Support Chat Thread

[BlueHadeda]

Gosh, I'm shocked at the private costs!!! It works very much different in our country. You can go through the state, but that also has long queues, etc. Most people in my community, either have private insurance (very expensive monthly contributions) for medical costs at private institutions, or they pay out of their pocket. To get an assesment, would be about $200-$250 (american dollar) and a session per week is anything between $20 - $80, with most of it around $30-$40. Still horribly expensive if paying out of pocket, but at least possible in severe cases to get a diagnosis and do 1 or 2 sessions just to get an idea of what excersizes to do at home with the child.

It shouldn't be so hard to get help for your child.

 

[CoffeePuffin]

Can I join in? My girl has a cleft palate, it's obviously not anything major but she is classed as special needs and she'll need an operation in March to repair it.

I'm getting annoyed at how people look at me in public and the comments I get because I feed her with a bottle that I have to squeeze, they think I'm force feeding her when I am most definitely not. She has to have special bottles to feed. They also tell me I'm holding her wrong because I hold her upright to feed as stuff comes out of her nose because of her cleft and she can choke.

 

[Peanut78]

Can I join in? My girl has a cleft palate, it's obviously not anything major but she is classed as special needs and she'll need an operation in March to repair it.

I'm getting annoyed at how people look at me in public and the comments I get because I feed her with a bottle that I have to squeeze, they think I'm force feeding her when I am most definitely not. She has to have special bottles to feed. They also tell me I'm holding her wrong because I hold her upright to feed as stuff comes out of her nose because of her cleft and she can choke.

Of course you can join! I know what you mean about people looking at you funny for things you have to do to enable your child I found my mum trying to feed my son differently (i.e. more solid food when his ability to chew was not yet there), he was still quite young because she felt that was "age appropriate" despite what I had told her about his feeding issues at the time Somebody at a birthday party once said to me "does he always eat like THAT"... It's not helpful, and quite surprising I must say - I would never say something like that to anyone (even before having my experience with my son)...

Hang in there hun, I totally get the annoyance

 

[BlueHadeda]

Welcome Coffee!

I can only imagine how difficult it must be for you and your daughter, especially at feeding times. She's such a cutie pie, how awful that she has to go through an operation at such a young age. Your nerves must be shot!! Will it be a long operation?

I've tried (invain) to ignore people's comments and looks. I'm sad and embarressed to say that it (still) bothers me. I try to let it slide off, but sometimes it hurts. And sometimes I resent people their normal/typical children. Even though I have 2 "normal" children myself.

 

[Tiff]

Welcome Coffee! Of course you can join in.

I can't even imagine what it'd be like to have to deal with that. I too try to shrug off people's really awful comments or looks but its super hard!!!!

 

[CoffeePuffin]

Welcome Coffee!

I can only imagine how difficult it must be for you and your daughter, especially at feeding times. She's such a cutie pie, how awful that she has to go through an operation at such a young age. Your nerves must be shot!! Will it be a long operation?

I've tried (invain) to ignore people's comments and looks. I'm sad and embarressed to say that it (still) bothers me. I try to let it slide off, but sometimes it hurts. And sometimes I resent people their normal/typical children. Even though I have 2 "normal" children myself.

I'm absolutely dreading it, I'll be a nervous wreck. Not sure how long the op will be but we're meeting her surgeon on friday along with a speech therapist, orthodontist and other people who will be involved in her care. Even though she's having her repair at 6 months, she will be under the cleft team until she is 18! Which makes me really nervous about what difficulties may lie ahead..

Thank you everyone else for your replies too.

 

[sun]

Just popping in to wish everyone a lovely holiday season! xxx

 

[Tiff]

Ditto!

Its been a challenging couple of weeks with Claire, she's not adjusted to having to leave at a moment's notice with showings etc (trying to sell our house). Fun times! We also got denied for PC Charity funding so back to the drawing board I suppose.

Happy 2013 to everyone!

 

[BlueHadeda]

Awww Tiff...

Same here - happy new year everyone! Let's hope and believe 2013 will be a good year for us all, but especially for our beautiful, special LO's!

 

[Phantom]

I'm not sure where I belong yet but I thought I would say hello because i browse here frequently. My 16 month old son isn't walking yet and the pediatrician has told us his muscles are weak. He is being tested for genetic abnormalities and Fragile X syndrome. Mind you, at 14 months he started crawling at 15 months he started pulling up on everything and is now starting to walk along the couch. So he is learning. He is also very sensitive and doesn't eat properly. We are taking him to see an eating team. He is very sensitive and has chronic constipation. For all we know he could be fine but we're kind of playing the waiting game right now because he's so young.

 

[BlueHadeda]

Welcome Phantom!

We all know about that waiting game. I hope your son will turn out to be all fine. Good luck with all of it!

How do you treat your son's constipation? My daughter goes through phases of this. It started when she was only a few weeks old (even though she was exclusively breastfed). Hers are caused by damage to the nerves in her back serving the bowels, due to a tethered cord.

 

[Phantom]

Right now we are giving him this cherry flavored jelly that helps soften his stool, but it isn't really working and its very hard to get him to take it. He will go days pushing. He turns red, moans, pushes like crazy and nothing. Then eventually he will start to sweat and moan and push for a good 5 minutes and a huge (and I mean HUGE) boulder will come out. It looks so painful and I wish I could help him. Then we repeat the pattern. The pediatrician thinks his bowel is weak like his other muscles which is causing it.

 

[BlueHadeda]

Right now we are giving him this cherry flavored jelly that helps soften his stool, but it isn't really working and its very hard to get him to take it. He will go days pushing. He turns red, moans, pushes like crazy and nothing. Then eventually he will start to sweat and moan and push for a good 5 minutes and a huge (and I mean HUGE) boulder will come out. It looks so painful and I wish I could help him. Then we repeat the pattern. The pediatrician thinks his bowel is weak like his other muscles which is causing it.

Yes, that's how my daughter was as a baby!! I too felt so so sorry for her. And the size of what comes out of her now is astonishing, because she was impacted before so her colon is stretched out. I've stopped giving her anything at the moment, so I'm looking for something new to try. If only she would allow me to give her the lactulose suppositories, maybe we'd have more success. Good luck to you, I hope you'll find something that works well for your son!

 

[lilbeanhoping]

Hi ladies.
I just popped in and saw your question about treating constipation.
Have u tried psyllium fibre?
My foster daughter gets super constipated, she's a teenager so we just give her a tablespoon scoop in the am mixed in her cereal and usually another tbsp in her yogurt or applesauce snack later in the day.
You can mix it in with anything.

We started it as my mom actually swears by it. It's an easy on your system type fibre.
It works amazing for her! Shell go pretty much every second day with us doing that andit isn't HUGE. If we don't it's HUGE and hard....like we have to either break it up or let it soak because it won't flush it's that bad.

 

[BlueHadeda]

Hi ladies.
I just popped in and saw your question about treating constipation.
Have u tried psyllium fibre?
My foster daughter gets super constipated, she's a teenager so we just give her a tablespoon scoop in the am mixed in her cereal and usually another tbsp in her yogurt or applesauce snack later in the day.
You can mix it in with anything.

We started it as my mom actually swears by it. It's an easy on your system type fibre.
It works amazing for her! Shell go pretty much every second day with us doing that andit isn't HUGE. If we don't it's HUGE and hard....like we have to either break it up or let it soak because it won't flush it's that bad.

Thanx! I've made a note of that, and will get my daughter some. I'll introduce it slowly though, because she actually gets loads of fibre in already, and doesn't drink enough fluids. So it's a bit of a catch 22. But maybe it'll work as well for her as it's working for your foster daughter.

 

[lilbeanhoping]

Aparently, dont quote me ud have to research, but ive been told with this kind of fibre it doesnt "plug u up" more if u dont drink enough water. Which is why we tried it because at school she doesnt drink that much. Hope it works

 

[sun]

About psyllium - Because it gels (like flax or chia) you can make it into desserts like smoothies and puddings that you can eat with a spoon that are delicious and super good for you. They also give a little more liquids for kiddos that don't drink enough!

 

[Tiff]

Hi Ladies!

We've been in the process of moving so no Internet and I despise trying to type out on my tablet. How is everyone doing?

 

[BlueHadeda]

Aaahhh, this thread died down!

I'm in need of support and was wondering where I could vent when I remembered this post. Not sure if anyone wants revival? Anyway, here goes. My 5-year old son was diagnosed with an extremely rare heartlung disease. He needs futher testing before we'll know exactly how serious his case is. At this point, all I know is that it's incurable, life-threatening and progressive. But, there's a chance that his case might not be as serious, with the hope that it may halt and even maybe improve with correct treatment. I'm hanging onto this, because I don't know how to handle the other option. My daughter's special needs (for which I joined this thread) was never life-threatening. It was rare, it was awful, it took forever to diagnose. And her life aint exactly easy. But we never thought we might loose her altogether.

So I'm hanging on by a thread and was hoping to hear how other mommies cope on those days you don't know how to put one foot in front of the other? How do you lift yourself out of the deep dark pit on those days?

 

[Tiff]

Oh hun, I'm SO sorry!!!

Yes, absolutely vent and post away! I find it hard at times because when I post, her issues seem more real so when I'm low about them (if that makes sense?) I tend to shy away from here.

But how devastating! I'll be keeping you and your family in my thoughts and prayers and I hand on heart hope it will be okay. Post whatever you want, when you want. We'll be here to support you.