I'm new and my daughter is a mystery

Discussion in 'General Parenting' started by Jennam, Nov 3, 2016.

  1. Jenm

    Jenm New Member


    Okay so my daughter is four next week. She has seen 9 different doctors and specialists and is undiagnosised. She shows all the signs of a high functioning autistic girl. I say girl because the dr wanted me to push for Obsessive Compulsive Disorder (OCD) sensory processing disorder (SPD) and anxiety but would not give her Autism Spectrum Disorders (ASD). She is definitely sensory processing disorder (SPD) with old tendencies and does have anxiety. She has mild hand posturing issues. Delayed motor skills. We pretty much had crap doctors who sent us up and down with no interest in finding out what is going on with my child. She has days of what I call clarity and is in a horrible term normal.. I know I know horrible term but she doesn't display the issues she has. I've noticed she is prone to self harm if she doesn't have enough stimulation. She has oral fixation and accommodative esotropia. Milk allergy, silent acid reflux and an undiagnosed leg issue that causes limited mobility accompanied by cramping and pain since she was an infant that doctors have dismissed. She is my little mistery. we will be seeing a children's hospital next year and hopefully get some answers. Anyone have any similar experiences ?
  2. runawaybunny

    runawaybunny Administrator Staff Member

    Hello @Jenm

    Sounds like you are doing the best you can to seek out good professional advice to help your daughter. Hopefully your upcoming evaluation at the children's hospital will get you access to more competent doctors. It has to be frustrating for you right now.

    I don't have any similar parenting experience, but I wanted to let you know that I read your post and offer you my support.
  3. Jenm

    Jenm New Member

    Thank you ❤️
  4. pasajes4

    pasajes4 Well-Known Member

    If you live in the US, you could contact your local school district and find out if they have an early intervention program. They might be able to provide you with the names of professionals who could help you.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I would take her to a neuropsychologist (which is not the same as or anything like a neurologistl). It is a psychologist with extra training in the brain. They do intensive testing and often nail it when nobody else can.

    As a mom with experience, I think she may be on the autism spectrum somewhere. These kids are very puzzling and hard to diagnose.

    Wishing you lots of luck!
  6. Jenm

    Jenm New Member

    We took her to the school district and got told she was too smart... It was ridiculous. We recently moved and she will be starting in the new year.

    I actually emailed the chief of neurology at the children's hospital where we are and she wanted to see our daughter as soon as possible no matter how long it took. since then it's been about a little less then a year and we finally switched insurance to be able to take her to the children's hospital. It's been one big hassle. I will be requesting all the testing we can get. Our biggest issue is she exhibits autistic like behavior but not stemming and that stumps the doctors so they give up. This new hospital should be different since we have a close friend who's daughter attends and referred us.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Why a neurologist? in my opinion that won't help.

    Stimming can be very insidious. Could be hard to figure out. She has tons of autistic traits. That's why I suggested a Neuropsyc. They really do good testing. A neurologist mostly looks for stuff like epilepsy that you can see on an e e g. You can't see autism. It is a spectrum and a specific set of symptoms. No autistic kid has every symptom. They delayed my son's diagnosis because they said he had good eye contact and was too friendly.

    He has autism but is doing really well as a young man because he got so much help after the diagnosis. He is 23, on his own, and has two part time jobs and a good life. He does get social security too.
    Last edited: Nov 4, 2016
  8. pasajes4

    pasajes4 Well-Known Member

    The changes in the DSM ( the "bible" for psychiatric diagnosis) has caused many psychiatrists to back off a diagnosis of Autism Spectrum Disorders (ASD). Psycs are sometimes reluctant to give definitive "labels" to very young children. Early intervention for any disorder is critical. Check out Easter Seal, Any Baby Can, Your local MHMR ( they are not just for mental retardation), google early intervention in your area.
  9. Jenm

    Jenm New Member

    Well the nuerologist wants to see her based off of her leg issues plus the intellectual issues. She wants an Mir to make sure there is no underlying illness causing the issues. We will be setting up a team of doctors along with genetics to find out what is exactly setting her apart from other kids on the spectrum.
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Probably nothing, like my son. All kids on the spectrum are unique. Psychiatrists know little about autism because it is a neurological glitch, not caused by a mental health disorder. We got no help from regular psychologists, therapists or anyone at school. The only professional who bothered to do the intensive testing necessary to really see autistic spectrum disorder was a Neuro psychologist. In the US, this is sort of the gold standard for diagnosis. And diagnosis is everything when dealing with proper treatment and school.
  11. susiestar

    susiestar Roll With It

    We absolutely loathed and despised the neuropsychologist we saw. The only thing he paid attention to was his opinion which he formed before he ever even saw my child or spoke to her, much less did any testing. I shudder to think what my oldest child would have done to the man, because they would NOT have worked together in any way shape or form. But I think it was mostly because his ego was too big and his knowledge was too small, which is likely a personal failing.

    We had AMAZING luck and results from a developmental pediatrician. He was amazing and had a team approach with a bunch of different types of professionals. They all saw and did testing on each child, then met as a team to discuss the results and come up with a likely diagnosis and course of treatment. Wiz didn't like all of them, refused to work with one of them (she spoke down to him, always a mistake with a child, in my opinion), and couldn't fool all of them (which he was good at). So we got really good results where the good and the bad evened out into an overall accurate picture that helped.

    I think you will need a similar team approach but the mix of professionals you need will be different than what we needed. A children's hospital is the best place to find this.

    Please go to the link in my signature and read about the Parent Report. I think it will be an invaluable tool as you get help for your complicated little girl. It is a report based on an outline that moms here created that tells about your child. It helps keep all the records organized and is a very powerful tool. I kept copies of certain sections in my binder to give to doctors to help them understand my child. Be sure to include a photo of your child in the front AND at the beginning of each section. It helps the docs remember which child they are reading about. I was told it was very helpful - I just photocopied my son's picture onto the front of each section because using actual photos would get expensive. I don't think I can stress how much this helped us get the care and help that each of my kids' needed, or how powerful a tool it was. There were very few questions a doctor could ask that I could not pull up an answer for in just a few seconds. This was especially helpful when medication changes were discussed - often the doctor didn't know what other medications had been trialed or how my son reacted. But I could tell them without having to rely on memory in a stressful situation.

    I think the more complex our kids are, the more active we need to be in advocating for them. I often heard my oldest son, Wiz, was 'too smart' for an IEP, but then a teacher would actually have him in a class and be begging for help. It didn't matter how smart he was, he couldn't function in a classroom for a variety of reasons. Chief among them was boredom, and my boy did NOT do well when bored. He found all SORTS of things to irritate and annoy others unless he was given something interesting to do. He also had sensory issues and other challenges, all part of being an Aspie. His IQ is actually VERY high, but unless he sees the logic in something, getting him to do it is like pulling the teeth out of a very awake very unpleasant animal. NOT a fun endeavor, if you understand.

    I wish we had known earlier what his challenges were. Wiz wasn't diagnosed until age 7 and that is late for starting interventions. Continue pushing for help the way you are because the earlier she gets help, the better off she will be. My youngest has sensory integration disorder and we recognized a problem much earlier. I noticed lots of little things, but mostly others noticed that he could NOT stop chewing his shirts. I don't think I bought a shirt for more than a quarter until he was in fourth grade because he chewed holes in them so fast. His teachers were really grossed out because his entire front was often dripping with saliva before lunch. We found a private Occupational Therapist (OT) because they look at total functioning, not just what will make them function in school better. We were taught to do brushing therapy and it had amazing results. When my youngest started school he couldn't handle going to school all day every day. He would overload and sit and shake for hours, or even entire weekends. It was scary because he would just shut down and stare mostly or else he would get so bad he just screamed himself hoarse because he couldn't tell us what was wrong.

    We were truly lucky to work with elem schools who understood. Mostly I think his teacher understood the issues, and the attendance secretary knew how important school was to our family, so we were not keeping him home just out of laziness. Seeing him just tremble and look so blank when overloaded really upset both his teachers and the office ladies. So we got few attendance hassles. In first and second grades he missed more school than he attended. He LOVED school, and wanted to go, but would get so overloaded that he couldn't cope. I can remember being so excited in 4th grade because he only missed what amounted to 1 day a week. Now in high school, he only misses maybe 4 days a year and those are usually because he gets a minor bug.

    These are my thoughts and ideas, and some of my experiences. My main piece of advice is to ALWAYS follow your instincts because you have them for a reason. The biggest mistakes I made with my kids were made because I ignored my instincts. The doctors and other 'experts' are experts in a field of study. They spend mere moments with your child, even during the most intensive testing. YOU spent months with her a part of you, and have devoted hours upon hours of your life to her since. YOU are the expert in your daughter, not the doctors.

    Again, please visit the link in my signature for the Parent Report, and I hope you can figure out a way to help your little girl.
  12. mof

    mof Momdidntsignupforthis

    I echo the photo thing. I had twins with an iep that included Occupational Therapist (OT) also. They were young and we would have the mtgs back to back, yes, they looked very similar....but DIFFERENT.

    Pics were important and the parent notes to distinguish both their different personalities and needs.

    Great you are a good advocate...we are all the voice our children have until you find the right help.
  13. Memedixie

    Memedixie Member

    I am new here also and have found so much support. I pray you find the right doctor to help your daughter. It makes you feel helpless when you are trying so desperately to find the solution. Sending you hugs.
  14. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    There are always lemons. Neuro psychs are often quite good. If one seems off don't go back and find another. Ours changed my son's life and he is still doing great. A good way to judge is to get a recommendation about a professional from somebody (Or more) you know and trust who has used the professional. Access how their own child is doing under his/her care.

    That is how we found our Neuro psychologist. It is also a good way to find any professional.