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#10676 - 12/18/05 09:43 AM Fussy baby?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I'm not sure if her fussiness is ichthyosis-related (pretty sure she has Netherton's syndrome), or if it's just her personality.

Generally she's a good baby, but anytime you move her (i.e., pass her to one person to another, move her from one arm to another, pick her up out of her crib, or put her down), she cries. Not hysterical crying or anything.

Just wondering if anyone else has experience with this!
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Courtney
Mom to Julia

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#10677 - 12/18/05 02:20 PM Re: Fussy baby?
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
When my 13 year old son Evan with EHK was a baby, I was pretty much the only one who could hold him. He would cry with anyone else and still would cry with me. I always felt it was ichthysosis related. They sent him home from the hosptal with morphine. There were times I would just put him in his bed, close his door and let him cry. I just couldn't do anything else for him. For what it's worth, it did get better. In fact, now I don't know how he goes through some of the scrapes he gets without saying it hurts. By the time we were into the second year, he cried much less.
Deidra
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Dee

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#10678 - 12/18/05 05:07 PM Re: Fussy baby?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Maybe it is ichthyosis-related then. Hm. I give her Tylenol on occasion when her skin seems really bad, but otherwise I don't think we have much options for her (she's 2 months old, and underweight b/c of FTT - barely 7lbs). She's OK once you're holding her, stops crying within a minute or so, just doesn't like being moved. But sometimes she's OK. It's really confusing! lol

Thanks for the fast reply!!
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Courtney
Mom to Julia

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#10679 - 12/26/05 05:42 PM Re: Fussy baby?
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Hi..

Our babe is a 6 month old with EHK. He cries alot when he is uncomfortable. He cries a ton more than our first two and I do not think it is temperament - I think it is pain. Generally, Evan does not like being moved too much and sometimes he cries when being held only to stop when he is placed in his bouncy seat. We manage Evan's pain with morphine, infant tylenol and homepathic teething tablets. Skin aside, at six months he is doing well. There are some concerns about fine & gross motor skills. He weighs a little over 13 pounds. A palliative care specialist came to our home and evaluated Evan. He thinks our pain management is on target and if anything we could be more liberal with it. The palliative care doctor was referred by out pediatrician. I am unfamiliar with Netherton's syndrome, but when Evan was a newborn - he looked like a burn victim minus the char and our sage pediatrician is very compassionate about Evan.

Best wishes to you and your daughter. Feel free to e-mail me kimmayone@juno.com

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#10680 - 12/27/05 02:46 AM Re: Fussy baby?
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
After I typed the reply I went back to our log books. Evan was only 9 pounds at 2 months. We were basically in the hopsital for the first two months of his life - a few other thoughts:

We give Evan 1 1/4 strength formula. In other words for 16 oz of water, we use 10 scoops of formula. This was also our pediatrician's idea.

Also, Evan takes an iron supplement. When we left the hospital, Evan was highly anemic to the point of needing a big transfusion. The iron supplement has prevented any new anemia.

Icthyosis eats up a lot of calories, thus the extra formula powder and skin uses up a lot of iron to grow, thus the iron supplement. Your precious babe is not failing to thrive - her skin is the cause!

I hope this is helpful.
Best wishes and kind thoughts.
Kim

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#10681 - 12/27/05 07:07 AM Re: Fussy baby?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Thanks for the replies!

Well, we know that the reason she's FTT is b/c of her skin lol We've just not figured out a way to make her gain more weight. Sometimes she does great, gained a pound in a week once, but then she'll lose quite a few ounces the next week. We're breastfeeding, and I'm reluctant to switch to formula for a whole lot of reasons. One of them being we've tried everything on the planet to get her to gain weight (exlusively breastfeeding, breastfeeding and supplimenting w/formula, exclusively formula feeding, BFing and supplimenting with extra hindmilk), and nothing's really made a huge difference. So now we're exclusively BFing. A nutitionist I saw mentioned some sort of oil to add to cereal, that's just pure calories, but she's too young for that right now.

Maybe I'll make another post about this, I'm going O/T on my own post lol
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Courtney
Mom to Julia

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#10682 - 12/29/05 12:32 AM Re: Fussy baby?
Lisa for Jake Offline
Member

Registered: 04/26/01
Posts: 103
Loc: Manchester, England
Hi
I so dont want to put a downer on things, but there is light at the end ! i tried to breast feed my son jake (he is now aged 9 with nethertons) It was such a joy to do with alex,,my other son ( without ich) i just felt it would be right to do with jake,,,,,,,but would he suckle,,,no,,,,,,i tried to give him my milk out of a bottle to no avail,,,, we tried all kinds of bottle teats he would not suck em,,,,,in the end he had to have a tube put up his nose that went into his stomach,we had to learn how to do it too,,,,,,,it knocked me sick i can tell you......the doctors wanted to put a tube into his tummy but decided against it due to him getting infections all the time
he failed to thrive for months,,,,, he was admitted to hospital at 6 weeks old, and came home when he was 10months old. Maybe your daughter is hungry, or maybe her skin hurts,,,,,,,,,but on the bright side,,,i did say there would be a light!!! jake is now 9 and eats like a pig (not good for the food bills,,,,,,but worth it really as i didnt ever think i would see him eat) and his skin has got so much better over the years. I hope this doesnt dishearten you. please email me if you wish. all the best for the new year xxxx

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