Hi all,
I want to say thanks for this site. I live in a smaller community, and while we have an Epilepsy support group here, it doesn't have many parents of young children affected by the condition.
Our daugther was diagnosed with Infantile Spasms (IS) at 7 months of age, and we've been on a roller-coaster ever since. We're tried a 1/2 dozen different meds (we're currently on valproic acid and nitrazapam with reasonable success), plus the "extra" meds to treat side-effects, such as the HCTZ to treat hypertension when she was ACTH. She's been diagnosed with developmental/cognitive delays and speech delays, and has recently failed her M-CHAT screening for autism and we're waiting to get referred to the University Clinc to get MDOS screening. She just turned 2 years old at the beginning of May.
We've tried naturopathy and homeopathy (which probably has had the best success of all the stuff we've tried) and have discovered that Abby has high heavy metals, some of which is attributable to vaccination (we're had hospitalizations due to seizures after the last two rounds of vaccines, so we've quit doing those), but some of unknown origin (such as antimony).
We've struggled with increasingly difficult behaviour in recent months (it was reassuring to read that we're not the only ones who struggle with this!), and as we're expecting another child soon, I'm concerned about coping with a special-needs child and a newborn.
You are all so strong. Thanks for your support.
Carolyn
Strength in numbers
Hi Carolyn --
Congratulations on the new baby! That is so exciting. I totally understand your concern about coping, but what's that old saying about how to lift a cow? You begin by lifting a calf and keep practicing every day until it's a cow.
I botched the saying I think, but the gist of it is that, after the new baby, it'll still be one day at a time.
And you got that right about us 'all' being so strong. That's why they call these things support groups, because, without the support, I'd fall right over
Hi Carolyn, I am so sorry
Hi Carolyn,
I am so sorry to hear of your struggles. We have very major troubles with our daughter's seizures too. Has your daughter had chromosome testing? We did not know for awhile what was causing the seizures for Ashley but to this day the drugs are not working and we are still very uncontrolled.
Congratulations on your new little member on the way. You will do great! I have a 5yr old and an 8 month old and it has been one of the best things for our family!!It helps take your mind off of some of the problems you are dealing with and is truely a blessing. Did you have testing for this pregnancy?
Hang in there you will do fantastic!
Cindy
Welcome Carolyn!
Hi Carolyn,
Arlene Martell here publisher of this site. I want to welcome you and thank you so much for sharing your story with us!
Many of us have been in your shoes and would like to offer you some advice and some ideas that you can look at to help your daughter.
My son Adam also developed behavior issues on the medications and learning was at a stand still. I also had a newborn when Adam was completely out of control so I really encourage you to do as much as you can right now. Adam also had autism so I know exactly what you are going through and I hope your daughter tests negative for this.
I do however, really want you to know what I did to treat Adam. Today he is drug and seizure free and most of his autistic tendancies are gone because of a few alternative treatments. We also talk about these treatments quite a bit in the chat forum and I also wrote a book on the subject that is FULL of detailed information. You can find out about the book and read my story.
This is a really long email so print it out - I think I have some information you need to know!
First of all I must emphasize that I am not a medical doctor - just a mom who did a ton of research trying to help my own child. I have tried many things without success and a few things with huge success and I am learning more all the time. I can only pass on the information that I have and ask that you do your own research as well to become more familiar with your options. Unfortunately, the doctors try the drugs first and do not step outside the box unless forced to by the parents. You need to be aware of your options and back it up with some research.
Time to start asking questions and demanding alternatives if what they are doing is not working. It is hard to stand up to the doctors, but a childs whole outcome depends on it. The reason that I am so adament about getting the information out there is because I waited too long before I took action and my son did end up with some brain damage and I know now that it didnt have to happen and I dont want it to happen to other kids.
I recently read about infantile spasms and want to share what I learned. With these seizures, her little body will kind of "drop forward" Her head and shoulders will drop and move forward together. This is the most common type of seizures in infants. What concerns me is that they have tried so many drugs. What I learned is that if one drug does not work, there is only a 15% chance that the second drug will work and the percentages go down with ever drug after that! SO why do the doctors keep pushing the drugs! Frustrates me to no end.
I hope to encourage you now about Infantile spasms.
I have just finished reading another book. It is the same one that I read 11 years ago and has been updated with lots of wonderful information. It is called 'The Ketogenic Diet.. A treatment for children and others with Epilepsy". (FOURTH edition) It was the book that helped to change our lives 11 years ago. Adam was on the Ketogenic diet they mention for 5 years and this IS what stopped his seizures!
You didn't say how old your daughter was, but perhaps you could contact the John Hopkins University seizure clinic in Baltimore where they have a special seizure clinic and really know about the diet.
Here is what the book says about infantile spasms:
pg 66 - Since children with infantile spasms or Doose syndrome, as well as those with Lennox Gastaut pattern, may be more likely to respond to the diet than to medication, we are more likely to accept them for the diet earlier in the course of their epilepsy.
pg 50 - Children with infantile spasms are the most difficult to treat... We found that nearly half of 23 children with infantile spasms were treated with the ketogenic diet had a 90% or better response, improvement on EEG, and better development by 6 months. Children treated with the diet before 1 year of age or before 3 medications had been tried did better. With this success, perhaps the diet should be attempted as the first treatment for spasms.
Please do some research here. Also have the child tested for yeast overgrowth.
Lastly - if you are available on June 4th, join me on my teleseminar with Dr. Swingle. He treated Adam for the autistic tendancies and the behavior and the results were amazing.
You can register here:
http://epilepsymoms.com/teleseminar.html
I really hope I have provided you with some directions to start looking in. I will pray from your family and daughter. Please send me an email again when you have done some research and keep me informed of the progress.
I am really happy to have you join us. Please keep in touch and ask lots of questions.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Welcome!
Hi Carolyn!
And welcome to the forum. It's a great place to go when you need a little support or have questions that other moms and dads might be able to answer. Parents who really care about helping other parents and learning more about epilepsy and related disorders.
I'm so sorry to hear about your little one. It sounds like you have been through a lot in only a short period of time. My son Adam was diagnosed with childhood epilepsy at age four. The increasingly difficult behavior is a very common trait. With Adam, some of it was related to adverse side effects to the first medication that he was on; some of it had to do with his age. There are good days and then there are days when you feel like running away. Boy, have we all been there. And still are! Stay strong!
And please keep us posted.
Crystal