Anyones child with Infantile Spams grizzly & unhappy All the time??

Leah - posted on 03/23/2011

Hi Kelly
Im not from NZ but im from Australia and my little man Jayden had Infantile Spasms ( he has grown out of them now)
The Doctors here took it VERY seriously and you should push it upon them to do so.. Jayden is now 17 months old and was diagnosed 5 days before his first birthday. In that time we have trialled 5 different medications, had 4 EEG's done a 24 hour EEG an MRI , Lumbar Puncture, countless bloods and urine, and he is now set to start the ketogenic diet in a few days.
My Jayden gets pretty miserable at times too, and for no apparent reason at all.. His development is in some what delayed, and i feel guilty to say, nothing like the stories i read on this website..( i really am blessed and so is Jayden)
Jayden is said to be around 6 months behind, in his cognitive development. his physical development is doing very well, however he cant string the two together.

Kelly i would try desperatly to find a paediatirc neurologist that will push and push for results as quickly as possible. and if you havent already, try get Honor into a therapy of some sort. Jayden has been referred to the Health Clinics here in Australia to do therapies to help with his development delay.
Its always worth a look..
Leah

Kelly - posted on 10/31/2009

Hi Ashley,

Man thats scary that your wee mans organs etc were shutting down. Did u get a diagnosis as to what was causing infantile spasms? What sort of brain surgery did he have? We are in New Zealand & things dont happen here like where youre from & that makes it so frustrating for me, I feel like the paeds arent worried about her or trying to help, theyve pretty much given up on her. The health systems really slack here.

Great to hear from you

Ashley - posted on 10/29/2009

hello my name is ashley and i am from ohio i know what your dealing with my son had infantile spasms started at month and a half. we went from med to med with nothing helping! my son could not do ANYTHING we changed doctors and 6 months later he was seizure free we had to have brain surgery but it was the best thing we could do for him at age 2 his whole body organs and all were shutting down and 2 years later at age 4 he can walk!!!!!! it is a very hard thing to deal with but my suggestions is go to cleveland clinic!!!

Kelly - posted on 10/29/2009

Hi Danielle,

Ive talked to you before on here I think, your wee girl London? Sounds like shes achieved a lot from then when I last spoke to you, yay! Honor sounds a bit the same not liking being moved, picked up etc. My wee girl is on Epilim & topamax but I think Paed is going to wean her off Topomax also & introduce Keppra, I really hope this works as the Epilim has helped her focus etc but hasnt stopped the spams. Honor can now get up on all fours & rock and sit with legs out the side holding her weight with her hand on the ground so we are really happy with that, she loves her feet so spends a lot of time in the jolly jumper. Still no smiles here really but the odd smirk & excitment & no using hands either. Hope all keeps on up from here for our wee darlings



Take care!

Danielle - posted on 10/27/2009

My little girl has been having infantile spasms since she was about 4 months old. She used to smile all the time until she began having them and now, at 2 years old, has just started to smile again but very rarely. She HATES being moved from one position to another- like from person to person or from a laying position to being picked up. We also tried the Keto diet with no results. She's currently on Keppra and Topomax and we are supplementing Carnatine into her diet. We will soon be taking her off of the Topomax because her dr and I both agree that the medication that has helped the most is definitely the Keppra. She can roll onto her side but not onto her belly, she can't support her own head, doesn't weight-bear through her legs, doesn't use her hands, and doesn't even babble among other things. She is grumpy most of the time. One thing that my daughter's neurologist talked to me about that could be causing her to be grumpy is her hips. Since she doesn't put any weight on her legs there's a good chance that her little hips are developing like they should. We just had some x-rays done and from what I could see things looked good but I'm certainly no doctor! We haven't heard any BAD news about them though so I'm assuming that's good.

Laura - posted on 10/18/2009

Quoting Kelly:

Hi Laura,
Thanks for your reply. Honor has been doing well the last few days, hardly any grizzling & starting to show signs of development, its awesome. She is on Epilim & toprimate at mo & stops phenobarb this wk, paed wants to put her on Keppra soon I think. Honor still has around 4 single spasms a day but has also been having 1 or 2 complex-partial seizures a day, not many but still enough to hold development up. EEGs show she has a lot of chaos in brain. Is your wee man still on ketogenic diet? Ive heard a lot of people using it on this site. Is it hard to do? What is your sons development like?? This has to be the most frustrating thing I have ever been through, so hard when shes crying because I just dont know what or how shes feeling. Look forward to hearing from you.

Hi Kelly,

Mason is still on ketogenic diet!!  It has helped him out tremendously!! Ketogenic isn't hard for us to do because Mason is 100% g-tube fed....he takes nothing by mouth....all meds and the ketocal formula go right thru his g-tube.....i think for kids that take food by mouth it is hard in the beginning until you get used to preparing their food....but like anything it becomes second nature! Mason's development is a newborn to 3 month old.....He doesnt respond or interact with our family......he has acquired microcephaly, seizure disorder, cortical blindness, severe reflux, 100%g-tube fed, nissen....he has never hit a milestone....no rolling over.....no talking....no crawling or walking.....he has had extensive genetic and metabolic testing done but everything has come back normal...I had a appt with his genetic Dr at Cleveland Clinic a month ago and was told at this point there is no diagnosis for him..........but he the the most amazing little boy! He has taught our family ALOT about enjoying every moment in life...............Mason has taught me that every day is a gift!!!!  Some days are better and easier than others of course :)

Kelly - posted on 10/18/2009

Hi Laura,

Thanks for your reply. Honor has been doing well the last few days, hardly any grizzling & starting to show signs of development, its awesome. She is on Epilim & toprimate at mo & stops phenobarb this wk, paed wants to put her on Keppra soon I think. Honor still has around 4 single spasms a day but has also been having 1 or 2 complex-partial seizures a day, not many but still enough to hold development up. EEGs show she has a lot of chaos in brain. Is your wee man still on ketogenic diet? Ive heard a lot of people using it on this site. Is it hard to do? What is your sons development like?? This has to be the most frustrating thing I have ever been through, so hard when shes crying because I just dont know what or how shes feeling. Look forward to hearing from you.

Laura - posted on 10/16/2009

my 2yr old has had infantile spasm since he was newborn.....cries alot.....when he was younger he used to cry for 10-12 HOURS per day...nothing we did would console him.....he is currently on phenobarbital, keppra, clonapin and diastat when needed....the biggest thing that helped him was putting him on the ketogenic diet.....we had results within 2 days.......I know ketogenic is hit or miss depending on the kid....you may want to research it....Mason used to have hundreds of infantile spasms a day and his muscles were so tight I had a problem holding him....used to be aching all the time and miserable....within a couple days of being on ketogenic diet he improved in his tone and also has very few spasms a day now.....