All About Autism

[ImMeeMee]

it is one of those bad days. she seems to go back to her spinning of objects and being obsessed with light and sound.


a bout of diarrhoea and fever seem to have brought the efforts that we have put in and the joy that we have gathered this while to a zip.

this has been my greatest fear and it is happening now. somehow i have been expecting that one day it would happen. its just natural progression that she may go through this before the next quantum leap. just that when it happens it is such an emotional rollercoaster ride for me.

I feel great sadness in me, seeing that she is trapped in her world and that I am not able to reach out to her to help her.

such is the sense of loss that I become trapped in kubler’s grief again.

[Blobbi]

Hugs to you, IMM.


I’m sending you a PM.

[Sun_2010]

ImMeeMee,


Try letting go of the helplessness.

U r a wonderful mother and she is a beautiful child. And that is all that matters

:grphug:

[schweppes]

ImMeeMee:

it is one of those bad days. she seems to go back to her spinning of objects and being obsessed with light and sound.


a bout of diarrhoea and fever seem to have brought the efforts that we have put in and the joy that we have gathered this while to a zip.

I'm not a medical practitioner, just wondering, was your dd on antibiotics? Could it have caused her to revert to \"old\" ways?

In the early years, I observed that dd would have mood swings and meltdowns whenever she was on antibiotics. I'm not sure if this is the case with every child, but it was what I noticed in my own kid.

It got better when she was older. So, if she has to take antibiotics, I try to get her to drink as much water after that - to flush it out of the system. I also get her to take probiotics (you can try Culturelle or Threelac) to help the good bacteria to grow in her gut. Found that this helped to balance the intestinal system for my child.

ImMeeMee:

this has been my greatest fear and it is happening now. somehow i have been expecting that one day it would happen. its just natural progression that she may go through this before the next quantum leap. just that when it happens it is such an emotional rollercoaster ride for me.

I feel great sadness in me, seeing that she is trapped in her world and that I am not able to reach out to her to help her.

such is the sense of loss that I become trapped in kubler's grief again.

I can understand that you are very disheartened and discouraged now. It is an emotional roller coaster ride. There will be days when they child will regress BUT after going through this difficult spell, the child WILL leapfrog and progress.

You would think the child has progressed and there is this glimmer of hope, and then suddenly you feel as if you have fallen into the dark hole again. But somehow, before you know it, the child seems to have improved and moved forward again.

It's really an up and down journey. And it's emotionally exhausting and physically tiring. I know it is easier said than done, but do hang in there and don't give up. Our kids need us to stay strong to help them get better.

:hugs:

[ImMeeMee]

Dear Blobbi, Sun_2010 and schweppes, thanks for the encouragement. I do believe that the child will get better after hitting the bottom, just that it is difficult to cope with the emotional distress as a parent at that particular point. It is painful to see your child trapped and feel helpless about it.


schweppes, I have not put her on antibiotics. in fact, we are scratching our heads as to why she was having diarrhoea, as her diet was not out of ordinary for the last few days. Our only speculation is that she may have contaminated something while putting things into her mouth which she sometimes does.

one question. how do you manage your kids’ medicines if you are putting him/her on GFCF diet? Do the medicines contain gluten or casein, and how do you cope? I put her on panadol syrup to control her fever, but realise that the syrup was quite sticky in consistency, so suspect that there could be gluten.

TIA for advice.

[cnimed]

Hi, most syrups are made from wheat or corn. I had to search really hard to find sweets made only from rice malt or sugarcane for my kid. Another consideration is the coloring.


hth.

[autumnbronze]

ImMeeMee:

it is one of those bad days. such is the sense of loss that I become trapped in kubler's grief again.

Hi ImMeeMee,

Just chanced upon your post.

Loads of :hugs: to you.

I really like this quote from Schweppes:

There will be days when they child will regress BUT after going through this difficult spell, the child WILL leapfrog and progress.

Hope this brings some measure of comfort to you.

[schweppes]

ImMeeMee:

schweppes, I have not put her on antibiotics. in fact, we are scratching our heads as to why she was having diarrhoea, as her diet was not out of ordinary for the last few days. Our only speculation is that she may have contaminated something while putting things into her mouth which she sometimes does.

one question. how do you manage your kids' medicines if you are putting him/her on GFCF diet? Do the medicines contain gluten or casein, and how do you cope? I put her on panadol syrup to control her fever, but realise that the syrup was quite sticky in consistency, so suspect that there could be gluten.

TIA for advice.

Hey IMM,
My child is not on a GFCF diet. I tried that when she was between 3-5yo, but it was really difficult to administer. So, in the end, had to give up the idea.

But I do take note of what she eats and what are some of the trigger foods. Excessive intake of sweets and chocolates lead to meltdowns. It's been said that foods high in salicyliates are trigger foods that may affect the child's behaviour and learning ability.

However, even since I discovered Enzyme Therapy, I noticed that it has helped manage her behaviour better. The enzymes help to break down the food better for better absorption and digestion.

Hope that helps.

[schweppes]

ImMeeMee:

I do believe that the child will get better after hitting the bottom, just that it is difficult to cope with the emotional distress as a parent at that particular point. It is painful to see your child trapped and feel helpless about it.

Going through the bad spell can be a difficult period. It's like a \"what have I done wrong\" feeling. You go through so many emotions like \"I thought he/she is improving\", \"will it get better?\"

I tell myself that I have to stay strong, people tell me that I have to stay strong. But sometimes, it's anything but. Really easier said than done.

And yet, we have to stay strong. When I read LKY's interview with the NY Times, and the interviewer asked how he copes watching his wife suffers and he replied, \"what can I do? Life goes on\". That really struck a chord in me.

I can imagine what he must be going through, watching his loved one suffer and feeling helpless. Guess that's what us mothers and fathers go through as well, when we watch our child or a loved one suffer. \"What else can I do?\" Do I feel like it's doom and gloom sometimes? Yes. But, still, we soldier on. And we try to hang in there. And pray that the good times will come again.

I don't mean to get all religious here but for me, faith was what pulled me through. I'm not a deeply religious person, but as a Catholic, I prayed very hard - for strength, for faith. I really believe that it is with Divine intervention and family support that I have the strength to carry on helping my child.

Just my humble sharing...

[ImMeeMee]

[quote=\"schweppes

Hey IMM,
My child is not on a GFCF diet. I tried that when she was between 3-5yo, but it was really difficult to administer. So, in the end, had to give up the idea.

But I do take note of what she eats and what are some of the trigger foods. Excessive intake of sweets and chocolates lead to meltdowns. It's been said that foods high in salicyliates are trigger foods that may affect the child's behaviour and learning ability.

However, even since I discovered Enzyme Therapy, I noticed that it has helped manage her behaviour better. The enzymes help to break down the food better for better absorption and digestion.

Hope that helps. [/quote]

thanks schweppes. i guess the concept remains to cut the supply of gluten, casein and salicylates in the diet, either by abstinence or by intervention with enzyme therapy for further breakdown.

our current challenge pertains to salicylates as they seem to be everywhere, even in fruits. after cutting gluten and casein and if we cut salicylates further it seems as if dd has nothing else left to eat.

so we are currently considering enzyme therapy but we are still in the process of convincing ourselves on the risk-benefit ratio.