CF diet - I'm not sure how much longer I can do this

cruelshoes · Joined: 23 Sep 2005 Posts: 2174 Location: Washington State

Sean has been completely CF since 1/15. His Neurologist asked that we put him on a CF diet to see if it helps with his small motor coordination disorder. I am scrutinizing everything that comes into the house and goes into his mouth.

We have seen absolutely no change in Sean's coordination, behavior or moods. He is exactly the same kid he was before we started, only with a more restricted diet. He is frustrated. He said to me the other day "mom - this isn't helping me at all. I still can't write." I am frustrated because I knew it wasn't going to help. But I told the neurologist I would try it until our next appointment on 3/5.

This post has no point other than to say I'm not sure I can keep this up until 3/5. This sucks.
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-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

isto · Joined: 30 Sep 2005 Posts: 1029 Location: OHIO

Colleen, I know I would be pulling my hair out, too! You are stressed about your son and adding the CF issue compounds the stress. I can see where it would be very frustrating.

Hang in there! You only have a couple more weeks to go!
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nancw · Joined: 04 Oct 2006 Posts: 727 Location: Denver, CO

Hey Colleen,

I feel your pain. When I cut out dairy/casein I had an immediate improvement in sx's. Now, I did take out a corn, beans, nightshades and dairy all at the same time so it was hard to say "I feel better because I'm not consuming dairy". On the other hand, now, when I do get dairy via cc or just "I'm sick of dairy free so I'll take my chances" I definitely feel really bad. Of course, I'm not cutting it out for same reasons your son is, so all I can do is offer you support and hope that you do find out if any dietary restrictions help.
My understanding is that it can take many, many weeks to see improvement from removal of dairy. Hang in there for a couple more weeks. Maybe it isn't an issue - the only one who will really know is your son.
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Nance

gluten, dairy, soy, rice, corn, yeast and 99% grain-free

Linda

aklap · Joined: 02 Oct 2004 Posts: 7855 Location: WI, USA

Sorry to hear this Colleen. Unfortunately neurological issues [which this might be] can be slow to correct themselves. One month, may not be anywhere near enough time to tell. It may take months or years to see improvements.

Keep at it...I know it can't be easy!

Hugs to you and Sean!
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1400 Location: GF Kitchen

Colleen, I am sorry it is so stressful for you and your son. I am also hoping that it is March 5 and not May 3!!! I hope you get some answers soon.

ISTO......... somehow I missed that congratulations are in order. CONGRATULATIONS!!!!!
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isto · Joined: 30 Sep 2005 Posts: 1029 Location: OHIO

cruelshoes · Joined: 23 Sep 2005 Posts: 2174 Location: Washington State

Linda · Posted: Sun Feb 24, 2008 11:36 pm Post subject:

Colleen, maybe have him try writing with a pen or pencil that's short. Half the usual size, the size of a crayon. I know a girl with Down Syndrome and she finds it much easier to print with a small pencil than a full sized one. Also, some kids find it easier to hold a pencil if they have a pencil grip at the bottom. They are usually triangular and made of hard foam.
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Mom of Ty (he's eight) who was diagnosed by bloodwork June 2005, biopsy August 11, 2005, notified on & started GF August 18, 2005

celiacmaine-iac · Joined: 19 Dec 2007 Posts: 433 Location: Maine

ostrich · Joined: 30 Mar 2006 Posts: 3758 Location: Nebraska

Second what Steph said above. Hang in there Colleen! Even if it doesn't work, at least you can say you tried the diet for the full extent of time. Sad

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Ostrich :>--O==={

I lie below, you float above
In the pretty white ships that I am dreaming of

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1400 Location: GF Kitchen

I don't know if this would help or not Colleen. When my MIL was going to therapy after her fall that hurt her hand (among other things) they had her do a fine motor skills exercise that she said sounds so easy but is so frustratingly difficult, but it helped.

They have a huge box of rice and they had about 20-25 small object hidden in the rice that she had to find one hand at the time. (paperclip, penny, a jack, marble and so on.) Once she found them all with one hand, they put them in and hid them again for her to find with the other hand.

I was to strengthen her fingers so that she could write and type.

I would think therapy would be a good place to start also.
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cruelshoes · Joined: 23 Sep 2005 Posts: 2174 Location: Washington State

We just got back from the Neurologist. He agreed with us that if we haven't seen any changes by now, there probably aren't going to be any. He suggested introducing dairy back in and see if we see any negative changes. He said that sometimes changes are so subtle that you don't notice them until you introduce the offensive ingredient back in.

I can't decide what dairy filled item to make for dinner. Mac and Cheese? Cheese Enchiladas? Ice cream sundaes with whipped cream and a stick of butter on top!?!?!?!?

Thanks for the support, ladies and gents. I couldn't have made it through without your help.
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-Colleen
Dx 8/05 via bloodwork/biopsy
9-YO son Dx 11/05 via bloodwork/biopsy
Daughters have negative bloodwork - so far!

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

aklap · Joined: 02 Oct 2004 Posts: 7855 Location: WI, USA

Kathie · Joined: 27 Jan 2006 Posts: 681 Location: Florida

I vote for the ice cream sundae myself, but I'll pass on the stick of butter. Very Happy

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CD by Biopsy 3/25/88