Friday, January 22, 2021
Thursday, December 10, 2020
We were asked in our Periodic Paralysis Network Support Group today if anyone with Periodic Paralysis (PP) has ongoing digestive problems. My answer is YES; I do have severe gastric/digestive issues, as do many of us in this group with Periodic Paralysis. It seems the PP can affect our digestive tract. We can have issues from acid reflux, constipation and gastritis to paralytic ileus* (malfunction of the muscles in the intestine) and the acidity issue can also be related to PP because we tend to have chronic metabolic acidosis of which acid reflux can be a symptom.
I have ended up in the ER/hospital twice in the past three years with digestive issues and am going through the cycle again right now. Over one year's time, my daughter was in the hospital 9 times with the longest stay 40 days and she lost 90 pounds during that year, dealing with paralytic ileus and Cyclic Vomiting Syndrome (CVS).
We control our acid reflux with a pH balanced diet which keeps our acidity levels in balance. Diet and managing our potassium/electrolyte levels is especially important for those with PP for many reasons, to include managing our digestive tract, from beginning to end.
*“Paralytic ileus is the occurrence of intestinal blockage in the absence of an actual physical obstruction. This type of blockage is caused by a malfunction in the nerves and muscles in the intestine that impairs digestive movement. Causes of paralytic ileus include electrolyte imbalances… "
Thursday, November 12, 2020
It has been 7 years since we posted our first Blog Article!! Since that day we have had over 156,497 total page views!! We now have nearly 180 articles!!
Monday, August 31, 2020
Wednesday, August 19, 2020
Those of us with Periodic Paralysis are each totally individual and unique!!
Monday, August 17, 2020
Saturday, August 15, 2020
Wednesday, August 12, 2020
For all of the parents who are sending
their children with PP back to school, this may be helpful. It is written for
those in the USA and to help to outline and write either an IEP (Individual
Education Plan) or a 504 Plan (both legal and binding documents in the USA). I
am a retired Special Education Teacher.
(This may or may not be applicable at this time in dealing with Covid-19.)
I wrote this for a parent awhile back...I have meant to post it as a Blog Article, but have never quite finished it before...I hope this can be helpful.
IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis at School
Each plan is individualized to your child's needs, accommodations and restrictions. The biggest difference in them is how it is funded and who will be in charge of the plan.
The best place to start is to have a copy of the information about your child’s form of Periodic Paralysis and how it affects him or her. No one will know what it is or be able to understand it without some background information.
Next, you will need to come up with a list of the needs, accommodations and restrictions, etc that are necessary for your child. You can do this with your doctor or come up with them and then ask the doctor to put them on his/her letterhead for you. The school will have a better time believing and following through this way. This should include the issues related to his heart, breathing, blood pressure, cognitive issues, muscle weakness, and/or paralysis as the potassium shifts.
How to recognize an episode? What to do in an emergency? Teachers and nurse should be trained to recognize signs of an episode and know what to do.
Triggers and how/what to avoid? If any type of exercise causes an episode, then he or she should not have PP, or can he do some simple things like walking, but no running or swimming?
Food restrictions, or does he or she need to eat and or drink something every few hours?
Does he or she need more time to get from class to class? Does he or she need help to get from class to class? Should he or she have a friend with him at all times in case he or she goes into an episode? Elevator rather than walking up and down stairs? Can walk from class to class but not out to the football field?
Due to the time length of episodes or abortive attacks, does he or she require more time to complete assignments? Or does he or she need home schooling/instruction from time to time? Do the district days of absences allowed need to be changed? Days added for him?
Does he or she need adaptations such as using a computer rather than writing with a pencil or pen or doing his or her work orally or verbally?
Can he or she carry his or her books from class to class? Too many books at a time? Can he visit his or her locker more often or leave books and supplies in classroom with the teacher?
Does he or she need a special chair or wheelchair at times in which he or she can recline due to weak trunk muscles?
Does speech/talking in the classroom need to be limited to short periods of time due to weak mouth and throat muscles?
Eyes/eyelids may become too weak to read, etc. Can lectures be recorded or can a friend share notes?
Another important issue to consider is whether the child's symptoms may require him or her to remain at home permanently using home schooling, or attending school remotely or possibly a combination of the two.
**Purchasing a copy of our book, What is Periodic Paralysis? A Disease Like No Other and completing your child’s individual, important information related to Periodic Paralysis at the end of each chapter is an excellent way to share the data and instruction for the teachers, nurses and administers. This is why this book was created, for sharing and teaching others about Periodic Paralysis.
The following are example pages from the book:
What is Periodic Paralysis? May be purchased at Amazon:
Friday, July 31, 2020
Our features and services providing Awareness of Periodic Paralysis include:
The Periodic Paralysis Guide And Workbook:
A Bill Of Rights For Periodic Paralysis Patients