Thursday 13 March 2008

Worry 101 ...

OK....... let's talk about my baby the middle Brother - S ... aka Twin 1

I believe that Murphy's goal this week was to push me over the edge and turn my hair gray er ! with sickness and medical appointments.

It was a bad week . Looking back over the first twenty months I guess it really should not have been a surprise to me S has been so well - they both have (excepting for J's diagnosis of VUR urinary reflux). We have hardly needed to see the GP.

All this last week my little guy S has had temperatures up to 39 plus and it was over 40 degrees Tuesday night and 39.7 still last night at midnight.Today, he has finally had no fever after starting antibiotics...

We have been to GP three times and Accident & Emergency twice (though it was neither an accident or emergency). Yesterday, we asked to see a more experienced different GP and he thinks it is an ear infections (Otitis Media) - so he started 'Amoxil'.

It started last Thursday . I took him to GP Friday afternoon - it was a new Dr to the practice.He said it was most likely a virus. He had a slightly runny nose and mild cough.

Ok . S wasn't too sick but just 'needy' over weekend with a few temperatures up to 39. I took him back Monday afternoon to see a GP again - we saw same Dr.I wasn't happy with that visit .

That night I took him to casualty - I wanted to get a blood test as he seemed quite unwell by 8.30pm .I also wanted to get his urine checked. They were going to admit him but wouldn't do blood tests and I didn't want him in hospital for nothing. By the time we got seen S had picked up again and his temp was down.We left with urine & stool forms.

Tuesday, he was unwell and very whingey. We went back to hospital Tuesday night after we finally caught clean catch urine (only took 4 hrs nappy free) and stool (in the nappy thankfully).He wasn't eating much though still BF heaps (I was so glad of him BF still).

His temp was 40 this time - they did bloods but white cells were apparently in normal range Though his c-reactive protein (should be 0-5) was 26 .I Googled it and it means presence of infection or inflammation. Still we went home .They were happy for me to follow up with GP.

As I'd worked as a registered nurse in Children's ward for 12 yrs I knew what to do and besides we live 5 mins from the hospital if we needed to come back.

Wednesday, more high temps so went to see the senior GP who diagnosed 'Otitis media' both ears ??? who knows - but since he started the Amoxil the temps have finally come down.I have been so worried always thinking the worse. I felt at the end of my rope some days between him being sick and so clingy. Sleep has been little and disturbed too.

Monday, we also found out S needed glasses . The vision in his left eye is quite bad (from specialists perspective it would be very blurry - S can't tell them this though) .

It is related to myelin sheath around the optic nerve growing down obscuring/distorting the optic disc (remember the white eye reflection) .The other lens will have plain glass and we will need to patch it 2hrs a day (starting once he gets used to having glasses in 2 months time approx).He will need patching till 7-8 years old.

The Specialist said otherwise the brain will switch off and he will lose vision in the that eye - he might still not have much anyway but hopefully patching will make the eye focus and brain use the available vision. It is rare what he has.

Today we got his new glasses . We only had the choice of one style and purple or blue . So far, though he doesn't like them, he has kept them on. He is a little champ.

I still feel very sad ... it is my fault . He is still at risk of experiencing other problems -Optic Glioma in either eye - his right (good eye) or Left eye (hard to monitor this as well because they can't see the disc) .It is related to a genetic disease he has (and I have).My cousin (now 23 lost all the vision in one of her eye at age 2 from this). Worry 101.





Also, he is anaemic because he is the child who never ate baby food ...even rice cereal .Everything was refused and gagged on . He still pretty much eats NOTHING but rice, crackers sometimes custard, yoghurt and chocolate ! plus a few sour lollies.
(this is my mum feeding him at about 7 months- my hands are not that old LOL)
(It was puree pear)

Current foods he sometimes eats: the food mentioned above, cheerios, fries, chips/crisps, pretzels, some cookies , small amount of pasta with mince bolognaise sauce, alphagettio's and very recently small pieces of bacon, grapes and apple. Sometimes he will at a little bread.

Current foods rejected: meat, fish, chicken, vegetables, cheese, eggs ... Not one vegetable unless it is mixed in with bolognaise sauce and so fine he can't see it ...everything else healthy , do I really need to go on?

This week he ate barely nothing. I know he has lost weight. We started him on liquid iron to hopefully stimulate his appetite too. If I don't 'nurse' him during the day he still refuses to eat when well... he just grazes on what he wants .The rest he 'pegs' it across the table or onto the floor. New foods - well he just shakes his head and pushes it away too.

Any suggestions on how to get him to eat ?
J eats very well ... no worries on his appetite.

22 comments :

M the Mommy said...

Oh! I just wanted to offer my best wishes. How scary and difficult to be going through all these health issues. I will be thinking about you and sending you lots of healing energy. All the best - Meleah

Wendy said...

First off, I have to say that you can't blame yourself! I know, it's genetic from you, but that's NOT your fault, it happens. Please, don't go guilty about it, it's beyond your control and your a great mommy, so remember that.

I wish I could offer some advice on getting him to eat, but I'm in pretty much the same boat with my 9mo daughter. She threw up baby cereal when we tried it two months ago, and has hardly touched baby food since, though now she seems to want big people food (which is pretty difficult for someone with no teeth!) I'm seriously starting to consider getting a copy of "Deceptively Delicious". Have you heard of it? Maybe there's an idea or two in it for both of us.
Sorry you had such a bad experience with Dr NewGuy. Glad to hear someone finally caught on and got him on the antibiotics he needs.

Anonymous said...

I was wondering if you were going to come clean to the universe. Too hard, taking all this on by yourself.
Hugs. You know what I think.

Not your fault - how could it be? You did not purposely give this to S and it is genetic, so someone gave it to you and someone gave it to her. There was nothing you could do to stop it, statistically.

S looks adorable in the glasses. A real cutie. He will cope but will you? Am so worried about you.

Food... You know, I have BTDT... my only solution is prednisone the wonder drug but not really an option for little S :) How about going back to basic baby food and starting again. This worked with Noah. I bought a whole lot of the Organic Bubs food and mixed it in with other stuff and it worked...until he grew a mind of his own and will not let me spoon feed him any more.
Other than that, Trish, you are doing a fantastic job. The boys are both beautiful. Toddlers won't let them selves starve. Just keep pumping in the iron. Our paed suggested zinc too, which will help to boost appetite (and give a higher chance of a woman having a multiple birth - just thought I'd throw that in there).

Hugs. Am thinking of you.

Marita said...

Don't go blaming yourself.

The glasses are too cute.

I found using a saline nose spray helped relieve ear infections, in combination with antibiotics.

As to the food I notice the list of things your little man will eat is mostly crunchy foods. Could it be a sensory processing issue?

Unknown said...

Sounds like you're having a really rough time at the moment. Those glasses are very cute, hope he keeps them on.

As for eating, I had a similar problem with my eldest son when he has his many ear infections. eventually I'd just feed him joghurt and flings (which are corn crisps). I know, there is no nutrition in them at all, but it was the only thing he'd keep down... so I was happy he was eating at least something.

just jamie said...

Okay why are you taking the blame for this one? No Mama guilt.

My little guy wears glasses, too. He (yours) looks precious.

Good luck on the eating. When you get it figured out, fill me in please. :)

Anonymous said...

awwww

He looks gorgeous in his glasses! Good that he's leaving them on.

How can you blame yourself? Could you have controlled your genes? This is not something that was in your control, there is no fault, you let go of that guilt.

As for the food, just keep trying. Don't worry about trying to make him "sit down and eat". It he is a grazer then constantly have grazing stuff available (preferably what little good stuff he'll eat). Sure, make him sit down at the table with the rest of you to eat and offer him something so he knows the routine, but if he's a grazer, let him graze. Pick your battles, the one between grazing or eating 3 squares a day isn't that big a deal.

One suggestion on the food though, if he will eat mince with grated vege and pasta then make up heap of small containers of it to freeze so it is always on hand and feed him that for every meal.

If you use lean good quality mince then he is getting iron & protein from the mince & You can vary the vege's you grate up to put in it.

I know it sounds boring or strange to us as adults, but if you have just one thing that he will eat then use it. You can work on expanding the variety of foods he eats later after you get him eating larger quantities more regularly.

hugs

Miscellaneous-Mum said...

Oh I'm sorry to read this. DO NOT guilt trip yourself.

As for the food, my boy is about as fussy. I'm just rolling with it as best as I can. I could get all frazzled, but it's not worth it.

You've still got the boob factor in play, and trust me, that's awesome

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(sorry about the tremendous amount of deleted comments. My computer went nuts! and did multiples)

Jenn said...

Your situation with the eating sounds just like mine with my 24 month old. If it weren't for the nursing I think I would go crazy worrying about him getting any nutrients. The list of likes is very much like my son's. I'm sorry I don't have any helpful suggestions, hopefully just knowing you're not the only one going through it will help some. I know it helps me. If I recall correctly your sons are 20 months? I have found a lot of progress can be made in just a few short months. Keep on doing what you're doing.

Anonymous said...

Trish, I'm so sorry to hear about your woes - it's awful when they're sick and something long-term like this seems to be forever. One day at a time!

I can't help with the eating - my boys eat themselves silly and I know it's nothing to do with my mothering skills, I just got so lucky with them. I find that they'll eat most things if I melt cheese with them in wrap bread (I use Mountain Bread) - and then cut it up in little sandwiches - you could start just with the cheese sandwiches and go from there! Who doesn't like toasted cheese sandwiches, I ask?

Cathy said...

boy oh boy! hope verything is okay soon!

as for the glasses, they are gorgeous...and as others have mentioned, it's not something that you could control so do not blame yourself!

food issues...no idea... but i think that children will just eat when they are hungry! so try starvation and then an offering of his least favourite food (joking about the starvation). i'm guessing most kids groiw out of this fussy stage (i hope so anyway)!

Momisodes said...

Oh sweetie, please don't beat yourself up. I think as moms we really carry a world of guilt on our shoulders. The glasses look adorable :) As for food, any chance for veggie chips or veggie pasta? Sounds like some of the foods he likes are harder and crunchy. Could he also be teething? My daughter's appetite would wane right around the time a tooth was coming. Big *hugs* to you and hoping things start to look up.

jeanie said...

Everyone is right - how cute is he in his glasses. And unless you sat down and evilly hatched a plan to give your child a genetic problem (and therefore you have to accuse your own parents of such deviousness) you cannot own it as "your fault" - it is the fault of nature, really, and thanks to science we can at least make it as minimal as possible.

As to the eating, my sister still has a girl who eats 3 things only - honey sandwiches, weet-bix and spaghetti bolognaise. She is now 3.

Cathy said...

oh, by the way, after months of stalking - i have FINALLY subscribed to your blog!! and i have also taken the plunge and added a subscriber feed thingy to my own...currently with 0 readers! lol

Anonymous said...

As others have said - you can't blame yourself! Easier said than done, I know. That Mother guilt is a powerful thing. He does look gorgeous in his glasses too.
I had similar issues with Chiq this week including a visit to A&E on Sat night - she had Otitis as well, plus tonsilitis. Then 2 days after the antibiotics started and the fever had gone down, she came out in a rash so we were back at the drs. I was even thinking of a post about how worrying it is being a Mum. I know just what you're going through.
As for food - I agree with what others have said - give him the things he will eat and if that's mince you can hide different vegies in it to vary the nutrients he's getting. Maybe just take it slowly and try to offer a few new things each week along with the things he will eat. It will get better over time, but in the meantime, don't beat yourself up about it - you are doing a fantastic job!

Anonymous said...

Hey, I didn't think it was possible for him to get any cuter, but he's gone and done it!

You're a great mum who would do anything for her kids. Please don't be so hard on yourself. Thank goodness for breastfeeding, eh? :)

BB said...

Hey there Trish... a couple of things. As you know, I had one who refused point blank to eat at all until he was 11 months old. And my second is possibly the world's least adventurous eater - menu consists of spaghetti (same as you) Weetbix, honey sandwiches and ice-cream. Not great nutritionally. She even 'drafts' out the slivers of carrot and zucchini I hide in the bolognaise sauce! So I believe I know where you are coming from!!!

As others have said, DO NOT TAKE IT PERSONALLY... each kid is different (even if they are twins) and has their own reasons for their behaviour. I have NO IDEA why my TWL refuses to even TRY anything new. But I do know that I can sneak in some nutrition in other ways. I use Pentavite drops to make up whatever we have failed to inbibe the normal way. And I have a great sausage roll recipe that I shall soon post to trick them into eating some veges.

Thanks also for visiting my humble little blog and sweet comments.

Keep you chin up and enjoy your food in front of him!

BB

♥.Trish.♥ Drumboys said...

Thank for all the kind comments and advice.

I appreciate it from the bottom of my heart &hearts.

I am not going to battle with him over food anymore but keep sneaking as much as I can in or give him the same foods over and over - as I have been doing a bit of anyway.

I don't feel as bad or alone now.I read on another blog and from my own experience -I hope when he is 14 yrs old I will have to lock the food away from him.

For some reason I am also not getting email notifications of comments - b*gger if I know if it's blogger or hotmail.GGRrr !

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