How many kids do you have with EHK?

Posted by: Cindie

How many kids do you have with EHK? - 02/16/09 10:26 PM

Hey all, I'm just curious to see how many kids all of you have that were born with EHK.

carlos and I are trying for number two. Yea some of you may not agree but it's my and carlos's choice lol. We thought it thru and talked about it at length.

personally.... I believe I"ll have 2 out of the 3 kids total I want that will have EHK. We're fine with it....

I know some of you don't want to have a baby because of the risk of EHK. thats never been an issue for me. smile

So .... HOW MANY KIDS IN YOUR FAMILY DO YOU HAVE WITH EHK? (or if YOU have siblings with it... how many?)
Posted by: Hearsay

Re: How many kids do you have with EHK? - 04/28/09 10:36 AM

I have 3 affected, one not. It is HAAAARD. Not so bad with them spaced out to 3 years, but still a lot of work. I love them to death, but I'd go completely bonkers if I had them closer than 3 years apart.

My 6yo is in K. He gets up at 5:45am to get his bath routine done in time for school starting at 8. We barely make it out the door, and that's with me making his breakfast and lunch and doing his creams and clothes while my husband takes care of the shower.

My 3yo is going through the stage where he fights most of his personal care. My older one did this, too. Showering is an emotionally draining experience when you have an hour of your child screaming "I DON'T WANT YOU!!" when you try to rub the skin off or file or get the scale out of his hair or cut his nails or anything. Then once out, he doesn't want cream because his skin feels good and you can't explain to him that it will dry out in an hour because he has no sense of time. Plus he's still a little clumsy when walking, so we have frequent bang-up injuries from falls.

Then there's the baby. He's 7mo. He's a lot of fun, but still needs a lot of attention, as all babies do. Some days it is challenging to find time to bathe him without the other 3 getting into a fight or making a mess. I usually pull them all into the shower with me so I can babysit, but then when we get out, I have to get 3 of them creamed before they dry out. now that it is summer, I am often feeding or changing the baby and the older ones are demanding a drink and someone always ends up waiting.

In the middle of that is my girl. She's not affected, but needs a lot of attention. I think she frequently feels left out of the bath routine. I can get her shower done in 5 minutes. She doesn't need cream. She always wants a drink when I'm providing for the boys. Next year she'll be in K at the same school as my oldest. Her ability to get to school on time will be dictated by my son's schedule. Yesterday, she missed out on a petting zoo field trip because it was too hot for her brothers to attend.

So, frankly, I think you'd be an idiot to try for a baby without waiting a couple years in between, seeing how you have even more issues with your firstborn than I do.
Posted by: Cindie

Re: How many kids do you have with EHK? - 04/28/09 06:49 PM

hehe..... Thanks so much for sharing. I totally remember being like that as a kid!! TJ HATES baths. In order to keep him from screaming I take him into the shower with me. We're having #2 around Dec. 25th and we're happy. They will be 16-17mo apart. I'm hoping the baby doesn't have EHK,,, but you never know!
Posted by: BritMum

Re: How many kids do you have with EHK? - 04/28/09 07:25 PM

We decided to go for baby #2 pretty close to our daughter (she's now 2 and has probable CIE). At the time I accepted our 1:4 chance of having another child with Ich and had the mentality of what will be, will be. And in some ways I was `hopeful' (that's the wrong word but I can't explain it any other way) that baby #2 also had Ich for our daughter's sake - she could share the trials and tribulations and have someone who actually understood what it is like for her. Anyhow, baby #2 arrived in September and there's a 19 month age gap and she's unaffected! I have to say that I have no idea how I would've coped with 2 affected children so close in age and this early age!! We'd never get out of the house!!
Posted by: Cindie

Re: How many kids do you have with EHK? - 04/29/09 12:50 AM

britmum~ I totally understand your use of "hopeful". We are FINE if baby #2 has EHK... we kind of hope he/she (Hopefully SHE) doesn't.... Luckily.. We have TONS of experience in my family 4 GENERATIONS of it.

One of the best dr's in California, Dr. Linda Golkar in Loma linda has never had 4 generations of EHK in her practice, much less 3.... She's requested to see me, my mother, and my son. smile And her students took pics of me and TJ and wrote us up in a paper. I'm hoping to get a copy when it's published. I think that if I have more kids with EHK that we'll be fine.... except we'll go thru TONS of vaseline (we don't use aquaphor.. too expensive and it doesn't spread well.. the $$store stuff works fine for us)

Posted by: Hearsay

Re: How many kids do you have with EHK? - 04/29/09 09:39 PM

Well, best of luck to you. Everyone I have ever talked to about having kids under 20mo apart have a very stressful few years, although I hear it is better when they are older. Someday. smile If we don't kill them first. smile
Posted by: Cindie

Re: How many kids do you have with EHK? - 04/30/09 09:56 PM

lol, I'm sure it'll be very stressful. smile but after this one, we're waiting around 4 or 5 yrs til the last one. part of it has to do with us wanting TJ to have a sibling close in age so they can grow up together and have someone to play with... also, I think that a sibling will challenge TJ to learn more and vice versa.