psychiatrist for the meds (same office). Now this psychiatrist says he is not ADHD or ODD, and gave him a med. to stabilize his mood and anxiety and obsessive thinking issues. The psychologist on the second visit this time, says he cannot help ds and that he feels pretty sure he is on the PDD spectrum. He referred us to a place where they can work with him. I called this center and they require a diagnosis before they can see him. The name of the dr. who diagnosis autism does not take our insurance either, all out of pocket. The psychiatrist doesn't feel like we need the autism spectrum testing done b/c he said due to his medical history it is impossible to know if the things going on are because of what he has been through or truly autism... He says the OT sensory work we are doing is probably the best therapy for Sam.
We tried to get testing done last year through a neuropsychologist but it would not be covered through our insurance so we were not able to do this. He has a follow up visit with his (new) neurologist next week and she may be able to help us with a diagnosis. She is going over the results of the MRI ds had done recently with me, and I don't know what else that visit will cover. My pediatrician is going to refer to a developmental pediatrician but it feels like he is trying to talk me out of this b/c he says we already have all the specialists in place, and because it is a long tedious process and a waiting list to get in. ALthough he said he will do this, but to wait and see next week if the neurologist is able to test and/or diagnos him.
I am feeling so confused. I feel like we have gone round and round over these things for YEARS. And I don't have answers. Am I going about this in the wrong way? Am I missing something? How do people get an accurate diagnosis and testing done and help if they don't pay out of pocket for it? We also were approved in the fall for our state's medicaid for Sam due to his medical needs, so we have that as a secondary insurance. BUt still I can't figure out how to get the testing done. I don't know the exact terminology of what I want done. I want the series of testing that the neuropsychologist was going to do, including the educational learning areas because I feel that is critical for me to understand how to help him both with school and with behavior issues. I also think it will be beneficial to have the testing for autism because if he does fall on the spectrum than we will qualify for help. I feel this pressure of time because I feel that he/we need to be on the right track before he enters puberty and as he seems to be having more and more trouble doing any sort of activity with typical peers (and the teachers/leaders) and no one understands him and I have nothing definitive I can explain with. I don't know how to handle some of his extreme behaviors and I need to work with someone who can help our family.
Thanks for listening if you have gotten this far, and any insight. I guess I just need an outside perspective that can see this more clearly than I can and point out anything I am missing.

Cate OH
05-19-2011, 04:06 PM
No advice, just hugs! :group: Hang in there.
Praying someone with wisdom can point you in the right direction!

Hollie in SC
05-20-2011, 07:11 AM
:group: Hello, Tiffany. :hi:


We're in the Upstate of SC. Our youngest will be 7 next week and has Down syndrome and some related medical issues. We do have the Medicaid waiver. Obviously very different from what you are dealing with, but I'll give you the information I have.

After reading through your post twice, my off the cuff thoughts are go through the developmental ped. and (another plus) you'll probably have a much easier time getting it paid for. I know the one in Greenville has a 9 month waiting list. And, because I'm pushy when it comes to my kids, I'd be calling my regular ped. today and pushing them to get moving to get you into the system for the developmental ped. Now I'm not saying that is what you should do, but it is what I'd do. ;) :D :kiss: Once you get on their list and start filling out an unbelievable number of forms, you'll have some time to ponder other things. In the meantime you can look into other options, but getting on that waiting list ASAP will give you SOMETHING to fall back on no matter what you do in the next few months. KWIM? I have had several friends in go to our local develop. ped. and seem to be pleased with the experience. From what I remember with my friends, our local dev. ped. office seems to coordinate/work through all the info/tests/diagnoses/meds on the kids and figure it all out. :spin:

My other suggestion is Family Connections and local support groups. http://www.familyconnectionsc.org/ Are you familiar with them? They have a lot of groups throughout the state. They might be able to help you find someone with a similar situation to help you out or may have experience on their own.

Since you mentioned a "university hospital" that makes me think you're in Columbia or Charleston. In our area, there is a homeschool group for kids on the spectrum. Whether or not your child is, it sounds like there are some similar issues. You might want to email the group (look under Simpsonville http://www.squidoo.com/upstate_homeschool_support) and see if anyone there is able to give you any suggestions. If you are in Columbia, PM me through the boards and I'll give you info on someone who had a special needs HS group in the area a few years ago.

:group: Praying for you and your son and that you'll find the help you need.:group:

Tiffany
05-20-2011, 07:27 AM
Hollie,
Thanks so much for your response. I am in the upstate area so your information is extremely helpful. We moved here from California 3 1/2 years ago though, so the university hospital was in San Franscisco.
I did speak to the pediatrician yesterday, who said he would get the referral started. I am not sure why he has seemed to be resistant to it. If he would have started the process in January when we talked about it, we would already have been on the waiting list and that much closer to the process, so I wish I would have made sure that happened at that time.
I will definitely look into the info. you provided- thank you so, so much!!!

Hollie in SC
05-20-2011, 07:46 AM
I'm glad you found something useful in that. Welcome to SC and the Upstate.:hi:


Hollie,
I did speak to the pediatrician yesterday, who said he would get the referral started. I am not sure why he has seemed to be resistant to it. If he would have started the process in January when we talked about it, we would already have been on the waiting list and that much closer to the process, so I wish I would have made sure that happened at that time. !


It is so hard! :group: If I remember, once your office calls their office they'll send you a BUNCH of paperwork. Get ready as it is :eek:. However get it in ASAP because I think that is when they put you on the appointment waiting list. BUT I think they call you in for an initial meeting before that first appointment :spin: with a nurse or someone to start working through some of it.


I know that Family Connections does have an Autism Support Group in the area. They also have some Mom's Nights and other things. Sign up for their newsletter.

:group:

Tiffany
05-25-2011, 06:54 PM
Just wanted to update (btw I am still figuring out these boards or I would have updated the original post!)...
I feel like my first post was a mess to read- sorry about that! I was so overwhelmed at that point but am feeling much better now.
Our pediatrician did refer ds to our developmental pediatrician, and our neurologist told us that they will be able to do all the testing we need and it all should be covered by our insurance. I wish we would have been able to get the right kind of help he needed for these issues years ago. It makes me so sad that it has taken us this long, but I am so thankful that we will finally have all the information and resources we need to help him (and the rest of our family) from this point on.
Thanks for the prayers and support. :kiss:

DD in IL
05-30-2011, 11:38 AM
Sounds like you are staying on top of things and still searching for what is best. I don't have any helpful information but praying for your family.

Tiffany
05-30-2011, 09:21 PM
Thank you so much for your prayers DD.

AmyinWI
05-30-2011, 10:02 PM
I'm sorry you are having to deal with this run around. I know it's a difficult path. I have a 3yo with down syndrome, PDD (at least as far as the autism testing center believes) and other medical issues, so I know how completely frustrating it can be. I still do not have any clear answers about my son and how to help him. I can only imagine how you must be feeling since your son is much older. :group:

Jo in PRC
05-31-2011, 08:43 AM
I'm glad that you are starting to get some answers. For us, the final "ah ha" doctor was a pediatric neuropsychologist. He was the one who was able to look at our dd's medical history and do educational testing and really look at her as a whole little person. Then he gave us specific ways to help! Hang in there. :group:

Alice R
05-31-2011, 11:24 AM
I am feeling so confused. I feel like we have gone round and round over these things for YEARS. And I don't have answers. Am I going about this in the wrong way? Am I missing something? How do people get an accurate diagnosis and testing done and help if they don't pay out of pocket for it?

I also think it will be beneficial to have the testing for autism because if he does fall on the spectrum than we will qualify for help.

I don't have a special needs child but I'm a SLP for the past 20 years. (why do I feel old?) :lol:

I think that people have felt exactly the way you do and have paid privately. It is very hard to get the state and medical insurance to test and diagnose things correctly. I have not seen much luck with it personally. many times you see children in special education setting with a host of problems and I know there is a lot going on and they are labeled "learning disabled" or "ADD" which might be true but there is a lot more causing problems that ADD. But school districts don't really diagnose; they sort of "label" kids so they can be grouped appropriately for their skill level and taught reading, writing and 'rithmatic. ;)

I myself do that all day. I go in, do an evaluation and determine if the child needs speech therapy. It is not my job to offically diagnos children with ADD/ADHD or autism or any sort of problem. 95% of the time I can make a pretty educated guess as to what is going on but that is just not my job. Sometimes a sharp parent will try to pin my down on what is going on and I'll tell them point blank "your child shows signs of autism. You need to get a diagnosis to further determine that". I feel terrible but that is all I can do. And saying that is even pushing it. I work for the school system and I don't want to get sued. When I was really young, I had this kid on my caseload who was so darn autistic, it was blazingly obvious. I politely suggested to the mother that she get him looked at further becuase his lack of speech wasn't going to improve with speech therapy 2X30, he needed some major interventions. Well, the school heard that and I got into so much trouble I can't even tell you. That was the only time I got into any trouble professionally and I learned my lesson.

Since then I have evaluated kids with all sorts of things and I say nothing, which I HATE.

I'm off on a rant here but to get back to your question...sometimes I do evaluations in the wealthy part of NYC with families who are determined to find the cause of their child's issues... i walk in and they hand me stacks of reports from good doctors and therapists (paid privately) and tell me "my child has XYZ and they will be getting a lot of speech therapy, right?" and I say "yep". ;) They tell me these evaluations cost thousands of dollars. Contrast that with my other families who know something is wrong and cannot seem to get anyone to really LOOK at their child (or the parent is not aware enough to even want to look further, which happens a lot too).

I know this was not particularly helpful but I wanted to let you know that you are NOT alone with this problem. It is very hard to get anything done through the schools or insurance. So you are not crazy and not missing anything. It is hard for most people. :group:

Have you tried a clinical psychologist?

I hope you find the pieces of the puzzle. :group:

Tiffany
05-31-2011, 07:07 PM
Thank you for your note Amy. I hope you are also able to find answers soon for your ds. Because that is what we really want, isn't it? To find the help they need. :hcry:
Thank you Jo. I just found out from our ped. neurologist that there is a neuropsychologist in the developmental pediatrician's practice that does the testing. I need to find out if it will also be covered with our insurance.... I am glad you found the help you needed for your child. I love what you said about finding someone who is looking at your child as a whole person.

Tiffany
05-31-2011, 07:13 PM
Alice,
Thank you for sharing your perspective. I love hearing the stories of other people, especially from the "other side" (of the professional perspective) so to speak... so not a rant at all, very helpful and interesting to hear from you. Thanks for saying I'm not crazy because after going through this for so long I definitely feel that way. Our pediatrician asked me, "What are you hoping to gain from a diagnosis?" Well, clarity as to what exactly we are dealing with, and knowing where to turn to for the help we need. The system(s) are all so frustrating... they have such limitations. I do see the light at the end of the tunnel now, as far as finding all the pieces to the puzzle. I am hoping we can get all the testing done through the developmental pediatrician and it will be covered by our insurance. Thank you for your support. :hcry:

Jo in PRC
05-31-2011, 07:53 PM
"What are you hoping to get from a diagnosis?" I think you could tell your pediatrician you are looking for 1) an answer 2) to be pointed in a direction for seeking help 3) specific resources for your child's needs 4) a specific plan of action for addressing those needs.

I'm sorry that your doctor is less than supportive. Our pediatric neurologist gave us an explanation of why dd does what she does, a reading list, specific action points, general advice, curriculum recommendations and LOTS of loving support. We fought long and hard to get insurance to pay - and after several phone calls, most of the bill was covered.

Hopefully knowing that this sort of help is out there will be an encouragement to you. The process wasn't easy, but definitely worth all the battle.

AmyinWI
06-01-2011, 12:43 AM
I don't have a special needs child but I'm a SLP for the past 20 years. (why do I feel old?) :lol:

I think that people have felt exactly the way you do and have paid privately. It is very hard to get the state and medical insurance to test and diagnose things correctly. I have not seen much luck with it personally. many times you see children in special education setting with a host of problems and I know there is a lot going on and they are labeled "learning disabled" or "ADD" which might be true but there is a lot more causing problems that ADD. But school districts don't really diagnose; they sort of "label" kids so they can be grouped appropriately for their skill level and taught reading, writing and 'rithmatic. ;)

I myself do that all day. I go in, do an evaluation and determine if the child needs speech therapy. It is not my job to offically diagnos children with ADD/ADHD or autism or any sort of problem. 95% of the time I can make a pretty educated guess as to what is going on but that is just not my job. Sometimes a sharp parent will try to pin my down on what is going on and I'll tell them point blank "your child shows signs of autism. You need to get a diagnosis to further determine that". I feel terrible but that is all I can do. And saying that is even pushing it.

Alice- I just wanted to say , if it wasn't for Gabe's OT saying something like "I think he is showing signs of autism" I never would have gotten him tested. I had been thinking some of his behaviors were "off" but I couldn't quite put my finger on it. So I thank you for pointing those questioning parents in the right direction. :kiss:
I understand that you cannot say certain things, and can't diagnose. but someone like you that works so closely with kids like this certainly has a lot of knowledge about these things. I hate it that you have gotten " in trouble" for trying to help families :group:

Alice R
06-01-2011, 03:47 PM
The system really stinks sometimes, doesn't it? You have educated people who have experience and want to help and can't. Nice government system we are trapped in. :mad:


That's kinda an odd question, what are you hoping to get from a diagnosis? Uh, what would HE hope to get from a diagnosis for HIS son. :mad:

Recently, I saw a kid was misdiagnosed...he was clearly autistic and some incompetant evaluator said he was "within normal limits" so I complained to my agency and we went 'round and 'round. That kinda stuff really drives me crazy. I said "would you accept this evaluation for YOUR child? Would you use this evaluator for YOUR child?" She said "no way" :eek: I said "then why are we using this idiot woman?" She said "this is NYC, you get what you get." She happened to be a Christian and I said "this is NOT how we treat God's children" and she said not much after that. They never did fix the evaluation or send in a real psychologist and here this poor child was 18 months and flapping and spinning and such a classical case of autism with ALL the services available and he is getting speech two times a week. I followed up on it recently and that is the end of the story.

The current system is very frustrating and I don't think it works for children who need help.

Hollie in SC
06-03-2011, 08:21 AM
Tiffany, here is the link to the current Family Connections newsletter. Lots of stuff in the Upstate.
http://www.familyconnectionsc.org/public/files/docs/2011_Link2U_May_5.pdf

Tiffany
06-06-2011, 06:54 PM
Thank you Jo.

And thank you for the link, Hollie! I am thinking about going to one of the support group meetings.

Amy in MD
06-14-2011, 04:08 PM
We just got private evals set up for my son for autism and it has been a nightmare. The school district did full evals and found ds had autism but left us with no answers as to what to do about it. They of course think that putting him in their special ed preschool is all they need to offer along with having the school speech therapist work with him a couple times a week. Needless to say ds has made very little progress in the 4 months he's been at the school. I finally was able to find a place that takes our insurance to do a private eval but I had trouble with the insurance company over it because their 2 preferred locations were over an hour away. After several phone calls they said I could go to a place closer but they were not taking new patients. As of yesterday they called saying they would see ds in 3 weeks so hopefully we'll get this moving along.

I will warn you that many insurance companies cover very few autism therapies. Ours covers next to nothing and I can pretty much count on any claim with a autism diagnosis code on it to be denied. I have not been able to get any private therapy for ds and I live in a state with an autism mandate. My insurance policy is self funded and they are exempt from the state mandate which is extremely frustrating. Every therapy recommended to us so far (OT, Speech, and several kinds of behavioral therapy) are not covered. Networking with local families would be a good way to find out what kinds of services people are able to get near you. It seems to vary so much by state and different insurance policies. I know a lot of people are successful getting behavioral therapies paid for but many are not.

Hollie in SC
06-14-2011, 04:18 PM
Amy, look into Katie Beckett funding for your state. :unsure: Every state should have some type from what I remember. Every state has different rules and waiting lists. Some are ridiculous.... This page may be a place to start as well as your local support groups and area moms. You might also call your state Dept of Special Needs or Health Services. I'll warn you, though, it may be tricky as we were given wrong info at the hospital and it took months to find out we were eligible. BUT it may be a major blessing if you can get it figured out.

In SC it is TEFRA as a secondary insurance with Medicaid. It is based on the CHILD'S income and not the parents. My friends with kids on the spectrum locally get much of their therapies covered with it. :hcry: It is how we've been able to give Noah so much therapy.