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#10535 - 07/11/05 02:32 AM fed up :(
victoria Offline

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
Hi Guys
Sorry havent posted much or been online a lot at all lately, Dont know if many of you remember me but my nine month old son has ichthyosis and ive posted a couple of times before about him....Well to be honest I just havent been able to face being online or talking to others I am feeling so down with coping with it all...Has anyone experienced feeding problems with ichthyosis children ? I have had non stop problems the minute a solid food hits one end its coming out the other end (lovely NOT i assure lol) The problem being is he hasnt had a solid stool since he was born and now at nine months its creating all sorts of problems and ruining his clothes and bedding more then the lotions for his condition are. I just know this is part of the ichthyosis how i dont know and why i dont know i just do...
We were supposed to have been going to see his skin specialist on september 15th and i was all okay with it and all hopeful that we could at last find out his skin type and possibly get to the bottom of this problem but i have had a letter through telling me they've had to cancel his appointment and another has been made for October 21st - annoyed no end as i have now had to cope with this issue for months on end with no help or knowledge from the specialists , weve seen them once and that was when i was told he had ichthyosis.
he isnt crawling, the poor little mite cant even sit himself up and its so frustrating to see him trying because he wants to so badly - then you got the other mums whos babies are the same age bragging , and i know all mums do and its cute but its so frustrating because you just wanna scream well my son cant yet and its not his fault.
I feel so stupid typing all this but if theres any people i can turn to i hope it can be you guys - i am so frustrated and so down and feel like some how i am letting him down some days we dont do solid food because his little bum gets red raw and i hate to see him like it and then i feel guilty because he cant keep going on just milk bottles so i feel in a no win situation.
sorry i ranted on enough and rambled enough havent i [img][/img] i love him to bits though dont get me wrong - just finding things tough at the moment.

#10536 - 07/11/05 11:08 AM Re: fed up :(
Deidra Offline

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
I can remeber my son's first year. I was so up and down (mainly down) emotionally. It was awful. I hurt so much for him and then I also hurt for me. I felt so guilty and depressed. There were times when he would cry and nobody else could console him but me and then I wasn't able to do such a good job. I would take him into his room and practically throw him into his crib, walk out, slam his bedroom door, walk into my bedroom, slam my bedroom door and lay on the bed and cry. I will tell you it got better. It seems like it was just before or just after his first birthday. I can't remember exactly when, we hit our rhythm. I had a huge birthday blowout for him on his first birthday because there were times I wasn't sure he and I would make it through that first year. Eventually things will get better. Hang on to that.

In regards to the feeding problems, has anyone considered allergies? I don't know about all forms of ichthyosis, but Evan who has EHK never even had diaper rash. Especially since you can't get into the dermotologist, I would be asking about things that may or may not be related to the ichthyois. Since you are having difficulties, could your baby's Dr. help you get into the dermotologist a little more quickly?

Keep postive thoughts as much as you can, make sure and take some time for yourself and remember that it will get better.


#10537 - 07/14/05 02:12 PM Re: fed up :(
toyahmiss Offline

Registered: 05/02/03
Posts: 27
Loc: Etobicoke, ON, Canada
Hi Victoria
When my daughter was a baby, it seemed she had to be changed every half hour, and what with trying to stop her from scratching herself til she bled, peeling off her skin, vaselining her, coping with boiling vats of water for her bath, wondering if she'd get rid of the build-up od scale etc etc, it was very traumatic. Not to mention, having to deal with your own grief and loss at losing out on the " baby dream" - no-one ever cooed at her and said how adorable she was, and even now i have 2 non-ichthyosis children I remember this very poignantly. Jovun has had feeding issues since she was 4months but she was projectile vomiting and losing weight so that at 1 year she was just 8lbs. I would recommend that you push and push for whatever you can get for your child, don't be put off by medical staff, as often they are not able to provide the advice you need - this bulletin board is probably one of the best sources of information.

By the way, I was born and brought up in Berkshire (Maidenhead)- my parents still live there!

The last thing I wanted to say was that it does get better.


#10538 - 07/14/05 08:21 PM Re: fed up :(
Laurensmom Offline

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Hi Victoria,

Your posting brought up so many familiar feelings. Our daughter Lauren is 14 months and has struggled with dietary/feeding and growing issues since she was born. We have a very different problem from the one you described in that Lauren presents more often than not as constipated with stooling extremely effortful. She has also not warmed up to the idea of solid food and continues to eat baby food. I have not been told by her doctors that her symptoms are related solely to her ichthyosis but instead to gastroesophogeal reflux for which she is on medication. We have found that our belly doctor (Gastrointerologist) is one of the most valuable members of Lauren's medical team and that the dermotologist can at times be the least helpful (nice guy but...).
While I still have those days when I feel that Lauren was born to the wrong mommy and I can not possibly meet all of her needs, more often I know that we belong together and that her little spirit and fight will take her and I to places most only dream of. Stay stong.

#10539 - 07/15/05 12:39 AM Re: fed up :(
immystique Offline

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Just to let you know, I'm 26 & I was born a colloidian baby & have lamellar. I was a mutation-no one else in either side of my family had it & no one heard of it. I am the oldest child in my family (I have a younger sis & a younger bro). It definitely gets better!

I just wanted to remind you that your babies are people, too, and there's nothing wrong with their minds. As they become aware of themselves, obviously they'll know they're different from everyone. My mother, while knowing absolutely nothing about ich & not having an awesome site like this (heck, not even having internet) to help her, wondered how I'd turn out & what my life would be like. The thing is, she never let me know that she worried, wondered, and had many, many bouts of guilt & crying about me. I found out about that from my grampa (mom's mom). My mom never said I had a "problem" or a "condition", she just said I had "special skin" and really that's all it is, even now.

I guess it never dawned on me that she felt worried and scared for me, as well as guilty for things she may have or have not done during pregnancy--thinking she may have caused my "special skin", but I guess I would, too if my normal pregnancy ended with a "abnormal" baby-especially a first baby! My poor parents didnt even get to hold me or even see me right away since the small-town podunk hospital I was born at had to put me in an incubator and whisk me away to the NICU until they figured out exactly what was "wrong" with me. As a mother myself with a 2 year old son & one due any week now, that would have to have been a very scary experience!

But anyway, my ramblings are just to say that no matter how difficult things are ( I had many crying, depressed nights with my "normal" son when he was a baby), things do get better & just try to treat your baby as normal as possible. It makes it easier for those of us "afflicted" to deal with the cruelties of childhood!
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

#10540 - 07/15/05 10:07 PM Re: fed up :(
gail Offline

Registered: 02/12/05
Posts: 18
Loc: england
Hi Victoria.
my eldest son can not have milk, and had loose stools from birth and now's on soya milk and he's fine now and he has XLI.
it dose get better, good luck.


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