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Thread: Is it possible

  1. #1
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    Default Is it possible

    *sigh* Morgan is struggling so much right now. Its hard to put into words what is going on. Her teachers and the school "autism specialist" say that she meets all the criteria, even our large hospital (CDRC) scored her on the autism spectrum, but then wouldnt give the diagnosis because they thought her eyes were mishapen and perhaps her difficulties were due to a "syndrome". Had a high resolution chromosone study done and it was 100% normal.

    Anyhow. Over the last few months Morgan has been struggling more and more. Nearly 4 months ago I started my own business so that I could have her with me instead of a day care. Roughly 2 months ago we started seeing an enormous change for the worse in her... no diet change, no new meds, nothing different. She started hating school (which was nothing new) but the tantrums were off the scale. We had out IEP and even they saw some large inconsistancies from where she was when she was discharged from EI at 3, to where she is now. She seems to falling behind in the social scene, and advancing in some academics (she just turned 5 and can read basic board and paper books)

    Today was the motherload of all fits. It started this morning and then grew and grew. I had to have my mom come and get her from my store it was so bad and it just kept going until she broke and feel asleep. I was at my wits end.

    I have a good friend who comes & helps me at the store now and brings her 3 year old high energy son with her... he throws Morgan off too, although she adores him, he adores her and doesnt want to leave her side. I know this is part of it but am not sure how to go about fixing it. But her tantrums and other issues started mounting before they started spending so much time at the store with us.

    Ive also noticed what i think might be a tic. Often, when she talks, she echoes herself. Example: If she says "talks" it is followed by 3 "ks... ks... ks" She doesnt do it all the time, but often enough that I have noticed it.

    Her 5 year birthday 2 days ago was a huge bust too.

    Im just so lost. Is it really possible for autistic traits to get worse, because that is what seems to be happening.

    any advice is appriciated.

    Thank you,
    Tonya

  2. #2
    danellsar is offline INCIIDer - A Community Creator
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    Hey there my one time due-date buddy. Long time no hear. Sounds like you've been struggling a lot.

    My personal opinion, from experience with my dd who IS on the autism spectrum, is that yes, at times symptoms do get worse. This could be associated with times of stress (changes, for example) or growth. As the body grows and changes, the hormonal balance changes, and especially in our girls. As my dd hit puberty things got OUT OF CONTROL worse and worse. We finally made the decision to get medication for her anxiety attacks, and that has helped some. It doesn't touch the autistic behaviors, but it does help her keep her temper in check and her meltdowns are shorter and easier to recover from.

    As far as the tics that you might be seeing, there is a lot of co-morbidity between autism and tourette's. Has Morgan seen a neurologist? That might be a direction to look into. She might also be getting mini seizures, which would be affecting her speech and development. There are so many things that can happen, especially with one such as your darling girl who was so medically fragile at birth.

    I know that there are certain kids who trigger my dd big time. She just cannot be around them, they set her off too much.

    If you still think that she is on the spectrum, you really need to get a diagnosis that will fit. There are many excellent autism treatment and assessment centers that can do a complete, multi-specialty assessment (psychiatry, OT, PT, speech, etc), but most of those have 1 year or longer waiting lists and charge $5-7K to do the testing. Here in northern CA, the MIND institute is world class, and they often see kids from other states who are seeking dx. My dd sees a psychiatrist through MIND and also attends social skills groups. I've learned so much through my encounters with their doctor's and clinicians. I don't know if there's a comparable research/assessment group near you. You need to ask a lot of questions even before you bring dd there about how experienced they are with autism and it's co-morbid diseases (add, adhd, tourette's, anxiety, panic, etc.).

    Many many many . I wish it were easier.
    Ellen

  3. #3
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    Default (((Ellen)))

    Long time is right. Since the board change, so many people dissapeared. When the boards fell quiet I stopped coming by as often. Doesnt look like many of them have rebounded ufortunatly.

    We were seen by the OHSU's Dornebcher's Childrens hospital at the CDRC (An autism speciality place) Our appt was 8 hours long and she saw OT, PT, child psychologist and neurologist. It was, seriously, the best day she has ever had in terms of behavior. They saw a few concerning issues (toe walking, eye contact, overly interested in certain things, some minor flapping) but they saw that her eyes are almond shaped. On the autism assesment they did, a score from 8-12 was considered spectrum... 13 and up was autism. Morgan scored an 8. Even tho she got that stupid score, they were so focused on her eyes that they felt she has a syndrome so we had to do a high density chromosone study. Waste of time and $800. It was normal. She has many characteristics of autism. But a few that they say do not coincide with autism. She is sensory seeking. Loves exoctic foods and textures, loves tags, HAS to wear clothes, ect. So those inconsistensies added to the non-diagnosis.

    Poor Morgan is recouver from Pnuemonia AGAIN this year to top it all off. im just beside myself..... feeling very helpless and very worried.

    Gotta go get ready for work, have a super nice day and lets stay in contact. Im on facebook (tonya houston).. are you.

  4. #4
    jeninnc is offline INCIIDer - A Community Creator
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    I notice when Ellie is sick - things go rapidly downhill. One of my friends ds's is sensory seeking and autisitic, I think one doesn't exclude the other.

    Hugs and I hope things look up soon. For us the key was the structure of full day K - it helped tremendously.

  5. #5
    sugarsue is offline INCIIDer - A Community Creator
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    Default Hugs!

    I'll start off by saying I know this about myself, I learn something new and then I think I see it in every kid, so sorry in advance about that

    When you mentioned the tic it made me think of all this PANDAS stuff I'm learning about so I just have to ask, has she had strep recently or been around someone who has strep? With PANDAS you will see a sudden big change that seems out of the blue and very much for the worse.

    BIG HUGS!

    Susan

  6. #6
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    Default no strep that I know of

    we have had a sore throat, atleast I am assuming she has as well, and she had pnuemonia. What is PANDAS?

  7. #7
    angeleena is offline INCIIDer - A Community Creator
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    Hi,
    our ella was ASD and then came off of that spectrum and then GOT WORSE due to major sensory issues and adhd.

    she is still a mess, but much better.

    It is a really lame mix..... ADHD and the sensory issues...the sensory stuff makes her throw HUGE tantrums. We keep that under some control with lots of sensory diet stuff...but mostly with the medication risperdal. Also, she is now on adhd meds which have actually REALLY helped her fit throwing too. She is much calmer now thankfully.

    I just wanted to say that we saw our girl get a lot better, then get worse....like one thing cleared up and something else came in it's place that was actually worse in some ways. Or?? it was adhd all along and never autism spectrum.

    Have you taken your girl to a child psychiatrist? Did they have one at the CDRC? Are you open to meds?

    Angi
    ella age 5

  8. #8
    trek is offline INCIIDer - A Community Creator
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    Tonya-first to you and Morgan. Even without a dx could different therapies help Morgan-sure. So what is she currently receiving at school or privately?

    Some things to try if you have not already-brushing, joint compression, deep pressure activities like jumping, making a Morgan "sandwich", heavy work like pushing a cart, or pulling a rolling kid's suitcase filled with things. These often help a child "organize" themselves when faced with new places, changes in academic environment.

    The speech issue may be disfluency beyond developmental it is hard to say before age 6. I know a lot about disfluency and even echolia.

    again

  9. #9
    BriNJ is offline INCIIDer - A Community Creator
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    Tonya,
    Im so sorry to hear this, I was hoping that all quiet meant things were getting better.

    Does M have the autism label formally? If not, I'd push for that right now- and explain that since its the only fit, that she needs it. What type of help does she get at school? Id push hard for the label if you dont think she's getting the help she needs. Have you looked at the local universities? I know one near us in NJ has 2 different autism clinics- maybe something like that is near you that can help?

    I'm so sorry to hear the weariness in your voice, big hugs to you.
    Bri

  10. #10
    sugarsue is offline INCIIDer - A Community Creator
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    Quote Originally Posted by Tonya77 View Post
    we have had a sore throat, atleast I am assuming she has as well, and she had pnuemonia. What is PANDAS?

    http://www.webpediatrics.com/pandas.html

    This is a good link to read about it but you can also search PANDAS and find other stuff. I can send you a case history too that is really good at showing what can happen to these kids if you think it's anything you should look into.

    Susan

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