While traveling this path for the past four and a half years, I have tucked away in my mind these gems. Some of these may be repeat. Some may be new. They are based upon my experience. I will add more to these as I think of them.
- This one is the hardest – however difficult, try not to be sad at all when you are with your child – your being happy is extremely important to his/her wellbeing.
- Follow your instinct – yes, the neurologists are going to say something and you will follow what is said initially for lack of a better choice. However, you are the one spending all that time with your child and can monitor/observe/follow way better than someone else when it comes to the medication. Do what you think is right.
- Always believe in your child – don't give up that hope nor let that doubt creep in. Let your child know that no matter what, you believe in him/her and he/she is going to succeed.
- Explore the different things your child may like to do – well, maybe he/she is struggling academically; maybe your child doesn't like to do sports – you don't have to just because everybody is. Each child has at least one strength – find it and encourage it. Don't emphasize the negatives because when your child is already struggling with something he/she is very aware of it.
- If you have one or more children who are doing fine, don't ignore them/take some time to make them feel really special too; at the same time they need to be aware of their sibling's condition no matter what the age. Their sibling love will carry them through.
- If there is a specific diet for one child or more, don't deprive your other children of their favorite foods. Do it in a special way/do it such that the child on the diet doesn't feel deprived.
- Always inform people dealing with your child proactively about his/her special needs/concerns/health issues. Be upfront and it will help your child. This is particularly true for parents like me coming from a diverse cultural background - this is not culturally the done thing, but try and come out of that shell because what needs to be foremost in mind is concern about your child's wellbeing.
- I also feel strongly about not involving other parents/kids just because my child is on the diet. He has been trained to say no to the foods he cannot eat; he has packed cookies/candy and brought them home and given them to his sister. I will give him something instead - either a toy or something else that he treasures.
4 comments:
Thank you for the encouraging words. I think your ideas run true for any parent/ child relationship, whether it's a case of epilepsy or something more mild. It's important to validate, educate, and inform those around you that it's OK to ask questions, and be afraid, as long as it's present in the room and not hidden. That way we can all help each other.
So very profound.
I'm sure this is very heart wrenching for you to write, but I think you are doing a fabulous job! I wish your son and your family good health!
I love your 'some gems' post. I love lots of your posts actually! You are an inspiration to all parents who feel that dietary changes will help a child with epilepsy. Thank you.
I know a long time has passed since your son's brush with seizures. However, I thought you might be interested to read about the following 'epilepsy diets', which echo some of your findings with your son, and which are purported to help relieve epilepsy. It has taken me months and months of research to find all this stuff. And, amazingly, some of what I have found out is helping my DS! I hope you don't mind me posting it on your blog, but if there are others out there who are on a similar path to us, as regards to the nutritional approach to healing a child with epilepsy, then perhaps they will be helped by some of this stuff too. Equally, if anyone reading this can add to this list, that would be great too! (if you don't mind this on your blog).
• Anti-inflammatory Diet
• GAPS Diet (Gut and Psychology Diet)
• SCD – the Specific Carbohydrate Diet
• GARDA Diet (Glutamate Aspartate Restricted Diet)
• Gluten-free casein-free diet (GFCF diet) or gluten-free dairy-free diet (GFDF diet)
• Oligoantigenic diet
• Dr Wilson’s Epilepsy Diet
• Paleo Diet
• Omega3 supplements
• No Deadly Nightshades Diet
• Coconut Ketones Diet (Dr Mary Newport)
• Ketogenic Diet
• MCT Diet
• Modified-Atkins Diet
I have learned more things from your blog now too! And will be trialing some daikon as a first step!
Thank you for continuing to share your journey and your findings. It is so nice to read of your positive successes - a true inspiration and encouragement.
Your children are very lucky to have a parent like you.
Thank you very much for your comments.
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