I am thinking of starting a family...

Posted by melissa , Jun 07,2001,08:46   Archive
My husband and I have been thinking of starting a family and I have many concerns as you can imagine. Does anyone have any info or comments about this? I am 31 and have had BEB for 3 years now. I get shots about every 3 or 4 months and am on cyproheptadine.
I am also concerned with the disabiltiy part of it if I need to go off the made... Does anyone have thought on that??

Thank you for your help. I hope every one of you is blink free!! :)

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Re: I am thinking of starting a family...

Re : I am thinking of starting a family... --- melissa
Posted by Kelly Saffell , Jun 07,2001,12:47 Top of Thread Archive
Hi Melissa. Nice to meet someone my age. I am 32 and have had BEB/Meige for 6 years. I developed it at 26 after I had my first baby. We researched and interviewed both doctors giving botox and my ob called in a specialist to determine if botox would be harmful. They decided no so I got pregnant again and had a healthy girl in Feb 1998. I received 3 sets of injections during my pregnancy but none until after I was 10 weeks. I was not on any other meds at the time. I also read an "Ask the Doctor" from the newsletter before making a decision answered by Dr. Jankovic in Houston answering the question "Is botox safe to use during pregnancy?" The reply was "Ten women world wide have done it with no harmful affects but it is not recommended. I guess I became the 11th! It is a VERY personal decision and was one that took us a full year to make. My daughter is now 3 and other than ear infections has been perfectly healthy her whole life. We did decide not to have any more children and permanently fixed that problem! We feel blessed with 2 healthy girls. I will tell you that I felt alot better during my pregnancy but that I worsened quite a bit after Cory was born. No one knows why or if it is related.

Kelly in Dallas

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Re: I am thinking of starting a family...

Re : I am thinking of starting a family... --- melissa
Posted by Moderator-JB , Jun 07,2001,13:29 Top of Thread Archive

Wow! Big question! I'd suggest writing the BEBRF office for any information they might have. Perhaps they can steer you in the best educated guess direction.

The best of luck in your searching for answers.


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Re:BEB and families.

Re : I am thinking of starting a family... --- melissa
Posted by Shirley-Arkansas-USA , Jun 07,2001,20:58 Top of Thread Archive
Hi Melissa,
I'm 49 & my 2 boys (young men) are now 18 and 20. I developed BEB with meige & apraxia about 2 1/2 years ago. My two sons are priceless to me. My sons & my husband are my life. I had mild and annoying symptoms for about 6 mths before things got drastically worse over a period of weeks. I went from mild symptoms and wondering what was wrong with me to not being able to walk down a hallway without my fingers trailing the walls. I was unable to drive, read, watch TV, do the shopping, prepare meals & had to quit my job that I loved. I spent a summer on the couch or on my bed, primarily crying & just being extremely depressed. I came to terms with things long before my symptoms improved.

Everyone is different with this disorder. It is a chronic & very often progressive disorder. People do rarely go into remission. Some people are able to continue work and are well controlled on medications and Botox. It is a well known fact that stress makes this disorder worse. They do not know what causes it, so treatment is for symptoms. There is no known cure. Even surgery is a rather radical treatment & not a cure.

There are no easy answers for you as you are well aware & you are very young yet. I can only comment on your post in relation to my own symptoms & capabilities. I literally could not have done it. The one thing that I have said from the beginning & continue to feel blessed for is that my 2 sons were 15 and 18 when it started & it did not start when they were very young. My youngest son, who is now 18 has attention deficit disorder. He has done very well but life and school have not been easy for him or the family. He was very active as a child & I never knew what he was going to do as he didn't really know either. His childhood was indeed stressful for the entire family. I wanted children much more than my husband did, but was able to talk him into having a child & then the 2nd one. We are a very close knit family. If my BEB had begun before I had children, with the degree of severity with which it did, I would never have had children. I would have been unable to care for them. I have had difficulty taking care of myself for the past two years. My sons were not small children when this hit & I am very thankful for that. I have no idea if things will get better or worse for me. None of us can predict the future.

There are many questions you need to ask and discuss with your husband. You need to talk about things like if your symptoms should worsen, what you would do. Do you have a good & close support system with family that are close in case you can no longer drive? Have you tried being around children for extended periods of time to see if your symptoms worsen? Are you financially secure in case you can no longer work? Don't include friends in this list of people that can help out as when problems arise, they don't always stick with you no matter how close you are now especially if things turn out to be real one-sided.
You need to understand that if your symptoms worsen that you may not be able to be the primary care-giver(I could not have been). Is your husband able or prepared or does he want to do this if you cannot?
Life is a gamble and we don't know what cards we are going to be dealt. Thankfully this disorder strikes most of us when we no longer have to make decisions that you are being faced with.

I'll give you an example of something that has happened to me. My youngest son was involved in a car accident a year ago on his way to school. It was not his fault. An elderly lady ran a stop sign when she hit the gas instead of the brake and ran into the side of my son's car. No one was injured. A gentleman stopped and called the police for them & my son borrowed his phone & called me. He explained to me what had happened and asked me what to do. I could hear the stress and panic in his voice. I told him to just wait for the police to arrive & to just follow their instructions. He was less than a mile away from me. I called my husband & luckily was able to reach him & he said that he would get there within 15 min. I called neighbors to see if someone could take me the short distance so that I could go & be with my son. No one was home. I could not drive. I thought about walking, but that was an impossibility, also. It was one of the worst hours I have spent. My son needed me & I was unable to help him. My husband called me when he got back to work & said that everything was fine and that Scott was able to drive the car on to school although it did have quite a bit of damage to the car. I had always been able to take care of my kids & felt totally helpless in this situation. Scott knew that I wouldn't be able to come but he called because he was scared & didn't know what to do. I helped him in the only way that I could & that was by depending on others.

One more & I will quit-this is way too long, anyway.
I was walking down my hallway, carrying a metal mailbox that I was going to take to the backyard and paint. My eyes briefly closed on me halfway down the hall & I kept walking as no one was in the hallway.
My oldest son came around the corner from the living room & realized that my eyes were closed & tried to get out of my way but was unable to completely dodge me. I rammed him with the mailbox in his chest. He tried to act like it didn't hurt & kept saying that it was his fault for failure to yield to a person with their eyes closed & I kept saying I was sorry. It did hurt him and I cried like a baby because I had hurt my son because of this damn disorder. The one and only thing that I really can't handle with this is when it hurts my family in some way. I don't think that I will ever be able to deal with that.

Melissa, your symptoms may never get any worse. No one can predict that. Your symptoms may even go away or we may find a cure. I know this post is pretty one sided but I can only give you the side from my perspective. You can take it or leave it. Children are very precious things and a gift to us. I do understand your desire to have a family. I've been there and I know where I am now.

Shirley in AR. crying now and loving my family more than ever.

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Re: Re:BEB and families.

Re : Re:BEB and families. --- Shirley-Arkansas-USA
Posted by Kelly Saffell , Jun 08,2001,14:51 Top of Thread Archive
I definitely agree with Shirley that it is hard. I had to quit my job in Dec of 1999 when my girls were 4 1/2 and almost 2. I was unable to take care of them while I was struggling to work and drive 2 hours round trip. Staying home has made a big difference to me. I have no family in the state of Texas and my husband was my only support. He is awesome-Thank goodness!!! I knew things had to change when I saw a family picture that my 4 year old had drawn in preschool. She drew her mom with no eyes. I had never even told her about my beb but she knew I was sick. My life is soooooo much more complicated than my friends and I have to admit that I envy them being able to drive their kids to the zoo. My symptoms are such that I am able to care for them with limitations but I have to take it easy on the driving, reading, etc.

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