Re: Question abouty Xolair and pregnancy

[Guest guest]

Hi ,

Just thought I would let you know about my experience. First of all

I should tell you that I have been diagnosed with ideopathic

hypereosinophilia which basically means that my body produces too

many eosinophils for unknown reasons. Eosinophils are the white

blood cells that normally attack parasites. Allergic asthma is one

of my symptoms which is why I was qualified to take Xolair. It also

has the added benefit for me of helping most of my other symptoms.

First of all let me say that I credit Xolair with my being able to

get pregnant. Before Xolair I had several miscarriages and was told

by my doctors to stop trying because I was too sick. After being on

Xolair for only two months I was told I could start trying and two

months later I was pregnant.

As I just said, I was on Xolair for four months when I became

pregnant. Per all my doctors, (allergists, perinatologists,

pulmonologists, etc.) advice,I stayed on the xolair throughout my

pregnancy. I also stayed on all the other medications I was taking

(Advair, Flonase, medrol, ranitidine, zyrtec, and lexapro). My

perinatologists told me it was a bigger risk for me to stop taking

the medication and become ill than it would be for the baby to be

exposed to my medication. They also told me that they didn't think

there was much risk to any of the medications that I was taking. I

repeatedly asked about each medication I was on and was most

concerned about the Xolair. I was always reassured me that the

likelihood of any complications was extremely minimal. However, I

was not able to find another woman who had ever been pregnant while

taking this drug. I just wanted to hear from one other person and

found it frustrating that I couldn't find anyone. That's why I feel

compelled to share my story with you.

They tell you that during pregnancy your asthma will either get

better, stay the same or worsen (brilliant, huh?). Mine worsened.

Actually all of my symptoms worsened and I had to stay at a high

level of medrol (prednisone). High doses of medrol cause me to have

terrible mood swings and being pregnant with all those additional

hormones certainly didn't help. This is why I was taking lexapro (an

antidepressant). I was also very worried about this, but was assured

on numerous occassions that it was perfectly safe.

I developed gestational diabetes, most likely due to the steroid

use, but was able to control it with diet.

I asked about withdrawal for my baby and was assured there would be

none from any of my medications.

My baby boy was born four weeks early, but not small - 7lbs 11 ozs.

His large size most likely due to the diabetes/steroid use. Although

steroid use can theoretically cause the baby to be small, my doctors

told me that they often saw the opposite.

He had low blood sugar and problems feeding, again likely due to the

gestational diabetes. He was also jaundiced probably because he was

early. But he overcame these mild problems. Other than that he was a

beautiful baby and I could not have been happier.

We took him home, but soon noticed he was EXTREMELY irritable. The

slightest noise practically made him jump out of his skin. We were

all walking around on eggshells. Although he wasn't my first baby,

I figured all babies are different, this one was just

very " sensitive " .

The second day I had him home it was becoming obvious to all of us

that something was wrong. He would have these frequent

little " fits " . His arms and legs would move in a rhythmic motion and

his head would turn to the side. It wasn't consistent though,

sometimes his left side, sometimes the right. His fists would

clench and open. It was weird, but not REALLY obvious. The " fits "

would last anywhere from 10 seconds to 45 seconds. I took him to my

primary doctor the next day (a Monday) and he really listened to me

instead of treating me like an overemotional new mother. We stayed

at the doctor's office until the doctor could actually witness one

of these fits. They happened at about a rate of 3 an hour. He said

the baby was having seizure activity.

They sent me home and told me they would get ahold of the

neonatologists at one of the hospitals and tell us what to do.

Finally they called back and told us to take him to the emergency

room at one of the hospitals with a NICU.

We stayed overnight in the pediatric section and the next day they

started doing tests including video-taping him while he was hooked

up to an EEG. They confirmed the seizure activity and we started

doing other tests including an MRI. After his MRI they rushed us

over to do a CT scan (not planned) and they wouldn't tell us why.

Back in our room they nurse was EXTREMELY nervous and could not wait

to get out of there. Finally, a resident came in and asked me if I

knew what was going on. I said no. He said my baby had a brain

bleed. He didn't speak English very well, but he said it was " very

bad " . He refused to answer anymore questions. I won't give you all

the details, but it was an awful experience. It was the worst

experience of my life actually. Finally after demanding to talk to

someone else, the chief resident came and explained a bit more.

They said they had found a significant bleed in the baby's brain and

that was causing the seizures. He couldn't say how bad it was, but

it seemed to be " very bad " . We would have to wait for the pediatric

neurologist came to hear more. They moved us up to the NICU and we

waited six hours for the neurologist. I swear to god it was so

awful, I remember almost nothing.

When the neurologist finally got there, he looked over the MRI and

CT scan pictures then he told us that it was not as bad as we had

been led to believe. He said it was not in the part of the brain

that the other doctors believed and it was not as severe as they had

thought. There are four " grades " of brain bleeds and this was

a " grade 2 " , only the second worst. He said he believed there would

probably be no long-term effects. Thank God. Still, it was a bleed

and it was what was causing the baby's seizures. The question was

why was there a bleed?

They did several blood tests and talked to doctors all over the

place. Their final conclusion was that the Lexapro I was taking

caused the seratonin levels in his blood to be altered and the

normal trauma of delivery caused the bleed. They also said he went

through withdrawal from the lexapro which is why his reflexes were

so incredibly exaggerated. They said they DO NOT believe any of the

problems were related to Xolair, but again they said it's so new no

one can be totally sure there are no adverse effects on the baby. I

was also told by my perinatologists that lexapro would not harm my

baby and would definitely not cause withdrawal. And they were wrong.

My baby's case was reported to the FDA and used as a case study at a

conference. The neurologist also told me he would be publishing the

case study, but I do not know where yet.

Now my baby is fine. After being on phenobarbitol (sp?) for about 2

months the bleed absorbed and the seizures stopped. He had

withdrawal from the phenobarbitol but not as bad. At his last check-

up with the neurologist he was doing well. He goes back again next

month for his six month check-up and I believe he is hitting all his

milestones just fine and there should be no long-term effects.

I know every situation is unique and your circumstances probably are

not the same as mine. I just wanted to share what happened to me.

I do not believe Xolair had any effect on my child other than

helping to keep me healthy. I WOULD recommend stopping any

serotonin-altering medications, though.

Good luck to you when the time comes!

(This is a long post, I know, and I apologize. I wanted to get the

whole story down without leaving out any important details.)

-- In , " G. " <rrgrimes_u3@y...>

wrote:

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> I was wondering if anyone knew about Xolair and pregnancy. Not an

issue now, but in the next few years it might be for me.

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