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recap…

Posted on: May 3, 2008

Since things have calmed down a bit I figured I’d take the opportunity to tell you what exactly happened right after the birth of our daughter 2 weeks ago. Some of you have emailed me and expressed worries as the why we got so quite, I appreciate your kind words. Also, I figured I’d share this experience with you (and whomever it may concern) as it might prove valuable to others as well.

Before you read any further, let me just point out that S is now, given the state of things, doing well and the baby is also fine. :) Also, the photos below are taken from various resources online, they ARE NOT S.

About 4 days before the delivery S started getting an itchy rash on her belly, it looked like little red bumps that appeared first along her stretch-marks and then rapidly spread across her entire stomach. She had some stretch-marks due to the straining of her skin, so at first we figured it was something that had to do with general fatigue of the skin, but as the itchiness grew stronger and stronger it became almost unbearable to her and she couldn’t sleep at night. In the end she could think of nothing to do but to cool her belly with ice pads. Normally you’re not supposed to let your belly grow cold during pregnancy, but since the itching was become nothing short of pure torture there was nothing else to do.

Getting rashes and itchiness during pregnancy is not that uncommon, so we we’re planning on consulting with the doctors on our next check up to the hospital but at first we wanted to do some research on our own. S found a webpage that talked about a rare skin disorder (1/100) called PUPPP (there is a lot of dedicated information on the web, just google for it) that looks something along the lines of the photo below.

PUPP

S’s symptoms seemed to fit perfectly, and since this disorder has no negative impact on the child (though it gives the mother pure hell) she figured she’d be able to stand it until the next checkup 1 day later. Also, this rash goes away almost immediately after birth, so worst case scenario she’d had to stand it for another week.

No need to however, the very same day that she found the page, her water broke.

It was just after midnight, the morning of April 18 that the water broke. We rushed to the hospital and about 8 hours later our daughter was born.

During the first 24 hours after delivery the rash on her belly almost went away and so we rejoiced and figured we were safe. However, as we would later learn, this was a false illusion probably induced by S being entirely washed out after the delivery (no pain relief what so ever during the birth…)

On the second day after the delivery the rash on her belly came back, grew even stronger and rapidly started spreading over her legs and thighs. The rash itself also changed character slightly and turned into red, bumpy plateaus of blisters and spots. This got us worried of course, and we started suspecting that it was not PUPPP after all. We alerted the doctors, but they seemed mostly clueless, and since it she was still able to endure the recommended we wait and see for a few days.

PG

On the third day after delivery, the rash and itchiness had grown so strong that S could no longer stand up or sit up straight, thus she could no longer breast feed and for the next few days she was not even able to visit the child. Also, due to the rash she could not sleep and was rapidly losing body strength. (Not to mention the mental strain)

I wish for no pregnant woman to have to go through this, but S is a fighter beyond any superlatives and I cannot express in words how strong she has been throughout this whole experience…

Again we appealed to the doctors to let her see a dermatologist, and as they were finally beginning to see the seriousness of the situation they set her up for a consultation. In the meantime I was doing some research on my own and had narrowed her possibilities down to either a very rare form of PUPPP or an even more uncommon disorder called Pemphigoid gestationis.

Pemphigoid gestationis is the result of hormone changes that occur during pregnancy and since the body’s hormone balance changes extremely rapidly right after giving birth, it usually comes into full bloom immediately after delivery. In some cases it leads to pre-term delivery and/or fetal death. Luckily, Linn had already been born and had not been affected at all, so at least we could relax on that matter. Usually this disorder comes back with subsequent pregnancies, in which case the symptoms usually grow even stronger.

The dermatologist confirmed our suspicions as possible causes and scheduled a skin sampling, thus S was kept in the hospital for an extra 2 days. The results of the test will be delivered next week.

At first, to coup with the itching and to prevent further spreading (by this time the rash covered most of her lower body, arms and belly) S was given a steroid cream to be applied directly to the rash itself, in effect this meant we had cover almost her entire body in the stuff. However, this cream seemed to have little or no effect and since it required such a large dose, after a couple of days she was given an oral medicine instead. This seemed to relax the itching slightly, and on Friday the 25th she and Linn could finally leave the hospital.

At the time of writing S’s condition has improved a lot and she is now able to move around more or less as usual, when her body temperature rises however, the red rashes come back to some extent, and so the doctors have recommended that she relax and take it as easy as possible. The itchiness has not gone away yet, but at least it seems manageable now.

According to online sources this condition usually goes away within 3-4 weeks, though in some rare cases it can go on for up to a year. Given S’s progress though I think she will be free of this torture within a week or two.

S, I really wish I could have done more for you during this time, saying that I love and respect you even more after seeing you go through this hell without losing spirit wont relieve the pain or the fatigue, but I do believe the worst is over and given just a little bit more time I’m sure this torture will go away.

Further reading on PUPP:

Further reading on Pemphigoid gestationis

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9 Responses to "recap…"

Oh my god! I had no idea this was going on. We just wanted to give you som space before pestering you with more questions! Poor Sachi!

Tell her that we think about you all allot and that we want Sachi to get well soon!

Aj aj aj aj aj aj! Shit asså! That sounds really exhausting and very unpleasant!!!! I really hope Sachi gets better, please share with her that the three of you are in our daily thoughts!

Lots of love and anti-rash mind-bending-beams!!!!

omg, I’m shocked! Heard of stressful deliveries, but nothing like this. Poor Sa-chan…

Linn must be really proud of having such brave and courageous parents.

Hope she’s allright and happy, and that Sachi is getting better everyday.
Let us know how you’re all doing.

Big get-well hugs from DK!

Thank you all very much! Things have improved a lot now and the worst is over. Your words mean a lot to both of us!

I have had Pupps since August & it got worse after baby delivered in October. I still have it. How long did S’s last? I’ve been on Prednizone since October & started clobex lotion but does nothing to help with the itching. I go in next week to get it biopsied b/c it keeps coming back and spreading. Please tell me there is hope!

C

Hi Cheryl! That’s terrible! I really feel your pain! S’s lasted for about a month after the delivery. It was really bad until she got a good medicine (that I’m now trying to find the name of) that really helped. After we started treatment with that medicine it got better in a few weeks.

I will write back here when I get the name of the medicine. Hopefully it can help you too! Hang in there!

Thanks, that would be lovely.

Hi there reading this article brought back so many memories for me! I sympathise so much as i too believe i had PUPPP! Doctors and hospitals ignored my frequent trips said they didnt really know what it was. I too felt like the last two weeks of my pregnancy was pure hell, unbearable and did feel like torture! This pic was the same as mine.. It started in my stretchmarks and then just spread all over arms, legs etc. it was absolute hell and i wouldnt wish it on anyone. Just hope i dont get it with my next pregnancy! I literially wanted to rip my skin off :) 2 weeks that nearly drove me mad :0) really feel for any woman that gets this! luckily the itching stopped a week before delivery but i was left with lingering rash for awhile. Im sure my post pregnancy stretchmarks are so scarred because of the PUPPP. this condition needs to be made more aware. Not nice. I have a beautiful girl though so worth it.

Hi Kelly, thanks for sharing. This is truly a horrible experience for any women I think (I’m speaking on behalf of my wife here though). I really hope they find a ‘cure’ for this soon so that others who find themselves in the same situation can get help fast…

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