Infantreflux.org | Just came back from 3 month EEG and

This topic has 16 replies, 1 voice, and was last updated 15 years, 11 months ago by Anonymous.

Viewing 15 posts - 1 through 15 (of 17 total)

1 2 →

Author

Posts
November 13, 2008 at 1:37 am #58621

Anonymous
Inactive

Our daughter was diagnosed with Infantile Spasms. We were prescribed vigabatrin and we start that tonight.

I’m at a loss. This is very hard to take and the long term prognosis isn’t very good.

I had to share. Grandma is here and doing the night shift – I think I’m going to take a long hot bath and have myself a good cry while I still have the opportunity to do so.

Grandma goes back home tomorrow.

November 13, 2008 at 7:11 am #58622

Anonymous
Inactive

Oh Jennifer I am so sorry to hear this! I am not familiar with the diagnosis but I hope there is something that can be done. Keep us posted!

November 13, 2008 at 8:27 am #58626

Anonymous
Inactive

I’m so sorry Jennifer. I’ll be praying for you and Jenna. I have heard some babies have good success on the keto diet.

There is a mom who used to post on this forum. She found out that her son, Hunter, had infantile spasms as well. Her name is Dawn (Dawnie311). If you do a search some of her old posts might come up. She now posts on another forum http://www.parent-2-parent.com/forum under the same name. You can usually find her in the children’s medical matters or chronic health conditions forum. If you’d like, I can see if she can come on and pm you here. Let me know.

HUGS.

November 13, 2008 at 9:24 am #58627

Anonymous
Inactive

I am so sorry and please know that we are here for you to listen any time…….. I don’t know anything about the diagnosis, so I am NO help there, but just wanted to offer my support.

November 13, 2008 at 1:56 pm #58642

Anonymous
Inactive

Oh Jennifer. I am so sorry the hear this. I just did a quick goggle search and honey you deserve a nice long cry… Are they thinking this was caused b/c of the rough delivery and everything Janna went through? Is there anyway you can do a malpractice suit to the hospital? It sounds like they may be responsible for this. I agree with Lori that I would look into the Ketogenic diet, I used to know tons about it when I was practicing but I have lost most of my knowledge on it b/c I haven’t been using/researching it anymore. Good Luck and feel free to come to us for support at anytime.

November 13, 2008 at 3:58 pm #58649

Anonymous
Inactive

Are they thinking this was caused b/c of the rough delivery and everything Janna went through?

They seem reluctant to really talk about probable causes unless it has to do with a metabolic disorder or problem with the placenta and we’ve heard nothing further about either test. What we do know is that the date of incident has been pinpointed to Labour and Delivery via her first and second MRI scans.

I hope the hospital review I’d requested will reveal more if not we have been considering hiring legal counsel. The problem is that these kinds of suits in Canada are pretty grim as there has to be definitive proof of what lead to the hypoxia and that it was caused by negligence and who caused the negligence. A balance of probabilities just wont wash.

Can you start a Ketogenic diet on a 3 month old?

Jsquared2008-11-13 16:03:32

November 13, 2008 at 4:01 pm #58651

Anonymous
Inactive

I would call a lawyer anyway to see your rights… I know here in ct we have a 24 month statute of limitations to file, and even though it was one more thing to do it is working out to our advantage…. might be worth the conversation…

November 13, 2008 at 4:26 pm #58653

hellbennt
Keymaster

November 13, 2008 at 6:21 pm #58665

Anonymous
Inactive

I don’t know too much about keto diets. I figure that you can’t start them until older, but I don’t know.

There was a recent suit here in Toronto where a new mom was suing the hospital for allegedly sending her away while she was in labour, causing her to have her baby in the car on the way home from the hospital. I don’t know what came of the law suit b/c I think it was determined that the hospital followed the right protocol. BUT this mom then notified the media and the story definitely got some attention, and hopefully a good outcome for the family.

I would personally try to get a lawyer on your side if you can, if that’s the route you’re looking at. The hospital risk management team who conducts the review typically tries to support the hospital and their actions while trying to minimize costs to the hospital. Under PHIPA (the privacy act in Canada), you have the right to request your entire hospital record via the health records department. You might want to have that information and show it to a professional.

HUGS.

November 13, 2008 at 7:17 pm #58666

Anonymous
Inactive

I actually am an employee of LexisNexis Quicklaw and can do some legal research on this myself – which is nice. I just haven’t been able to find the time or emotionally bring myself to do anything exhaustive.

I did begin at one point when I was concerned about CP but after reading one case halfway through, I couldn’t really handle it emotionally.

November 13, 2008 at 8:32 pm #58676

Anonymous
Inactive

my first thought with the ketogenic diet was for you to do it while bf… but then I remembered that you have lost your supply. So what I would then do is research is heavily, maybe get in touch with the person Lori mentioned and see when trying to transition to that would be wise/practical. You may even want to try to find a dietitian who specializes in peds and see if they have any pointers as well. I wish I could help, but I am way out of the loop on this one.

November 14, 2008 at 9:01 am #58692

Anonymous
Inactive

Jennifer, we can talk via e-mail if you like and want to get into details. I agree that emotionally, I spent lots of time with tears in front of my computer but didn’t have the wear with all to do it myself. The lawyers had me write the history (very emotional) and then some other things, and they have handled things since. WE have made it over one HUGE hurdle so that is awesome outlook for Carter at the moment. We have a ways to go, but after getting through teh initial, it has been pretty much not our issues to deal with, they handle it for us, and now we know Carter will have what he needs if he can never move out, get a job of his own, etc… and if he outlives me, etc……..

Let me know if you want to speak further monty123 @ sbc global . net (no spaces)…

November 15, 2008 at 7:20 am #58723

Anonymous
Inactive

I am so very sorry to hear about this. I don’t even know what to say other than you and Janna are in my prayers!

November 15, 2008 at 1:39 pm #58728

Anonymous
Inactive

Jennifer, Hugs, hugs, hugs. I wish I were near you so we could cry together. Definitely look into suing the hospital. If nothing comes out of it, at least you tried. We’re always here for you!

November 15, 2008 at 8:46 pm #58732

Anonymous
Inactive

Jennifer..I am so so sorry! I will pray for you guys. Please keep us updated! Hugs! Hugs!
Author

Posts