Hi All,
I got a call from a mom who needs info. Her story is complex so I asked her
to send me an e-mail with all the pertinent details. I am at a loss…so am
asking for your wisdom. This is long… I have permission to post… Any and
all suggestions to all parts of this note will be appreciated –
Issues: Baby is having major issues with ABM. Those are described. Mom is
epileptic and is taking Zonegran and Topomax.
Down towards the end is a question on how best to ship breastmilk (her
sister will donate about 30 oz in a week). I’ll be looking through the
archives too but if there is updated info that would help. We’ll need info
on Zonegran and BF a newborn – we already know what Hale says – we want/need
other opinions – is it possible for it to be safe or absolutely not. I
know it is a lot…but, this mom really wants to breastfeed if possible – and
is looking for options…
Please respond privately and to the list…Thank you very much from both mom
and me…
Jaye Simpson, IBCLC, CIIM
---------------------------------------------
I have had Juvenille Myoclonic Epilepsy since I was 15 years old. I
currently take 100 mg of Topamax and 100 mg of Zonagran each twice a day. I
haven't had a seizure in a couple of years. I also take folic acid and a
multivitamin daily. I am now 34 years old. Our baby, William, was born
February 28, 2007. I was on these medications during pregnancy. I also eat
a primarily organic, whole foods vegan diet (although I ate a little fish
and dairy during my pregnancy and continue to do so ). Baby William was
born healthy with no complications.
I did a lot of research before becoming pregnant. Obviously, I was
concerned about potential birth defects, whether or not I could breastfeed,
etc. I have had these concerns ever since I was diagnosed with epilepsy. I
must take medication. Without it, I would have seizures every day (absence,
petite mal or grand mal). Before William was born, I was told by my
epileptologist that the benefits of breastfeeding outweighed the risks of
the medications that would be present in the milk. I also discussed this
with my OB/Gyn. She agreed and said it was up to me. I did research
online. The Epilepsy Foundation suggested breastfeeding. I know it’s best
for baby, so that was my plan.
The day after giving birth, a lactation consultant came to see me in the
hospital and showed me a copy of a book called Medications and Mother’s
Milk. She said the medications I take, especially Zonagran, were
contraindicated for breastfeeding. She said I should not breastfeed! I was
so upset! Why didn’t my epileptologist or OB/Gyn know this information? I
had already breastfed William within the first hour of giving birth and
throughout the night and was doing well at it. We continued for the first
week while we thought about it and made an appt. with a pediatrition. We
discussed the issue with her and after much deliberation, she said that we
really should err on the side of safety and choose to formula feed. I said
all I wanted was for William to be healthy – to do what was best for him.
So began our problems with William’s spitting up, vomiting, acid reflux,
fussiness and generally not feeling well.
When Will is not puking, crying or fussing and he is well-rested, he does
have times of happiness everyday. I just know he would be such a happy baby
if he felt better. Occasionally, he even has whole days when he is in
generally good spirits and doesn't spit up too much (just a few bibs and
burb rags), but those days are infrequent.
His peeing and pooping is normal (poops about 2-3 times per day. He is also
gaining weight just fine. He is a big baby at 15 lbs. for 3 months old. He
is in the 85th percentile. The doctor's don't seem to take his throwing up
seriously because he is gaining weight. I'm the one at home with him
everday while he barfs all over me and himself. He obviously doesn't feel
good. He has little bit of a scaly, patchy rash on his elbow and his
thighs, and in his neck crack (where the puke goes). It's obvious that the
rash in his neck area is caused by puke, but on his thighs and arms (elbow),
I wonder if it might be related to the formula/allergy/vomiting. It's
probably just heat rash or eczema or something like that.
Here is a list of what we’ve tried in order:
Week 1: Breastfeeding
Week 2-3: Earth’s Best Organic Soy Formula (we use Born Free Bottles)
Weeks 4: Earth’s Best Organic Dairy Formula
Weeks 5-Current: Enfamil A.R. (made for babies who spit up frequently) - we
get the 32 oz. ready made formula; He does better on ready made than on the
powdered formula. We have also tried Enfamil Nutramigen and Nestle Good
Start – The Good Start made him puke violently out his nose and mouth, cry,
shake and choke. He Hated the Nutramigen and still threw up. He only drank
1/2 bottle at each feeding even though he was hungry.
The pediatrician prescribed Zantac (didn’t help at all) and Prevacid, again,
no help. Ped also switched the formulas. No help.
We just went to a pediatric gastroenterologist. He prescribed the Nestle
Good Start and prescribed Prevacid again, but wanted us to administer it
differently – ½ tablet dissolved in 1/2 teaspoon water and given to him in
an oral syringe 1/2 hour before feeding. Very difficult to administer and
ineffective. I think it also made him feel worse.
We usually use about 3 bibs and 2 burb rags per feeding. He pukes
frequently throughout the day.
Will drinks between 4 and 6 1/2 ounces of formula every 2-3 hours, except at
night. If he slows down or acts disinterested, I give him the pacifier
instead, because I think overeating is part of his problem. He usually
sleeps about 7 hours at night.
He seems to do better when he gets a lot of sleep and is held/carried a lot
(which I do most of the time). He loves to be held close in an upright
position and sleeps well when swaddled. We hold him upright for at least a
half hour before putting him to bed to allow the food to settle and all the
burps and gas to get out.
I asked my sister who has a baby 1 month younger than Will to send me a 1
day supply of her breast milk. She is going to pump this week and overnight
it to me. Please let me know if you have any specific directions of how to
do this. I figured this would be a good test batch. If it works, we can
either:
a) Request a prescription from our doctor from the milk bank b) Ask my
sister for any extra milk she may have from time to time.
c) Get milk from a donor d) I could start breastfeeding again if we
found out that it is OK (I'm assuming that it is not OK).
Topamax makes me feel dumb, especially when I take more than 100 mg twice
per day. I have not had any troubles with the Zonagran. I have been on
each medication separately at various times. I used to take 150 mg of
Topamax twice a day by itself, but I felt too stupid. Then, we reduced my
dose and added the Zonagran and now I feel better. I took the Zonagran by
itself and I felt great, but I had a couple of seizures. When I was first
diagnosed in 1988, I took Depakote (Valproic Acid). I took it for many
years. I had occasional breakthrough seizures, almost always due to lack of
sleep and/or drinking (I was in college). I tried Lamictal, but was
allergic . The only other medication used for my type of epilepsy is called
Kepra, but it has been known to cause rages! Not interested in going there.
Thank you for your help!
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