ADVICE NEEDED! Drastic Speech Changes and Seizures Due To Cycle

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Question: I’m the mom of an amazing daughter with 2 chromosomal abnormalities which are a duplication on 15 and multiple deletions on chromosome 16. These lead to her diagnoses of hypotonea, moderate cognitive,speech and motor delays, and partial complex epilepsy and autism. She is experiencing her 2nd menstrual cycle. She is scheduled to have a preop appt 3-13 to have supprelin to halt her cycle for various reasons, but my main focus today is her decreased speech during the past few days while on her cycle. I just read that there is a proven link between hormones and seizures. She takes name brand Lamictal 25mg 10 chewables/daily. What experience and comments does anyone have pertaining to the drastic speech change and hormones/seizures? Waiting on neurologist to call now. Thanks for any advice/links/websites! We are in the Chattanooga Tn area. P.S. She’s 10 years old.

Ansers:

Jen E. There was a similar post over on the Unique (rarechromo.org) support boards not too long ago and there were several moms who said they had seen an increase in seizures and menstrual time. There was an additional med added but I can’t recall what it was.

Unique The Rare Chromosome Disorder Support Group

RARECHROMO.ORG
Tammy W. I haven’t had any experience with seizure activity changes and hormones. I did have a patient who’s seizure activity increased one to two weeks prior to getting sick with pneumonia. I currently have a patient on Lamictal that is three 150mg dissolvable tabs twice a day who is now 11. I have not noticed any speech changes in her, but she has not hit puberty as of yet. I work as a pediatric home health nurse.
Carole C. I use wild yam cream to help my child maintain her equilibrium through period time.
Andrea W. My girl doesn’t have seizures , but before I put her on birth control pills at age 13, she had terrible Pms in which she would become violent & nonverbal. The bc pills are a godsend.
Lydia B. When i stayed puberty I developed seizures. After tons of tedts dr determined it was hormone related. Meds helped, and hormone therapy to an extent. Seizures didn’t STOP until I had my second child.
Shelley P. Our daughter has Trisomy 15 with a deletion, dup, and translocation on the 15th chromosome. She is 12 and has started hormone replacement therapy and we wil actually begin meds in the future to produce a cycle. I will say in years past her speech would become more delayed after a seizure for a while.
Misty K. Yam cream is a natural hormone replacement, I believe for progesterone
Linda D. My daughter had an increase in seizures related to her period. The increase stopped after puberty. Her neurologist felt it was because she retained fluid and thereby her meds were diluted. They offered to add a diuretic for those times but we didn’t put her on it.
Rona M. Following. . My 12 year began seizures about 1 year ago. Dr.said hormonal changes. Seizures happen around full moon. She hasn’t started menstruating yet. Very cranky and her spasticity always gets worse.
Wade G. Some people might not approve of what we did with our special daughter. She has seizures, water on the brain, cp, neufibromasis. We tried stopping her period with several methods. They did not work. We found a doctor that gave her a hyster. before she turn 18. She did awesome after that. I am happy that we decided that because on our 25 anniversary she had a bad seizure that put her back in diapers. I would hate to take care of her period and diapers both. She is 35 yrs old now. I do not regret getting that took care of before she turn 18. She would come home with blood all over her pants.
Jena T. When my son started puberty, his seizure activity increased dramatically. We were told that this would continue until he finished puberty due to the hormone changes & brain changes during this time.
Beth B. My daughter use to experience an increase in seizure activity when she had her period. My gyn recommended a partial hysterectomy. She still has her ovaries but no period. She no longer has the seizures that use to accompany her period. Btw, we lived in the Chattanooga area at that time! Small world.
Dianna M. Also following. We have an 11 yr old daughter with CDKL5. Although she hasn’t started her period she is showing all the symptoms and has been regressing more frequent as well as very moody.
Debra G. My friend who has a seizure disorder when she has her monthly she seems to have more seizures than normal.
Sheila N. I am a peds PT and I have seen definite increases in seizure activity in girls when they get their periods. Boys not as dramatic when they hit puberty and not on a monthly basis like girls.
Deborah S. I have believed since the 1980s that there was a link between seizures and menstrual cycles. Neurologists back then said it was just coincidence or perception. It was a relief when the research came out demonstrating a link.
Brenda W. I am not familiar with your daughter’s specific diagnosis, so I cannot offer advice for what you are: going through. However, I can offer encouragement and endless hope and prayer for improvement. You are a mother who has done her research and is committed to her child; so continue on this path. You are the key to her positive outcome!
Lillian H. Following. I am wondering the same thing for my 13 year old daughter. I do see a increase of seizures and behavior before period. I’m calling obgyn now. What is yam cream?

ADVICE NEEDED for Special Mom shared from Facebook post #psnm00855

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ADVICE NEEDED! Drastic Speech Changes and Seizures Due To Cycle

Real Moms Sharing Their Experiences and Advice

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