I reported that Kaylee has been making some strange new movements, but we haven't seen her make the exact same movements each time that we have noticed. They are similar. She gets a blank stare on her face then kind of holds her hands up. She does this about 4-5 times a month, so it's not all that often. However, she is on Topamax.
We also reported that we were unsure whether or not she was having seizures at night, since she hasn't sleep in our room in months.
We reported her results of her OT and PT evals and the EI's reports. She is currentlyfunctioning at about an 8-9 month level overall. She is going on 13 months now.
He basically told us that because she was making progress he wasn't concerned. I asked why he wasn't concerned, since as of our last appointment she was only about a month or two behind. He said that since cognitively she seemed on track, that he wasn't concerned with the fine and gross motor being off.
He also seemed very fixated on the diagnosis of TSC, even though I had brought up that she doesn't show any other symptoms of TSC. Our family shows some symptoms, but nothing conclusive. She has completed the genetic testing which was also inconclusive.
I challege the diagnosis because I just don't get a strong gut feeling that it's right. My gut has been right so far, so I tend to listen to it.
I am concerned about a 13 month old baby that just began crawling two weeks ago. Kay is not standing on her own or walking. I know that the walking deadline is 18 months, but I'm not going to burry my head in the sand until then. Sorry, I made the mistake of listening to a
doctor tell me my baby was ok once already and Javi turned out to have Autism. Fortunately, Kay already receives a lot of services that Javi missed out on with out a diagnosis, but that is exactly my point, how far behind would she be without them? Would he be more interested in
getting to the root of the problem then?
We are in the works for a repeat vEEG, but I pretty much had to push for a repeat. He increased her meds for the time being.
I know that it may not change the treatment plan, but something tells me something is a miss. I think it's time for a second opinion.
Shanna Grimes
(Sent from my iPhone)
8 comments:
Have you tried contacting someone from the TS Alliance? Vicky Whittemore is their head of "scientific stuff". She might be able to help you make sense out of the TSC findings, family history, etc.
Good luck! You know our TSC story is just as complicated/confusing!
always go with ur gut - i think a 2nd opinion couldn't hurt! good luck girly! :0) xoxox
You already know I'm with you on this one! It's so hard to bridge that gap of your child over-coming...but still needing intervention! These babies are not okay...they may overcome everything...but that's a someday thing! Grrrrrrrrrr...it always makes my blood boil. I've had to fight (or at least feel like my dukes are up) for Trev on so many levels. I think you run into the same wall...Kay is cute...and she's doing *well* in so many ways...that they tend to downplay the deficits & make us feel like we're nutso!
I've told Trev's neuro (who I adore btw) for MONTHS that he has no speech recognition...and because he'd turn once or twice when his name was called she chalked it up to me being over-protective. Only to have the BEAM reveal that there IS a significant disruption in his brain's ability to decipher speech from noise! I WAS RIGHT all along! I think God put that instinct in us. I think your heart is already pulling at you enough to follow it's lead!
((((big fat hugs))))
...danielle
Jen- No, I haven't tried that. I will have to look in to that. I have spoken with a TS alliance chairperson, who happened to be an IA in Javi's class last year. I have spoken to her many times about the differences in symptoms from person to person. She has a son that is 21 who has had a similar seizure journey to Kaylee thus far. She recommended I see her son's former pedi neuro, who happens to be one of the best TSC specialists and she is here in SD. I think that's where we'll go for a second opinion.
Mama-Think I will :)
Danielle-It was great talking with you yesterday. It's nice to know that I'm not alone in this struggle.
Thanks for all your great advice. I look forward to talking with you again soon.
Shana,
I found your website through Trevor's webpage. Kay is a doll! If you are worried about development, I was told by my PT and OT when I questioned how far behind Charlie was when we started. It was the end of May-beginning of June when we started therapy, and he was not even sitting up at our first PT visit. He could not pick up a toy or feed himself. He just turned 8 months old at the time. Now, he is 11 months, and does all of the above, and within the past few days started to crawl backwards! OT and PT was only recommended every other week, but my neuro said weekly for both, so that is what we get. If you saw Charlie, just like Kay and many others with IS, you would not have a clue all they have been through. I was also told to take the 3 months on ACTH into consideration, so to me, he is 2-3 months behind, but I am just so grateful for how fast he has come along and how he continues to develop. He had to fight his first year and has been through more than my other 2 boys by far.
When you said the neuro thought Kay was fine cognitively, that is what is felt about Charlie too but it is really hard at this age to determine. I always worry about his development, but at the same time, every time he meets a milestone I say to myself, "We weren't sure if this was going to be possible". I LOVE watching him develop and act just like the cute little boy he is.
Sorry this is so long, if you would like to visit his webpage, it is at www.carepages.com with the carepage name: CharlieSalzman
Take care,
Molli Salzman
Molli- I'm happy to hear Charlie is doing so well. We love hearing success stories. We are very proud of the progress Kaylee has made and are so thankful for it, I just want to be certain we are doing all we can for her. I turned a blind eye with my first son and his development. I trusted that the doctors knew a lot more about child development than I did and my son turned out to have moderate Autism. He missed out on critical help that he could have received had I been more adament about testing him for Autism much earlier. Kay is already receiving a lot of the services he missed out on, so I know we are ok there. I just want to be certain that we have the correct diagnosis. She has possible TSC according to the diagnostic criteria. I'm ok with whatever the diagnosis happens to be, I just want to know it's the right one.
I have been trying to get on your blog to subscribe, but I have been having trouble. I signed up for the account, but the login isn't working. I'm going to try it again today :)
Shanna,
Your kids are lucky to have a mom who is willing to fight for them like you do! We know our kids better than anyone; it is hard for me because I trusted the doctors for the proper diagnosis. But after this whole journey, my gut is the best indicator ;)
How often does Kaylee get therapy? So far, Charlie gets OT and PT weekly, and he will get another eval in a few months to see if he needs more.
Take care,
Molli
My name is Melissa Dunn and i would like to show you my personal experience with Topamax.
I am 34 years old. Have been on Topamax for 4 weeks now. week 1- 25mg in PM, week 2- 50 mg in PM, week 3- 75mg in PM----still at 75mg and is working well. in the 1st week I had 4 migraines and I have not had a migraine since and I am doing well. I think I found a good dosage. I have lost 1 lb a week on Topamax, but that is not a negative side effect for me. I was on Relpax before and it worked well, but with insurance 6 pills were $30 and I was going thru 6 pills quickly.
I have experienced some of these side effects -
soda taste bad, tingling in toes and fingers, tired
I hope this information will be useful to others,
Melissa Dunn
Topamax Side Effects
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