Difficult Decisions with Medications

It sounds like you have been through a lot with your son's condition. I am not sure how open you would be to try something different to help his situation besides drugs, so I am going to post the some advice that you can either use or at least look into before going any further.

I have a friend who has 3 children - 2 of which had siezures as a result of adverse vaccine reactions. They had been down the typical traditional medical route and were getting nowhere, except that their children's conditions were getting worse.

My husband is a natural healthcare provider, specifically trained in chiropractic, naturopathic, nutritional counseling and detoxification. He first evaluated the girls situations (hair analysis, etc.) to determine their toxicity levels - and found out they both had mercury and aluminum levels off the charts. He began them on a schedule of regular chiropractic adjustments, completely changed their diets (cut sugar, fruit, and grains) and started them on detox programs (ionic foot baths to get heavy metals out as well as activated charcoal and then adding a prescription grade probiotic in their diets as well as a really good fish oil - Nordic Naturals).

The thing you have to understand when you are trying to detoxify anyone is that it is kind of like an onion...toxins have built up layer upon layer and when you detoxify, you slowly peel the layers away - this results in things seeming to get worse before they get better - what is happening is that they are 'retracing' and once they go back through it, they won't go through it again.

End result: one of the girls after about a year of this is now siezure free - her last siezure was on 7/7/07 and she is literally a different child.
The other child was older and had sizures literally every hour...now she has an occasional siezure once a month or so...and is still working toward full recovery.

If you would like more information, please contact me. My husband consults many people over the phone - If you are looking for an alternative solution...it's not as easy as popping pills, but wouldn't it be worth it to have your child healthy again?

Just trying to help!
C.

Hi L.,

What I have to say can't fit in this screen. But we have been helping many families get educated.

With your permission I would like to schedule a time to talk so that I can share with you a little bit about what I know.

Feel free to read my file. I have been through hell and back! I was mis-diagnosed for 15 years! I have 17 allergies to prescription meds and have been in remission for over 6 years with one tiny relapse that lasted about two weeks. By accident, I got involved in a company for my son & ended up changing my whole family's life.

Education is key.

I have done the reseach. I have 8 years of it. Article after article. Your call won't obligate either one of us to anything. It may be something or you may not, but know this we have many autistic, astmatic, diabetic children that are getting back their lives by something as simple as switching products in there homes and eating healthier.

J.

You don't say what type of Autism Spectrum disorder your son has, but it sounds like maybe a Sensory Processing Disorder?

There are behavorial modifications that can help so that your son doesn't need to take medicine. My daughter has SPD, and while she didn't hit others, she'd hit herself or have screaming fits and fight/flight scenarios or throw herself on the floor when she had a fit.

I assume he's in first grade; is his school aware of his diagnosis, and are they helping? Occupational/Physical Therapy does wonders, and so does taking him to see a Childhood Specialist. We discovered our daughter had SPD when she was 5/in Kindergarten, and she saw a Childhood Specialist for a year. Made all the difference in the world. Most insurance companies will cover a number of visits per year.

There are also some wonderful books:

The Highly Sensitive Child by Elaine N. Aron, PhD (many children with SPD/Autism-type disorders are also highly sensitive)

The Autistic Spectrum: A Parent's Guide to Understanding and Helping Your Child by Lorna Wing, MD

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD) by Lucy Jane Miller, PhD, OTR

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz, MA

I hope you find some of these resources helpful. We discussed medications with the Childhood Specialist, and she, like us, was not enthusiastic about medicating. It took a while with behavorial modification, but my daugher is now 8 and she's never been medicated.

A.

I'm sorry your little guy has to go through all that! wow!

In thinking of my own children and medications I always think first (or if meds haven't been working), can any of these issues be addressed through diet or holistic means? if at all possible I try that route...just because- as your described, medications can be really harsh on kids....I guess if I put myself in your shoes and this were my child, the only medication I would focus on would be the one for seizures because that scenario can be life threatening, and I would explore other options at length to address the attention issues as much as possible without meds until the seizure thing was well under control.....I worry that my kids bodies don't really know what to do when a whole slew of meds are thrown into them

Good luck to you and your son!

I agree that seeing a Pediatric Neurologist is a great idea. There are some great people at the Noran Clinic in Minneapolis. I have also found that my local pharmacist can be a great help in understanding the risks and benefits of medication. I would suggest not stopping or starting anything new (even holistic or over the counter meds) without consulting with someone. Children's brains are so precious. I also totally believe in a mother's intuition. Follow your gut. If something isn't right, get answers and demand straightforward talk. Good luck and God bless you all. You'll be in my prayers.

Big hugs to you, it must be very stressful trying to figure out what to do. The difficult thing with medications and dosages for children is that is a very inexact science and doctors really don't understand most of the side effects and general effectiveness in children. There is a very good Frontline (I believe) program about medications for children. You might want to watch that.

I don't have specific advice about the medications he is on. However, I do think it is important for you to do your own research and find out everything you can about the drugs, what clinical trials have been done on them indicating there effectiveness for his conditions (doctors often prescribe medications for conditions for which the medication has not actually been proven to work). Don't just take the doctor's word and look for second and third opinions whenever possible. You probably already take copious notes whenever talking with his doctors but if you don't for some reason, I would start (this was critical when we were dealing with my mother's cancer).

Have you researched experts on his seizure disorder? Who in the country is specializing in treating it and researching treatments? Contact them anyway you can to seek advice and information.

Good luck and good for you to start questioning the huge quantities of drugs being prescribed without the desired results.

There are two different non-pharmacological treatments...
Ketogenic diet & Vagal Nerve Stimulator. These may or may not be options for your son, but have worked for many patients that I have taken care of. You can google them or mention them to your neurologist. Good luck!!

L.,

My daughter was diagnosed with epilepsy at age 3. The first medicine she was put on was Depakote. I can honestly tell you I was ready to take that medicine and dump it down the drain. My daughter became sick, she was hungery so she would eat but when she ate then she would puke. She had horrible mood swings as well as hitting, kicking, flying into a full rage, being so tired she couldn't get out of bed. I questioned her doctor time and time again and he told me it wasn't a side affect of the medicine. It came to the point when we either had to do something with the medicine or she was going to get kicked out of preschool for her behavior. We did some research and found a new doctor. Dr. Paine really listened to our concerns and switched her medicine to Keppra. Within two weeks she had no behaviors, no vomiting and her seizures became controlled, something we hadn't had with the other medicine. I would ask your doctor to change med's and if he won't then you need to find a different doctor. You are your childs advocate and if you are frustrated I can bet he is to. Don't get discouraged maybe he will still grow out of it, and if he doesn't it will just take that right medicine to make both your lives better. I would also recommend hooking up with the epilepsy support group, they can hook you up with lots of info and people who are going threw what you are and they are great about pointing you in whatever direction you need to go. If you want that info let me know and I will give it to you. It will get better don't give up.

Hi L.,
How frustrating this must be for you and your son. Do you have him on a vitamin? I have both of my kids on a really great vitamin called Mighty Mins. There is also a study associated with the vitamins with regards to behavior. If you are interested in more information about these, feel free to email me at ____@____.com son has Down syndrome and we've found with many issues there is many pieces to the puzzle and the hard part as a parent is figuring out what the pieces are.

Good luck to you and great job being so on top of things for you son!

K. S.

L.,

Has your son been seen by a neurologist for the seizure disorder?

I my first seizure 7 1/2 yrs ago (I am 29) and to this day we don't know what started them. I was brought to the hospital and since than I have seen my neurologist 1x a year and had my medication level checked. I never saw a regular doctor for this.

I would highly recommend seeing a Neurologist for the medication issues with your son. Mine is great and located in Maplewood. If you want more information on him, please let me know...

Dear L.-
I am sorry to hear about your son, I have a friend in Madison, WI with an autistic son. She started doing liquid nutrition and has seen amazing results.
Here is the letter that she wrote back in 2005:
February 9, 2005

When our son Evan was 2 ½ years old, he was diagnosed with autism. Knowing
nothing about autism, our search for knowledge began. We explored in-home
Applied Behavioral Analysis (ABA) therapy. We worked extensively with
speech therapy and we tried alternative therapies. All these therapies
helped us learn how to deal with Evans' behaviors, but nothing we tried
addressed the underlying cause of why he reacted as he did. We never knew
what triggered his out burst of anger and aggression. Screaming, throwing
anything within reach, and slapping were all common occurrences whenever he
didn't get his way.

It's been almost 2 years since we introduced Evan to Body Balance, a liquid
whole food supplement. The benefits for Evan as well as our family have
been dramatic. Our family has a life where we no longer live in fear of the
phone ringing saying there's been a problem with Evan at school. For Evan,
what are most dramatic was his digestive problems improved almost overnight.
Diarrhea, foul smelling stools, and excessive gas has almost been
eliminated. His hyper-sensitivity to textures and his compulsive obsession
for smelling everything and everyone no longer exists.

Although Body Balance is not a cure for autism, his quality of life has
improved dramatically. Evan still has autism but without the aggressive
behavior. He went from being in a classroom with a one-on-one aid and
frequent time outs, to being integrated into the educational classroom
within 8 weeks of taking Body Balance. He has not had a behavior at school
or home since Feb. of 2003. Last year Evan received a certificate for the
most improved child in the entire 4th and 5th grade. Needless to say, I
cried through the entire ceremony. If there is anyone out there with a
child experiencing similar patterns of behavior, I would love to talk with
them and share my experiences with them.

Body balance has done amazing results with many other autisitc children and so many other health disorders.

please go to my site to check out body balance and give me a call and I can put you in touch with the mother that wrote this letter. She loves telling her great results and hopes she can help others.

Thanks-
T. Bloom
###-###-####
www.momstayhealthy.com

My son was diagnosed at age 3 with general seizure disorder with absense seizures...he was put on Depakote-I hate that medication and would not recommend it for a child. My son became very violent-he would hit me, he squeezed a one year olds head at daycare (the child was ok-and his daycare was more worried about the change in my son than anything) and his speech became very slurred-to the point where I had difficulties understanding him...he was only on this med for 3-4 months and I kept calling his nuerologist who FINALLY switched him to a different med-but by this time I was fed up and had an appointment with another pediatric neurologist in Sioux Falls, SD-and she wasn't even sure my son had HAD a SEIZURE! She said that there was also a possiblity that the medication had "triggered" ADHD in my son (which now I am thinking isn't the case-he has great concentration skills just has high energy)...So try a new Dr. You didn't say how often your son has the seizures-just a curious question? If you want you can email me back with questions!
A.

L.,

I am so sorry to hear about your son. I am not speaking on experience as I am typing this email. I am only offering what could possibly be suggestions. These are things that I think I would do if I found myself in you situation. I absolutely hate to put my children on medication. I also hate to hear about other parents having such hardships when it comes to this agonizing decision. Have you tried chiropractic care for you son? I think it is a very helpful tool in keeping healthy. I am not sure where you live, but I know there are many practicing chiropractors whom have had special training in helping children. Have you tried to take a look at his diet to see if there are any triggers there for him? I have three children and one of mine is very sensitive to sugar and other things. They trigger behavioral problems sometimes. I sincerely feel for you and your family. I think when it comes down to it you have to listen to your own mother's intuition even when it does not agree with what the doctor may tell you.

S.

PLEASE CHECK OUT THESE EXCELLENT REFERENCES:

www.safeminds.org/mercury/ Please read this article.
www.upledger.com Look into craniosacral therapy and seizure treatment. You may need to call and speak to someone directly.
www.tacanow.org Info on the gluten-free and casein-free diets for Autism. There is a plethera of information on this diet and treatment of Autism. One article I read in the past year stated that the gluten and casien in wheat-family and dairy products actually cause Autism patients to produce opiates (or opiate-like drugs) within their own brain/body. Perhaps the production of these self-manufactured "drugs" within your child's body are actually causing him to have the seizures?
www.buyactivatedcharcoal.com There is a book called CharcoalRemedies.com Very useful website for treating all sorts of ailements including drug overdose (may be vital to your cleansing your boy's body of the prescription drugs he's been on).

God bless!

You mentioned that your son was just diagnosed with autism--have you looked into therapy options yet? ABA can do a lot to help with the attention issues you are having without the use of drugs. My son also has autism and our psychologist recommends that we do everything we can through behavioral interventions before trying meds as there are always side effects and these can be more severe in children on the autism spectrum. If you need more information about the autism component of your son's behavior, feel free to contact me.

Good luck!
J.

Hi L.
Your questions focused on medication, however, I would encourage you to check into the Waldorf Schools in the Twin Cities. You could Google "Waldorf Education Autism"." There are 600 Waldorf schools in the world, and three in Minnesota. My children go to the Spring Hill Waldorf School in Excelsior and we have several autistic children at the school. Because of the school's artistic approach to education and it's holistic approach to healing the children, the children with autism have been able to come off of their medications and are excelling beyond imagination. The several autistic kids (I can't tell how many because I can't tell the difference between our students with and without autism!) are not labeled as "problems", but are cherished by the faculty and fellow students as kids with amazing gifts. It's a whole new way of thinking L., but it might be the answer you're looking for. I hope you'll check it out!

I have not had a child with seizures, but I have been a CPA for a few. I never had to make the med decisions, but I know what you are talking about. I can't even imagine going through it with my child!

A friend of mine went through the same thing you are going through. Her son started having seizures around 2 years old. They went through the meds, but she hated it, and she tried something else, with no doctor support, and it worked! Her son is seizure free! Just with diet. No more meds.

http://www.adventuresinbabywearing.com/2006/05/full-story...

It wasn't easy, but it worked. And she would be more than happy to privately email with people about it if you have questions. She is wonderful.