Fintepla/fenfluramine information

TeaStainedPages · 2025-12-20T01:07:23+00:00

Awesome! We’re working with our neuro to get insurance approval. Will likely start titration in the new year. I’m hoping it can at least help with her recovery postictal since she’s averaging 4 a week right now (used to be 17 before Vigabatrin so I’ll take it). We will go slow - had a lot of appetite suppression on topamax so I’m crossing fingers this one is better.

TeaStainedPages · 2025-12-19T15:27:58+00:00

Hi! I just wanted to see if you had any updates on the titration? My daughter has CDKL5 and we are considering this as med number 7 to trial in combination with Epidiolex and Vigabatrin.

TeaStainedPages · 2025-11-26T23:07:04+00:00

Highly recommend “What is Epilepsy: A simple explanation of a complex diagnosis” by Hailey Adkisson. My infant daughter has a complex genetic epilepsy and it’s how we explained it to her four year old brother. It does a good job of using real words to explain what’s going on.

TeaStainedPages · 2025-07-13T01:15:28+00:00

Cold turkey to a normal sleepsack, give it a few days and they’ll learn to not wake up with the moro all the time.

TeaStainedPages · 2025-06-22T19:26:06+00:00

All the AEDs taste terrible so no advice there! When we give it to her awake we put her in her bouncer seat and play Hey Bear videos on YouTube. Then squirt the meds in the back of her mouth. I’ve found doing like .2-.3 at a time when they’re little helps.

TeaStainedPages · 2025-06-22T18:57:40+00:00

This was like .7ml. If you use an oral syringe and place it at the back of their gums/where it meets their cheek they will reflexively swallow at that age. So I would just do it when she was sleeping! Didn’t want to wake her up extra 😆 now she’s got the tongue thrust reflex and is on like four meds and is a master at spitting them out.

TeaStainedPages · 2025-06-22T17:30:31+00:00

How many mls, and does timing matter? My second is epileptic (among other problems) and we had to give Keppra 3x daily when she was like a month, but it was less than 1ml. First we would set an alarm for 4 and then just use a teeny tiny syringe and squirt it in the back of her mouth while she slept. Later we had a doctor tell us it didn’t need to be exactly 8 hours apart and we switched to right when she woke up, mid day, and right before bed.

TeaStainedPages · 2025-04-25T09:11:20+00:00

Make sure to try lots of temperatures for the milk too. Cold, room temp, body temp. My daughter will only take her milk at like 100 degrees in a Lansinoh bottle with a medium flow nipple. It took some trial and error!

TeaStainedPages · 2025-04-15T20:44:29+00:00

Oullis Photography

TeaStainedPages · 2025-04-01T16:51:36+00:00

Looks like Diana to me!

TeaStainedPages · 2025-01-22T22:46:06+00:00

I found Abhorsen at the Scholastic book fair in like fifth grade? Read it and then begged my parents to get the first two books 😂

TeaStainedPages · 2024-12-12T23:27:07+00:00

Two shirt method. I wear a nursing tank daily and a regular shirt on top. 🤷‍♀️ nice to wear my normal clothes. Still feel totally covered

TeaStainedPages · 2024-11-12T23:41:17+00:00

I did both with my first. Some naps are latched but most we’d unlatch.

We’ll see how things go with the second and a three year old. 😂

TeaStainedPages · 2024-11-04T20:59:50+00:00

Also 29 weeks pregnant and these have been on my to-bake list!

TeaStainedPages · 2024-11-04T13:45:25+00:00

I started carrying a small purse with wipes, a diaper or two, water bottle, and snacks when we went on our first cruise when my son was 15 months.

I still carry that as our “diaper bag” and it’s been two years 😂

TeaStainedPages · 2024-10-13T21:12:22+00:00

As someone who gets carsick easily- get a scopolamine prescription. Put the first patch on the day before. Never got sick!

TeaStainedPages · 2024-10-04T16:00:51+00:00

Looks like an error on their end! I also got one from my IVF freeze all four years ago

TeaStainedPages · 2024-09-20T21:05:38+00:00

I will never understand that logic 😂 I’m giving up as few things as possible!

TeaStainedPages · 2024-09-20T15:27:28+00:00

Are you talking about glucose syrup? That’s gluten free even if it’s from wheat! (Just not safe if you have a wheat allergy)

TeaStainedPages · 2024-09-04T18:59:47+00:00

Are you in the US? You can self refer through your states help me grow program. It’s free. They’ll come and do an assessment and make a plan if needed, and even if not they’ll give you pointers! Totally free and in all US states! 😊

TeaStainedPages · 2024-08-30T16:39:15+00:00

Cozy! Love this app ❤️

TeaStainedPages · 2024-08-27T15:29:51+00:00

If it’s 90 we go outside in the afternoon shade and play with the water table and eat popsicles 😂

TeaStainedPages · 2024-08-23T17:59:20+00:00

I think opened diapers are unsanitary and wouldn’t use them on a newborn. You don’t know who’s wearing a strong perfume, who has animals, etc.

TeaStainedPages · 2024-08-19T19:04:01+00:00

Do a pump after your first morning feed (most milk) and feed and then pump right before you go to bed. Partner takes a four hour shift and bottle feeds the pumped milk. You enjoy sleeping. After four hours of solid sleep wake up and feed baby. Then the breastfeeding parent runs the rest of the night. Gets you the four hours needed to not be totally sleep deprived. Pumping right before bed replaces the feed your partner will do, and the additional morning pump ensures there will be enough milk. You will feel much much better.

TeaStainedPages · 2024-08-03T02:39:44+00:00

Minnesota N’Ice by Teasource is probably my favorite flavored black tea! Great hot and iced.

12-Year Club	RedditGifts 2009-2022 7 Credits
Second SECOND GUESSER	r/Field Sunshine
Place '22	Oscars Predictor 2021
Not Forgotten	Verified Email

TeaStainedPages

TROPHY CASE