SO SCARED....took avonex and 1st 8wks of pregnancy and he's 2 now

[angie73]

I'm really very scared! My son is now almost 2 1/2, he has an appt. Tomorrow morn with his pediatrician. My husband and I noticed about a month ago a small lump next to his eye like a small knot like he banged the corner of his eye on something no bruising. We just thought he banged it. Well about a month later my husband noticed it it again, this time it protruded a little, I felt it and noticed it seemed larger....
Naturally, I go straight to the internet for probable cause..
Nothing really was coming up until I changed the wording some... pediatric nasal cavity cancer... there's names but I can't say them let alone spell them...
I read every article I could, the part that scares me is he has had symptoms of this since he was a baby on and off stuff, here lately there have been more symptoms that I ignored or passed off as growing pains, teething pains, not feeling good etc....
All I can think of is that I took avonex for the 1st 2mos of my pregnancy and the fact its been known to cause cancer! Cancer does not run in my family so all I can think is that if this is whats going on with him that the avonex in my body during the most critical development stage of my pregnancy caused my son to be an incubator for thism..... I am going crazy inside my head and I pray to god its just that, normal crazy thoughts everytime something goes wrong..... this time these thoughts feel different.... does that make sense, is that even possible? Iam so worried and so scared...

[angie73]

WHY'D I EVEN BOTHER STARTING A NEW THREAD! THOUGHT FOR SURE I'D GET SOME KIND WORDS OF ENCOURAGEMENT !!!!
SOMETHING SERIOUS LIKE THIS AND I POUR MY HEART OUT HOPING FOR A LITTLE COMFORT AND SUPPORT FROM THE PEOPLE THAT CAN REALLY RELATE, HAVING MS, TAKING MEDS, FINDING OUT YOUR PREGNANT! SCREW A LL OF YOU CUZ THIS AIN'T NO SUPPORT GROUP I WANT TO BE PART OF!!

[Thinkimjob]

You must be so worried.
Google is not the place to find answers. Used to be medical students who were so frightened by all the information they had, that they imagined the worst was happening, every time.
Now we've all got instant access to that information, and it's not always a good thing.

Type in "headache", add other fairly minor symptoms, put two and two together and you'll google up a brain tumour in no time at all.

Try not to worry, turn the computer off; the doctor will know what's wrong. I'm sure it's not going to be as bad as you fear.

All my best.

[tspaulding]

I'm really very scared! My son is now almost 2 1/2, he has an appt. Tomorrow morn with his pediatrician. My husband and I noticed about a month ago a small lump next to his eye like a small knot like he banged the corner of his eye on something no bruising. We just thought he banged it. Well about a month later my husband noticed it it again, this time it protruded a little, I felt it and noticed it seemed larger....
Naturally, I go straight to the internet for probable cause..
Nothing really was coming up until I changed the wording some... pediatric nasal cavity cancer... there's names but I can't say them let alone spell them...
I read every article I could, the part that scares me is he has had symptoms of this since he was a baby on and off stuff, here lately there have been more symptoms that I ignored or passed off as growing pains, teething pains, not feeling good etc....
All I can think of is that I took avonex for the 1st 2mos of my pregnancy and the fact its been known to cause cancer! Cancer does not run in my family so all I can think is that if this is whats going on with him that the avonex in my body during the most critical development stage of my pregnancy caused my son to be an incubator for thism..... I am going crazy inside my head and I pray to god its just that, normal crazy thoughts everytime something goes wrong..... this time these thoughts feel different.... does that make sense, is that even possible? Iam so worried and so scared...

I just read that a European study was done and CRAB drugs do not increase cancer, so who knows. But I would not worry just yet and I would consult w/ a doctor or dermatologist.

RRMS dx 1995 on Gilenya 19 mos

[KatieAgain]

Of coursed you are scared Darling. Googling is not going to help one bit though. You are doing the right thing by taking him to the doctors today.

Good Luck, and let us know how the appointment went.

[hunterd]

I cannot imagine the worries that you are going through.. Dr. Google will scare the daylights out of anybody, no matter what the reasoning for looking. You are doing exactly the correct thing by taking him to see his pediatrician. Please keep us updated.

[alishape]

This is a scary thing to think. Of course with your son being the center of your universe, it's easy to let your imagination run wild.

You remember when you found out you might have MS? If you're anything like me, you googled and googled. The most frightening things I found have not happened to me yet, probably not you either. The same is probably true in this instance. Whatever is going on with your son, he'll need a sane mommy to help him through it.

We're all thinking good thoughts for you both. Take care.

[Seasha]

Dear angie! I'm so sorry about what you are going through and the fears you must be facing.

I am sorry too that no one answered your post right away. This message board has volunteer moderators (who also have MS) that try to get posts out in a timely fashion. There are seldom ones (and also posters) who are on late at night.

I agree with everyone here to not look to the internet, but rather to your Doctor's advice. And please keep us informed as to what comes of this! We DO care!!

Hugs and prayers to you

[mjan]

(((( HUGS ))))

Angie, I am so sorry for ALL you and your family are going through. Hope you have a good pediatrician to help you through all this unknown.

I never took Avonex so I cannot help you there. And I am sorry you did not get the responses you were hoping for, but I agree, it may have been the time of night you posted this.

Nonetheless, we're here for you and will walk this journey along side you! Please keep us posted. You can also contact me via email if you want to.

Use your faith..allow it to guide you through this time.

Warmly, Jan

[babymonkey]

I am sorry, I would have replied to you post last night, but I was signed off before your post.
I know exactly how you are feeling and my heart aches for you. I, under the advice of my doctor, was on Rebif until my 3rd trimester of my second and final pregnancy. I wasn't really concerned at the time, but during my 32 week check-up things went very very wrong. I had measured quite a bit smaller than my previous visit and my OB was very concerned. She sent me for an ultrasound at the hospital instead of doing in her office. She met me at the hospital within 10 minutes. I was so scared that I didn't call my husband or my family.

Then the chaos began. I watched my doctors face turn white as she turned to me and said "I don't understand" and she walked out of the room. She came back into the room with 3 other doctors. As I lay there thinking my baby was dead the doctors continued to talk among themselves, but I could understand a word they said.

After what seemed to be hours, though was only about 5 minutes, my OB turned to me and said she was having me moved to the OR for an immediate C-section and the hospital staff would notify all emergency numbers I had listed. I could only got out one word 'why'. She then told me that my amniotic fluid was so low that it could not be measured and the babys heartbeat was diminishing. She went on to say that I was not leaking amniotic fluid so she did not know why this had happened.
The next thing I remember was my baby being rushed away. I did not even know that my husband was rushed by my side during the last moments of the C-section until I heard him say "Oh my God, what is wrong with the baby's head!".

I was then given a drug to put me to sleep and moved to recovery, then to my room which I would stay in for much longer than I had planned. I woke up and no one was in my room, not my Mother, Father, Husband, my 8 year old daughter, my sisters, grandparents, NO ONE!!!

I pressed the button to call a nurse. The nurse came in and I asked her about my baby. She just told me she would have someone come in to talk to me. Then I really freaked out. I was screaming, crying, then screaming more. I tried to get up an alarm went off. They had me on a monitor to tell them if I tried to get up!!! Several nurses came in, every one of them was crying. They gave me something to sedate me and one nurse stayed in my room, she laid down with me and cried. She told me that all the nurses were given strick orders not to give me any information and she cried more. I asked her over and over if my baby was alive, she would not reply, just cry. So what else could I believe, my baby was dead.

I asked her where all my husband and the rest of my family was. She told me that there were about 30 to 40 people standing at the NICU windows praying. That was her way of telling me my baby was ALIVE without putting her job at risk!!!! She told me she would go let my family know that I was awake and that I needed answers that she couldn't give me.

At this point all I knew is I had given birth to a 32 week preemie that had been in critical condition while she was in my belly. What went wrong? Why? Why? Why?
I was alone, crying, screaming in agony.

My sister finally came in. She just laid with me not saying a word just tears. After several minutes of just holding each other, I asked my sister to please just tell me what is going on with my baby. She cried and I could hardly make out what she was saying. After she calmed down a bit, she told me that my baby girl was very small and is in NICU with the normal preemie issues eating, breathing, etc and very unstable. I was so scared. I was again screaming one second and wailing out loud the next.

Then the bomb went off. There's more, my sister said, its bad, really bad she said as tears rolled down her face as I was hyperventalating. My sister then became very focused trying to be strong enough to tell me another horror on top of my already critical baby girl.
I was told by my sister that not only was my new baby girl fighting for her life due to the issues she faced in my womb with drops of amniotic fluid, being born premature, but during my C-section there was an accident. WHAT??? What kind of accident can there be in a C-section??? What!!!

My sister went on to tell me that when my OB began the incision to get my tiny girl out, not only did she cut through my uterus, but my baby as well. My baby had been sliced through her right temple. The cut was over an inch and a half and 3/4 inch deep. My tiny princess had almost bled to death before they got her out of me and did not know she had been cut until my husband screamed 'What is wrong with her head!!'.
So to make an already long story shorter, after many blood infusions and set back after set back. I have an eleven year old now healthy beautiful daughter.

I will forever live with my decision to continue the Rebif and wonder if it caused my amniotic fluid to deminish and cause the nightmare of my daughters first 11 weeks of her life.
So, with ALL that being said, I totally understand how you are feeling and will continue to feel. Every single time something gets off track with my daughter, I wonder if it was the Rebif. I blame myself.

I am here for you if you'd like to talk. Please keep me informed on your baby and you.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

You and your family are in my prayers!!

[Kimba22]

Angie,

Sending out my prayers and hoping for the best for you & your child. I hope your son's pediatrician can find the answers. I can only imagine how scared you are.

Please keep us updated. We DO care and want to offer our support. I'm sorry you didn't get an answer quickly. I guess the 'right' people just didn't see your post in time.

Take care.

[aitch10]

I'm so sorry for everything you're going through.

And please don't take the delay in responses personally. This is a slow board and it takes a while for people to get to posts.

Hugs and hope for you and your family.

[HETA78]

I'm not a mother, nor do I plan to become one but I freak out sometimes over residual side effects of DMD's, so I sort of get what you are saying.

My only advice is to try not to worry. That will not fix anything and as we all know, excess stress and anxiety does nothing for MS. If anything, it can exacerbate your symptoms. Also, lay off the Google if you can! Like someone implied earlier, too much time on google and WebMD and you'll be convinced of worst case scenario.

I pray for you and your little one that this is something minor. I hope that you update us in the future.

[babymonkey]

Angie,
I have not been able to get you out of my mind since I read your post.
Please contact me through my email or post a reply and let talk to me girl!!

Hugs & so very worried,
Marci

[bree2013]

I'm really very scared! My son is now almost 2 1/2, he has an appt. Tomorrow morn with his pediatrician. My husband and I noticed about a month ago a small lump next to his eye like a small knot like he banged the corner of his eye on something no bruising. We just thought he banged it. Well about a month later my husband noticed it it again, this time it protruded a little, I felt it and noticed it seemed larger....
Naturally, I go straight to the internet for probable cause..
Nothing really was coming up until I changed the wording some... pediatric nasal cavity cancer... there's names but I can't say them let alone spell them...
I read every article I could, the part that scares me is he has had symptoms of this since he was a baby on and off stuff, here lately there have been more symptoms that I ignored or passed off as growing pains, teething pains, not feeling good etc....
All I can think of is that I took avonex for the 1st 2mos of my pregnancy and the fact its been known to cause cancer! Cancer does not run in my family so all I can think is that if this is whats going on with him that the avonex in my body during the most critical development stage of my pregnancy caused my son to be an incubator for thism..... I am going crazy inside my head and I pray to god its just that, normal crazy thoughts everytime something goes wrong..... this time these thoughts feel different.... does that make sense, is that even possible? Iam so worried and so scared...

Angie,

My thoughts and prayers are with you and your baby boy. Please know there are a lot of caring people here. As others have stated, the wee morning hours aren't as busy and no / few responses shouldn't be construed as "not interested" or "uncaring".

I have three children and have been through scary times with them over the years. Sometimes too much research can be make us crazy.

Please keep us posted -- we do care!

Bree