Parents with children with Special Needs

  • Thread starter Thread starter omniainbonum
  • Start date Start date
Status
Not open for further replies.
O

omniainbonum

Guest
My oldest child (7) was recently diagnosed with a form of epilepsy. The medication she is on has several emotional-type side effects causing her to lose patience and get angry very quickly and cry easily. Our life has changed a lot since the seizures started and she has started on her medication. It makes me so sad to see my sweet daughter acting out with anger in ways that I believe she would have never acted without the medication, especially against her younger siblings (we have talked with her dr’s, it is the medication that is supposed to harm her the least). Her IQ may go down as well, something that is frustrating her greatly (she loves school and school work, is very creative and a straight A student). Does anyone have any advice for families going through something like this? How to help her siblings? Any point of views that can help give us strength?
Seizures are very scary for her and for us. I have visited forums related to her issue etc online, but I usually end up more scared or depressed. Please keep us in your prayers!
 
(BTW, I’m a long time poster on here, but my user name was not anonymous, so I started a new one)
 
Well, I can try to help since my oldest son has had seizures and is on 2 medications.
Push with your Dr. to try new medicine that will not have such severe side effects. It may take some trial and error. Likewise don’t worry about having a loss of IQ. That only happens if she has long uncontrolled seizures. Likewise you may need to have an emergency stop seizure kit at home and school which is given rectally. Be trained on this, it isn’t hard. The best way to deal with your fears is to educate yourself on epilepsy. The more you know and understand the better you can respond when she has them. There are so many resources out there to help you. Likewise, have someone come from the epilepsy foundation to come to the school to train the staff about seizures and what to do. I did this with my son’s Catholic school and it was well received. Sadly a school’s first response is to just call an ambulance which if it is a known it is actually sometimes not helpful. first step is to get her on proper medicine. you will be ok, I’ll pray for you!
 
I am also the mom of a special needs child (autism spectrum) and can understand your feelings. My best advice is this: first, to realize that any journey with a special needs child is a marathon and not a sprint. You will need to maintain your stamina for many months and years to come. Second, carve out special time for each child to do something 1:1 so that he/she feels special. Third, try to find a live support group of other parents. This may best be achieved through your child’s doctor.

I will be the first to tell you honestly that having a special needs child can be all-encompassing and isolating. However, I was not nor should you be afraid to express fears, dislikes, etc. to your child’s doctor about your dislike of the side-effects. You have to be the voice for your child, the advocate, if you will.

Please feel free to ask more questions if you like.
 
Thank you both of you! Robwar, we do have the kit at home and at school and I explained to the staff at school how to use it. Thank you for the idea of having someone go to the school to train them as well.
90Domer, thanks, I like the idea of making sure I schedule 1 on 1 time with each child. I was trying to do that anyways since we have a couple of children, but I will be more vigilant to make sure it happens.
 
omniainbonum said:
Thank you both of you! Robwar, we do have the kit at home and at school and I explained to the staff at school how to use it. Thank you for the idea of having someone go to the school to train them as well.
90Domer, thanks, I like the idea of making sure I schedule 1 on 1 time with each child. I was trying to do that anyways since we have a couple of children, but I will be more vigilant to make sure it happens.
Click to expand...
God bless you, The kit is prescribed by the Dr. and I hope that you are seeing a pediatric neurological specialist. It is called a diastate. It is prescribed by a Dr. and to be used if your child has a seizure for more than 3 minutes. I know schools might be nervous about having it at the school but if they have a nurse on staff it shouldn’t be a problem. Also you should be able to find another set of medicine that won’t make your daughter so angry. You can PM me privately if you want further discussion.
 
omniainbonum said:
My oldest child (7) was recently diagnosed with a form of epilepsy. The medication she is on has several emotional-type side effects causing her to lose patience and get angry very quickly and cry easily. Our life has changed a lot since the seizures started and she has started on her medication. It makes me so sad to see my sweet daughter acting out with anger in ways that I believe she would have never acted without the medication, especially against her younger siblings (we have talked with her dr’s, it is the medication that is supposed to harm her the least). Her IQ may go down as well, something that is frustrating her greatly (she loves school and school work, is very creative and a straight A student). Does anyone have any advice for families going through something like this? How to help her siblings? Any point of views that can help give us strength?
Seizures are very scary for her and for us. I have visited forums related to her issue etc online, but I usually end up more scared or depressed. Please keep us in your prayers!
Click to expand...
What medication is your child on? What type of epilepsy does she have?

Are you seeing an neurologyst or a GP that works in the neurolgy dept? (we got caught by that one)

The loss of IQ can be associated with the medications, unseen seizures, and actual brain damage that is taking place during each seizure.

Our son had his first seizure activity when he was 3 years old, it started with his right eye “winking” once in the while. My wife saw it a full month before I noticed it. A year later he was having hundreds of myoclonic, Atonic, and one or two grand mal seizures a day. We finally started doctor shopping when the specialist at our hospital basically said what you see as his worst will become his best and his worst will get much worse. It took us a while to realize how woefully inadequate the treatment was at the childrens hospital we were going to (Children’s Mercy in KC) and we had made a huge mistake staying with them as long as we had.

If you have been told it is “Benigh Rolandic Epilepsy” and she will outgrow out without the doctor doing a full workup (video EEG, Hi Def MRI, etc…) then you need to find a new doctor.

There is nothing easy about it. Our younger son was an infant when our older son’s condition went bad. Both children grew up with epilepsy being the center of our lives until a few years ago. It isn’t fair to either one of them or us, but we have learned all sorts of things in the process like IEPs, the Keto Diet, how much Phenobarbital it takes to put a person in coma.

To ensure the diastat is used properly you will want to set up a medical IEP for your child.
 
  1. Try the Neways Products (minerals for your daughter’s brain and frees radicals and strengthens connections/wiring) - Neways products cured 3 x neighbours of mine of their cancer in all areas of their bodies with only 6 mths to live after their chemotherapy and radiation.
  2. All of your family sit in a quiet room with a candle and start Our Lady’s Holy Rosary, holding a set of Rosary beads each, taking it in turns to say the Hail Mary’s, Our Father’s, the Apostles creed, Glory Be’s and Hail Holy Queen the first evening picturing Jesus leaning over your daughter with His Hands totally curing your beautiful Daughter for Eternity. The next evening, pray The Jesus Rosary (5 Our Father’s with each of the Prayers in between) if you do not know all of these, look them up. Picture Jesus (all of you) leaning over your beautiful Daughter healing her for Eternity of the Epilepsy.
  3. Allow Jesus to work in your Daughters life to cure her for 2 months.
Please Dear Jesus Christ Our Saviour,
Could you please rid in entirety the epilepsy in this beautiful little girl’s body and expel the condition now and for Eternity, PRAISE be to you Dear Jesus Christ Our Saviour, now and for Eternity by all of Your children on Your Earth.
Amen,

Our Father who Art in Heaven,
Hallowed be Thy Name,
Thy Kingdom Come, Thy will be done,
on Earth as it is in Heaven,
Give us this day, our daily bread,
and forgive us our tresspasses,
as we forgive those who trespass against us
and lead us not into temptation,
but deliver us from all evil, Amen.

God bless your Little one and Family
 
Status
Not open for further replies.
Back
Top