Picnic: Shall we try again?

[HikingStick]

As you may remember, our attempt to get together last year was
disrupted by a river (one family ended up in the park on the north
side and one ended up in the park on the south side). Is anyone up to
trying again? How does early June sound? Our June weekends are (Sat-
Sun):

5 - 6
12 -13
19 - 20
26 - 27

Should we try for Cannon Falls again, or another location? I believe
we have one new family since last time. Once we know the region of
the state where they live, we could try to pinpoint an area central to
all.

I hope you've managed the winter well and are looking forward to
Spring!

[Jenny Moretter]

I would love to try for another get together this summer.

Please let me know at least 1 month in advance to ensure my husband can request time off from work.

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[Marie Jayne Riemer]

I believe the weekend of the 19-20th is Fathers day Weekend.
 
MJ

Marie J.Riemer mjri...@hotmail.com

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[Lisa]

Sorry I've been out of the loop for awhile. Being we were the family
on the wrong side of the river, we would love to try this again. I
need to check my husband's work schedule and I'll be back in touch
with dates in June that work for us.

Lisa

On Mar 10, 9:31 am, Marie Jayne Riemer <mjrie...@hotmail.com> wrote:
> I believe the weekend of the 19-20th is Fathers day Weekend.
>
> MJ
>

> Marie J.Riemer mjrie...@hotmail.com

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[Jenny Moretter]

Hey everyone,

I need help! We spent Monday night in the ER for 5 hrs with Mackenzie. Our main problem/concern is that she can go over a week where she does not have a bowel movement. It causes her so much pain that she vomits or has to walk crunched over. We have tried Miralax, Benefiber and switching her diet. I have read that children with Soto's Syndrome have a tendency to have this problem. We weekly have to give her enimas so that now every time we take her potty or change her she screams and fights us being she is afraid.

Any recommendations would be greatly appreciated!

[Lisa]

Jenny,

We've struggled with the constipation issues with Gracie too. Here is
the advice we were given and it has worked well. You may have already
tried it though.

Day #1:
1 Full Cap of Miralax in 6 - 8 ounces of Orange Juice
If no success, give one Exlax chocolate square
If no success, give another 1/2 cap of Miralax in 6 - 8 ounces of
Orange Juice

Day #2
1 Full Cap of Miralax in 6 - 8 ounces of Orange Juice
If no success, give one Exlax chocolate square
If no success, give another 1/2 cap of Miralax in 6 - 8 ounces of
Orange Juice

Day #3
1 Full Cap of Miralax in 6 - 8 ounces of Orange Juice
If no success, give one Exlax chocolate square
If no success, give another 1/2 cap of Miralax in 6 - 8 ounces of
Orange Juice

If she has success on any of these days...just give 1/2 capful of
Miralax daily with juice for 1 to 2 months. Even if the bowel
movements are super soft...continue to do the daily half cap of
Miralax.

If at any time you see a relapse, start over with Day #1.

We've also added blueberries to her diet - that really has helped.
They also recommended adding flax seed to food products when baking.
Juice of course. I also find luck with having her eat graham crackers
for snacks...and All Bran makes a really high fiber snack cracker that
she really likes.

This has really helped us get a handle on things. I hope it works for
Mackenzie too. Poor kiddo.

As for Mackenzie fighting you for changing, etc. Gracie did that for
a while too, I found that it helped if I stopped and explained to her
we were going to change her diaper but there would be "no owies",
before we even layed her down for the diaper change.

Lisa

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[Jenny Moretter]

Can you use apple juice instead of orange juice?

[HikingStick]

In our experience, the beverage doesn't matter, just so long as we get
Gideon his Miralax regularly. We'll mix it in juice (any kind), milk,
or his favorite, iced tea. As you've probably noticed, however, each
of our kids struggles more or less in different areas, so you'll need
to find what works for you.

When Gideon was young (in his first year), we actually had to
stimulate his rectum with a gloved finger, to get him to pass stool.
Check with your doctor to see if that might work, or whether laxative
suppositories might be an alternative to an enema.

Diet can be a big factor, too. If Gideon is getting blocked up, we
avoid cheese.

AJR

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[Jenny Moretter]

Thank you for your suggestions. I am going to increase the Miralax and also cut dairy out a little for her.

[HikingStick]

For us, it was only cheese that seemed to block Gideon up. Milk and
yogurt had little or no impact.

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[Jenny Moretter]

Mackenzie eats very little cheese but drinks milk often. The doctor told us to cut back on the milk and get her to eat more fruits and vegetables like:

Peas, green beans, peaches, pears, pear juice, bran foods, no white bread, apples or banana's.

[Lisa]

Jenny,

A couple of other foods to try if Mackenzie likes them is blueberries
(they do make the stool quite dark so don't be alarmed) and baking
with flax seed. Any chance Mackenzie could be intollerant to dairy
products? I know that is the cause in 70% of babies that are
constipated -- an intolerance to cow's milk. My daughter is one of
those kids - we've had her on soy milk/formula since she was 2-1/2
months old. We try to reincorporate in her diet every once in awhile
without success.

Lisa

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[Jenny Moretter]

Mackenzie actually just got out of the hospital on Tuesday. We took her to the doctor on Saturday morning at Park Nicollet in Shakopee being she was having stomach pain and not passing stool. They were once again going to send her home and told us to increase the Miralax. We demanded they admit her to the hospital. They admitted her to St. Francis on Saturday and started her on Go-Likely which basically is a drug that helps cleanse out the system. It seemed to work a little but not much help. Mackenzie's stomach looked like that of a pregnant 4 year old child. It was so distended. After being at St. Francis from Sat-Monday, they finally decided to send her to Children's Hospital in Minneapolis. I have to say this is the best hospital ever, they were great with my daughter and with us. We met with Dr. Franzen who is a Peds GI doctor. He determined she had so much backed up stool that it would not pass thru normally even with suppositories, enimas, etc. They did surgery on Tuesday morning and sent her home that evening. She still has a lot of gas pain and is absolutely now afraid to eat or drink anything but making progress slowly.

We are going to try switching her diet and increasing the Miralax intake going forward. They basically stressed to us that children that have a fear of passing stool are more likely to take longer to potty train. They recommended we first try helping her to know it is ok to potty even in a diaper. Then work with her on potty training. She has such a fear of doing it that she will hold it in for days even if it causes her pain.

Nothing is more sad than looking at your child suffer from constipation and knowing that it could have been prevented or something. We hope none of you have to go thru the same problems we have!

[HikingStick]

Our son gets that "pregnant belly" look from time to time, mostly when
we have missed his Miralax dosages (or let him eat too much cheese).
Hopefully Mackenzie will heal well, and the tweaks to her intake will
help her start out on a more normal pattern.

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[Lisa]

Jenny,

So sorry to hear of everything Mackenzie has gone through. Poor
little pumpkin. I hope she is healing okay and is starting to feel
more comfortable eating and drinking. What did her doctor suggest for
Miralax intake on a daily basis? We do a half a cap a day with our
daughter and that keeps things flowing quite nicely for her. We are
lucky that she likes fruits and veggies and many times that is the
first thing she goes for on her plate.

Lisa

[Lisa]

The weekend of June 5/6 and 12/13 would work for us at this point. I
do have a couple of nieces and nephews graduating and I haven't heard
dates from them yet.

Lisa

[Jenny Moretter]

Would May work for everyone by chance?

-----Original Message-----
From: sotos-syndrom...@googlegroups.com [mailto:sotos-syndrom...@googlegroups.com] On Behalf Of Lisa
Sent: Tuesday, March 30, 2010 12:44 PM
To: Sotos Syndrome Families (MN)
Subject: [MN Sotos Syndrome Families] Re: Picnic: Shall we try again?

Lisa

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[Jenny Moretter]

Mackenzie is doing much better. We do give her a half cap full in water which is helping. We have also switched her to a lot of Fiber 1 foods, like granola bars, crackers and cereal. We started cooking with Flax seed which is great and she can not taste anything. So far it is all working!!

Thank you all for your suggestions!

Jenny,

Lisa

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[HikingStick]

My wife and I have plans on the weekend of the 15th, and possible
plans on Memorial Day weekend (most parks are packed then anyway).
Saturday the 22nd or Sunday the 23rd might be options.

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