Well we're now on the maximum dose of Keppra and Yusef is still having 0-2 seizures a day. I've been in constant communication with the Dr.'s office and he wants us to come in sooner than was originally planned. So Tuesday we'll go in and discuss what he wants us to do.
I'm a little ticked off at the Dr., frankly. When I was there last week, we dicussed the treatment plan and what steps we would take if this med didn't work. He said we could add in another med, I think it was Zonegram. I fully expected him to call out a script for this, but instead he didn't want to make changes in the medication, and just wants to see us in his office. I guess I'll find out more on Tuesday.
I'm nervous because I don't know what he's going to say that's any different than what we discussed previously.
I've posted a video of a baby having infantile spasms if anyone's interested. It's not my Yusef, sorry I can't figure out how to post my video. I can't get my video to save on my pc so I can publish it. If anyone has any ideas or advice, please post.
Sometimes infantile spasms are misdiagnosed or overlooked, so if you have any suspicions about your little one you should call your pediatrician right away. It's also a good idea to video tape any unusual symptoms of behavior if you can, so your pediatrician will know exactly what's going on.
9 comments:
Thanks for sharing this. I hope you and the doctor can figure out how to help Yusef!! Not sure what type of video camera you have but the flip video is relatively inexpensive and hooks right up to the pc and it's very clear and easy to use. I know they sell them at Target. These spasms are very small and would be kind of hard to catch so again thank you for sharing the video!
Im so sorry to read your little one is having spasms I do hope that he outgrows them soon and you find some meds to control them. It is so hard to see our little ones in pain.. especially our special ones.
I am happy to see another Muslimah blogging that has a child with DS. My son Umar is 16 months now (our 5th)and has DS.
I am soooo sad! These little ones suffer so. I hope they figure out what is wrong.
Hi Adrienne--thanks for your comment dear. unfortunately my camera doesn't plug in directly to the pc. I'm still trying to figure out how to convert my disc which is in ISO format into a format I can save on my hardrive. It's all so techie...
Nzingha--mashallah, so good to see another Muslimah blogger too! I hope to get to know you and your little Umar soon.
Hajar--Thanks so much for commenting and caring so much for my little man. Jazakallah.
Hi, found your blog thru another mom of a child with DS. My son Noah, with DS also had IS...and we went thru so many meds to try to control them. What ultimately worked for us was the ketogenic diet. He started the diet June 24 at almost 10 months of age...and had his last seizure just 5 days later. He remained on the diet for 6 months and after a trial period (he was sick and in the hospital so was out of ketosis) we all realized, the seizures were not coming back.
Noah is now 8 years old and is the joy of our family...well, one of them for sure LOL!!!
Feel free to email me...cmyflowers@aol.com
Dearest Stephanie...salam alaikum,
Insha'Allah, little Yusuf will be better than o.k. I hate to think about babies in pain, I pray for your family.
[a sister and also a seizure sufferer].
Making duas for you and little Yusuf.
oh my, those little spasms looks so scary for the baby. But not so scary as i would have thought them to be. How patient little ones are.
a great blog sis x
Subhanallah, that's so hard to watch. I hope it gets easier for your child and that you and your husband find strength and retreat in one another.
Hi cindy and thank you so much for your input. I'll have to email you cuz i'm not sure what a ketogenic diet consists of. Right now he's just on formula and a little cereal so I don't know if it applies, but I'll definitely look into it!
Salma,Nzingha,firdous, hagar, and perplexin texan--Salams and thanks so much for stopping by. please keep my little one in your duas inshallah.
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