Update on my sweetie

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Update on my sweetie

Postby Mayzoo » Thu Jan 28, 2010 3:07 pm

Roz asked that I come post an update 8) , so here goes.

The short version is my sweetie is doing quite well comparatively. She will be eight in a few weeks, is not decompressed at this time, has ACM1, SM (Very thin), Arachnoid cyst (right cpa angle), Autism, torticollis, bi-lateral strabismus, etc................ Her bad days are very few now, and seem to be shorter bad episodes than in the past. I have been waiting for "the other shoe to drop" for a while, while praying and hoping it does not drop, and it has not so far. She is home schooled with me and has never been to public school (long story). She is what would be called at grade level (1st grade due to her birthday) but on the lower end of the scale I am sure. She can read simple books if I keep her on task, and she is doing single digit addition and subtraction. Her penmanship still leaves a bit to be desired, but hey I cannot have it all in one day can I :lol: ? She writes letters to all her relatives (I tell her what to write, but she writes it) as her penmanship practice, and the extended family can now read what she writes the majority of the time. She has taken a real liking to a play station one game named Spyro the dragon, and she is darn good it too. Not bad since most her "professionals" say she has an IQ of 49, will never be capable of reading, and is not capable of having a sense of humor :lol: . Her sense of humor is quite well developed too, and one of her nicknames is giggle bunny. If I could adequately express to her that several professionals have stated she could not have a sense of humor, she would fall out her chair laughing :lol:

The longer version is: I believe the last thing I was on here about was her NSG out of the blue wanted to put her on Risperdal for her autism, her one medical condition I have never actively sought medical help for :roll: . Of course she has autistic symptoms, but her father, myself and her all work together to overcome any behavioral issues we encounter, and she had OT and ST for several years. Though I feel some people may need to medicate their children for safety reasons, sweetie is not one to be a risk to herself or others at this time, and she is barely on the spectrum of autism. Had this approach of medication been mentioned and then dropped, I would not have been upset, but the NSG turned a visit about her ACM1 entirely into a visit about autism and no longer wished to even discuss her ACM and also refused to prescribe medication he had been prescribing for years to mitigate her pain (topamax). He was an out of state NSG and told us we had to start getting her meds locally (except the risperdal), even though when we called he told us we had to drive the 1000 miles to an emergency appointment to get her meds evaluated by him for a 5 day bout of debilitating pain she was going through at the time. We are now getting her topamax locally and not giving her risperdal, and have not been back to this NSG since that visit. She saw a NSG more locally, that is not as renowned, and he thinks her skull has grown enough that she is having less issues with her ACM and he has essentially released her from NSG care (as of this month) unless and until she has additional issues (I am watching like a hawk). Her vision in her left eye is absolutely deplorable. We are seeing the eye specialist on the 12th to discuss if there is anything we can do to stop her from complete vision loss in that eye. Right now she cannot see clearly unless the object is touching her eye lashes on that one eye, and even with the corrective lenses she sees blurry out of that eye. She has never had intra-occular pressure or pressure/deterioration of the optic nerve.

Thanks for listening to the rambles, and if I forgot something, of course ask....I will lurk around and see if I can catch up a little.
My Sweetie DOB Feb 2002, DXs: ACM1, AC, SM, Autism, SID, Torticollis, Bi-lateral strabismus. More than the sum of her diagnosis'. Reminds me of Elmo :D
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Re: Update on my sweetie

Postby razzle » Fri Jan 29, 2010 2:46 pm

thanks for the update and hope you drop in from time to time . R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Update on my sweetie

Postby Janice » Fri Jan 29, 2010 8:42 pm

Thanks for the update, Mayzoo. Glad to hear that Sweetie seems to be improving on some levels. It's good that you switched NS's, especially knowing that she needs the Topamax for pain.

Did Sweetie have any visual disturbances prior to starting Topamax? I ask because there are a few members on the board who encountered serious visual issues and/or loss, while on this med. Once the med was stopped, the visual disturbances went away, or vision loss was restored. Just wondering if the med might have impact on her visual issues.

Has Sweetie ever been evaluated by a CM/SM expert (being a renowned NS doesn't mean they're experienced with CM/SM)? Seeing an expert provides a clear understanding and pathway to an accurate treatment plan.

You are correct that not every child w/autism needs to be medicated. My niece (and her mother) works with her son rather than medicate. They feel strongly about not medicating him. He seems to be doing well in all developmental areas and attends regular school. He's even been on the honor roll. His behavior can be a bit problematic, but they feel as long as they continue to work w/him, he'll be just fine. They've said that the school works very well w/them and they've never had to do any of the plans structured for children w/developmental issues or special needs.

I applaud anyone who can provide homeschooling to their children. I think it's great that you're able to provide this function for Sweetie. Writing letters to relatives is quite a creative way to practive writing.

Again, thanks for the update and I pray Sweetie continues to do well/improve.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Update on my sweetie

Postby Mayzoo » Sat Jan 30, 2010 11:40 am

She has had visual issues her whole life from what I can tell. She had a traumatic birth and most the damage she deals with is related to that.

Her right eye has fair vision, and 20/20 with correction, her left eye is most likely worse than legally blind with correction (hard to get exact numbers with the communication issues). She was off Topamax for a bit over 6 months with no improvements. I will check to see when her eye appointments were based on when she was off meds.

Thanks for the responses :)
My Sweetie DOB Feb 2002, DXs: ACM1, AC, SM, Autism, SID, Torticollis, Bi-lateral strabismus. More than the sum of her diagnosis'. Reminds me of Elmo :D
Mayzoo
 
Posts: 21
Joined: Thu May 24, 2007 6:12 pm

Re: Update on my sweetie

Postby Mayzoo » Sat Jan 30, 2010 9:06 pm

Oh and the NSG she saw that wanted to push meds was a Pediatric Chiari specialist (ASAP and WACMA approved). I forgot to mention that.
My Sweetie DOB Feb 2002, DXs: ACM1, AC, SM, Autism, SID, Torticollis, Bi-lateral strabismus. More than the sum of her diagnosis'. Reminds me of Elmo :D
Mayzoo
 
Posts: 21
Joined: Thu May 24, 2007 6:12 pm


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