Well not much has really happened this week Ivan has had another bad flare up but we have finally got it under control by increasing his cortisone and today the wet wraps only need to be done twice which is good.
On another note I don't know if I've mentioned it before but I'm getting married in march so this week I organized the girls dresses and decided on the colors of the boys ties as the kids are our bridal party. I also booked in the make up and hair person and the photographer which is exciting.
Thursday, 20 October 2011
Friday, 14 October 2011
sorry all it has been a rough couple of days and i needed time out from everything. Ivan saw his pead on Wednesday and although she is happy with his skin not because it is clear but more because there is no infection for once which is great for him i think this is the first time this year that he hasn't had one. she has also suggested after talking to njh that we start ivan on immunosupressant therapy to finally clear his skin up but i have read about this it is very scary with some scary side effect eg liver or kidney failure. we have a couple of months to make a descion but i just feel overwhelmed by it it's such a big discion. also hannah had her appt with her pead and after one lot of testing they are thinking she has high functioning autism which would explain alot about her behavior. i have also decided after talking to sam that i need to see my gp to get checked for depression as im isolating myself and am finding it hard to smile lately. one good thing i'm having me time tonight and going out for tea with the girls i can't remember the last time i did that. :)
Monday, 10 October 2011
:(
today im having a really down day. i feel like im drowning in life. ivan isn't sleeping again and he has had a bad flare up which now looks infected. im just so over it. again we went down the street and poor ivan had people staring at him because of the wet wraps all over his body i wish i could make it all go away for him. thankfully we have a pead appt tomorrow so hopefully we get some answers
Saturday, 8 October 2011
a little about the rest of the family
John: well my partners name is john and we have been together for 5yrs now. he is great we are getting married in march and i can't wait. John tries to help out with ivans medical needs but it is hard for him cause he works 6 days a week so i do most of it which i don't mind as he works hard. he is a wonderful father and partner and cares so much about everyone around him.
Jasmine 10yrs old: jasmine is the oldest of my step daughters she is a very loving and caring person she has excepted me into her life really well and after me and her dad being together for 2yrs she was telling all her friends i was her step mum. she is also very helpful with the care for ivan and can tell u every allergy ivan has which is great.
Hannah 8yrs old: hannah is a very complex child. we are trying to find answers for her behaviour as she lies continusly, and gernerally just does the oppisite to what she is supposed to do (there is more to it but it would take a whole different post to explain it) atm they think she may have a chemical imbalance in the brain so they are doing tests for it. otherwise hannah can be very caring and loving, she has taken the longest to except me as part of her family and even now will still tell me i'm not her family so i can't tell her off.
Connor 7yrs old: connor is a great kid we have really grown close cause when i was pregnant with ivan his mum worked fulltime so i would have him everyday so we developed a close relationship and i have also seen alot of his milestones over the years which was great. connor loves helping with ivans wet wraps and can now do a arm or leg by himself now which ivan loves him doing.
Sam (step kids mum): well what can i say sam and i are like sisters, she is my best friend and i am hers. it wasn't always like that but we figure we had all come from horrible broken families and decided we didn't want that for these kids, so at first it was that we were talking ok to each other and now we class ourselves family. she is helping me plan my wedding to her ex husband and if i need someone to talk to i go to her. she is also the only other person i will let care for ivan as i know she knows it all. and we all even have tea together once a week as an extra big family.
well there is a little insight into the rest of the family that i love to bits xx
Jasmine 10yrs old: jasmine is the oldest of my step daughters she is a very loving and caring person she has excepted me into her life really well and after me and her dad being together for 2yrs she was telling all her friends i was her step mum. she is also very helpful with the care for ivan and can tell u every allergy ivan has which is great.
Hannah 8yrs old: hannah is a very complex child. we are trying to find answers for her behaviour as she lies continusly, and gernerally just does the oppisite to what she is supposed to do (there is more to it but it would take a whole different post to explain it) atm they think she may have a chemical imbalance in the brain so they are doing tests for it. otherwise hannah can be very caring and loving, she has taken the longest to except me as part of her family and even now will still tell me i'm not her family so i can't tell her off.
Connor 7yrs old: connor is a great kid we have really grown close cause when i was pregnant with ivan his mum worked fulltime so i would have him everyday so we developed a close relationship and i have also seen alot of his milestones over the years which was great. connor loves helping with ivans wet wraps and can now do a arm or leg by himself now which ivan loves him doing.
Sam (step kids mum): well what can i say sam and i are like sisters, she is my best friend and i am hers. it wasn't always like that but we figure we had all come from horrible broken families and decided we didn't want that for these kids, so at first it was that we were talking ok to each other and now we class ourselves family. she is helping me plan my wedding to her ex husband and if i need someone to talk to i go to her. she is also the only other person i will let care for ivan as i know she knows it all. and we all even have tea together once a week as an extra big family.
well there is a little insight into the rest of the family that i love to bits xx
some of the things we have tried
well im sitting at home alone and all the kids are in bed my partner has gone fishing for the night so i thought i would write another post.
some of the things we have tired to help ivans skin which haven't worked for us but might for others: qv, dermaveen, dermezee, hopes exzema relief he had a reaction to all of these which would make his flare up worse. goats milk soap, oats in a stocking in the bath, olive oil applied to the skin 3 times a day, water filter on the taps, crocodile oil, nearly every sensitive moisturizer on the shelf, advantin, elidel, elecon (this one stills works every now and then) there are other cortisone creams we have tried but i can't remember the name of now, we have also tried numerous anti-histamines for eg phernegen and vallergan which he is allergic too, lorapead, Zyrtec, clarintine.
Because of ivans allergies mainly his extreme pollen allergy he is in wet wraps 3 times a day 7 days a week for 9mths a year and if the pollen count is higher than mild he has to stay indoors because he will flare up within 5 mins of being outside which really sucks sometimes when i want to go but can't.
some of the things we have tired to help ivans skin which haven't worked for us but might for others: qv, dermaveen, dermezee, hopes exzema relief he had a reaction to all of these which would make his flare up worse. goats milk soap, oats in a stocking in the bath, olive oil applied to the skin 3 times a day, water filter on the taps, crocodile oil, nearly every sensitive moisturizer on the shelf, advantin, elidel, elecon (this one stills works every now and then) there are other cortisone creams we have tried but i can't remember the name of now, we have also tried numerous anti-histamines for eg phernegen and vallergan which he is allergic too, lorapead, Zyrtec, clarintine.
Because of ivans allergies mainly his extreme pollen allergy he is in wet wraps 3 times a day 7 days a week for 9mths a year and if the pollen count is higher than mild he has to stay indoors because he will flare up within 5 mins of being outside which really sucks sometimes when i want to go but can't.
Friday, 7 October 2011
Sleep
The antihistimes aren't working anymore and we are back to only sleeping about 4hrs a night. You would think my body would be used to it by now and I suppose to a degree it is, but I feel like I haven't slept in 3yrs. Also what doesn't help is Ivan has allergies to all the antihistamines that have sedatives in them to help sleep. :(
Thursday, 6 October 2011
A quick update on ivans first 3 yrs
ivan was diagnosed with eczema at 3mths old i think he had it from birth but they just kept telling me it was dry skin and nothing to worry about. At first we were just seeing the gp but it was just getting worse so we were referred to a pead who did a allergy test and ivan was allergic to egg, wheat, dairy, soy, citrus dust mites and most household chemicals. This was tough at first as we had to change everything we did eg how we cooked how we cleaned etc.
we saw this doctor for about 1yr and ivans skin kept getting worse no matter what we tried and what strength cortisone we used and the doctor kept telling me that i was causing it to get worse and that it really wasn't as bad as i thought so i took him to emerg as i was really concerned about him and at 13mths old he had his first admission for a staph infection that the pead said wasn't that bad.
it was after this admission that i decided to take him to the children's hospital to get more specialized care. our first apportionment turned out to be an admission for 3 days and this has become routine over the years so now i actually dread going to follow up appts cause i hate seeing ivan in pain and admitted.
last year he had a allergy test redone and he had grown out of the dairy and soy allergies but his pollen allergies are now so bad he has to be in wet wraps for 9mths of the year and if the pollen count is over mild he is not allowed outside as he will flare up in 5mins so this has become very isolating for me as i can't always go out when i want to and the weather decides for me when we go out. the amount of infections ivan has had i have lost count of as it seems as soon as he comes off the antis he gets another one. i can tell u i'm truly over it. it feels like u are trying to fight something blind folded sometimes. i must say the doctors at the children's have been great though and even admitted when they didn't know what else to do for him so they contacted njh in America just to try and get some help and now they stay in regular contact with them. i think thats it just a quick update if i forgot something i'll add it later. or if u have any questions feel free to ask :)
we saw this doctor for about 1yr and ivans skin kept getting worse no matter what we tried and what strength cortisone we used and the doctor kept telling me that i was causing it to get worse and that it really wasn't as bad as i thought so i took him to emerg as i was really concerned about him and at 13mths old he had his first admission for a staph infection that the pead said wasn't that bad.
it was after this admission that i decided to take him to the children's hospital to get more specialized care. our first apportionment turned out to be an admission for 3 days and this has become routine over the years so now i actually dread going to follow up appts cause i hate seeing ivan in pain and admitted.
last year he had a allergy test redone and he had grown out of the dairy and soy allergies but his pollen allergies are now so bad he has to be in wet wraps for 9mths of the year and if the pollen count is over mild he is not allowed outside as he will flare up in 5mins so this has become very isolating for me as i can't always go out when i want to and the weather decides for me when we go out. the amount of infections ivan has had i have lost count of as it seems as soon as he comes off the antis he gets another one. i can tell u i'm truly over it. it feels like u are trying to fight something blind folded sometimes. i must say the doctors at the children's have been great though and even admitted when they didn't know what else to do for him so they contacted njh in America just to try and get some help and now they stay in regular contact with them. i think thats it just a quick update if i forgot something i'll add it later. or if u have any questions feel free to ask :)
Arghhhh
Just great got up this morning and was getting Ivan ready to put his wet wraps on and found he has ringworm so now I have to work out what is exzema and what is ringroom and hope that he doesn't get a major infection from it. I'm over infections they r my worst nightmare.
Wednesday, 5 October 2011
hi all i'm new to this and don't really know what im doing but im hoping to use this blog as a place to vent about some of the things that effect my everyday life with having a child with chronic exzema and also 3 step childern who i love dearly that we have 50/50 care of as they only live around the corner.
my best friend is my future husbands ex wife we weren't always close but over the years we have become best friends and all get along great which is good. i also work 1 day a week as i need to pay the medical bills somehow. sometimes life is challageing but i believe we are only given what we can handle. hope u enjoy this blog :)
my best friend is my future husbands ex wife we weren't always close but over the years we have become best friends and all get along great which is good. i also work 1 day a week as i need to pay the medical bills somehow. sometimes life is challageing but i believe we are only given what we can handle. hope u enjoy this blog :)
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