Thursday, August 5, 2010

Follow-up Visit with Dr. Ghosh

I know you have all been on the edge of your seats waiting for this post! It was hard for me to not make it the very first post from our trip to Ohio, but I had two reasons for holding out: 1) I wanted to build up your anticipation 2) I am just a little too OCD and had to put things in order :)

Our apptmt was in the late afternoon, so we put Kylie down a bit early for her nap and then had to wake her up so we could head to's about an hour away from my parents.

Here are some pics we snapped with our phones of Kylie on our drive.

Preparing to read her Princess book.

Clapping and cheering during the drive.

Digging into some Goldfish...she had to have the bag, and not just a little container with a few in it. She just needs to have some control....hmmm, I wonder where she gets that from :)

Reading a book in the waiting room.

Reading through her social story book that we created for the trip. We made sure she saw Dr. Ghosh's pic several times before meeting him that day.

Trying to open the cabinet below the fish tank. Just sooo curious!

In the middle of playing musical chairs with dada. She went from one to the next.

Staying close to dada with Snuggie and comfort items for Kylie :)

A bit of a paci smile here after Dr. Ghosh was talking to her. She warmed up to him so much better during this visit. She has improved leaps and bounds with the social stuff..way to go baby girl!

So what happened with the apptmt?

We more or less told the doctor how great Kylie has been doing and he was definitely pleased. He was excited to hear that she has close to 50 words, as opposed to the zero words she had 6 months ago. He could tell that her social anxieties have decreased quite a bit, based on how well she received him when he came in the room and upon his examination.

He seemed bothered that she signed so much and wanted her to drop the signs. Funny, because the speech pathologist is okay that she signs and says the signs will drop as she learns more words. And that is true, Kylie will either sign and say the words she has together or just say the words without the signs....just part of the process.

He did say he thought Kylie may likely have a very mild form of autism due to the social stuff, but that it can be managed.

He also mentioned that he thought the sensory and autistic-like features are unrelated to the Infantile Spasms, but knowing that Kylie had abnormal brain activity and seizures for a month, makes us believe otherwise.

I then asked the tough question as to whether or not he believed Kylie could or would lead a fairly typical life, since most kids that have had Kylie's history of Infantile Spasms have difficulty with so many things. I told him that I know she is still young and it may be tough to tell at this point, but I still wanted to know what he thought.

His response:

Yes, she should lead a typical life and she may just be shy with some things. And for us to continue to educate her and expose her to as many things as we can, so that she will know what her limitations are.

So that was definitely every bit of a great response!

I know it also means a lot of work ahead for us and showing her what is and isn't appropriate in all senses, but to know that we can help her have a typical life is so exciting! I am trying to remain a bit low-key on this...not that I am not just overwhelmed and jumping for joy, because I am. But because I don't want it to seem as though I am so hung up on whether or not she will be able to lead a typical life. We love Kylie more than anything in the world and will readily accept her as she is and will be.

I was worried to ask the doctor that question, but also wanted to know what his medical opinion was at this time. Matt is nervous about me posting the doc's response to my question, so I asked him if he wanted me to change it or whatever....he said no, and that he just likes to worry. He really does....I told him he needs to take a permanent leave of absence from his gig of worrying :)

Here is what the paperwork shows in her chart. I'm not sure if this is the final report from our visit or if there will be more to come. We waited after our last visit to get all we needed from him, but at this time he had no new orders for her. He said for us to just continue all that we have been doing.


Okay, back to her chart:

Visit Diagnosis:

Stereotypies (Primary), Autistic Spectrum Disorder


In summary, Kylie is a 20 month old girl with history of infantile spasms, treated with ACTH with no further recurrence of any form of seizure, so far. She developed features suggestive of milder form of autistic spectrum disorder, now improving in all parameters on appropriate intervention with behavioral training, speech therapy. I suggest continuing same management, prognosis seems good.


Once the visit was over. We asked doctor Ghosh if we could have a picture of him with Kylie and well, there was no chance Kylie would let him hold her for something like that, so here is a pic Matt snapped of me holding her with Dr. Ghosh.

They have this really neat image of a tree blowing in the wind on a wall downstairs in the clinic near the reception desk. You can't tell from the pics but it is really peaceful and just beautiful watching the image dance across the wall. Here are some pics of that:

Outside of the clinic was this really neat water display. It looked like a giant donut shape that had water flowing over the sides and it was so pretty. We had to get close and touch it and take a couple pics.

Note: Matt is not that wide...the shirt is deceiving, oh and we all know that the camera adds ten lbs.

You can kind of tell by the blurred feet that she was running and hopping around in this pic. There is a tunnel that connects from the parking garage to the hospital and it was pretty empty...last time there were tons of people walking through it. This time it was so open that Kylie just ran free through it, and loved it!

This was just a neat mosaic that was on the wall as we headed to the parking garage.


Wendi said...

So awesome to read such a great prognosis! She is growing up so quickly, she's really starting to lose the "baby" look and look more like a toddler. I pray for her, because even though I don't know her, I have a baby girl of my own and I would want all the prayers for her I could get. And give yourselves some credit, too, for her progress--you are obviously great parents, and she is so lucky to have you for her Mommy & Daddy! Take care of your beautiful girl...Wendi from Illinois

MJStump said...

It really is awesome to see how far she has come in the last 6 months...always amazing us!

Thanks so much for all the prayers Wendi! We can never have too many of those :) We try to do all we can for her, and hope and pray that it is exactly what she needs to help her grow.

Sending hugs to you for kind words and support :)

happy's mommy said...

We always ask "the question" don't we!

Overall it sounds and seems like Kylie is doing wonderful! I can't help but be excited to watch her blossom!

Btw...he's totally bogus on the signs. Communication in any form is GOOD! Trust the neuro with all things brain-ish. Trust the SLP with all things speak-ish!


MJStump said...

yes...we sure do ask "the questions." i know we can't always know everything for sure, but i'd like to know as much as we can.

not to mention that i no longer have to let the thoughts take over my mind if i get them out there and just ask.

i'm totally with you..we will let him handle the brain stuff and the speech people handle the talking stuff. plus i think we have an advantage with all the signs she knows...when she tries to speak we have a heads up on what she is trying to say since she pairs the talking and signs together :)

JSmith5780 said...

All the updates are wonderful. Congrats on the progress she has made.

Connor has Asperger's. He's social, but not appropriately so at all times. He manages very well though and is intelligent. He'll have no school problems.

MJStump said...

That is great that Connor is doing so well too...and that he manages things as well as he does!

They tell us Kylie already has some great coping skills, so I hope they just continue on.


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