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Re: Pain and other problems...

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so very sorry to hear it, especially since the diet is working for you. I'm

sure someone here will have some ideas for you.

Ally

Pain and other problems...

> My son Shaun has been on the diet since 11/03. He also has CP and

> milk allergy, so its tough. He has been seizure free virtually

> since the beginning. (formerly up to 250 szs per day). So things

> are great, right? No. It has been one trouble after another since

> this began. In February he began lots of crying and we tried to

> figure out what it was. We did bone scans, urine tests, the gamut.

> Nothing to report. He was on polycitra, then urocit but it gave him

> burning esophagitis. Then he was hospitalized with acidosis in

> April. His ratio was lowered to 2.5 and then 2.25 in June. His

> meals are huge since he is so skinny. Hunger is not a problem.

>

> In June he was diagnosed with eosiniphilic esophagitis, an allergic

> condition which can cause pain and poor eating. He is now on meds

> for that and should be improved. He is about 50% better but still

> has a lot of crying. Although he cannot talk and is a poor

> communicator we know he is in pain. He is not able to tell us what

> it is though.

>

> Has any one out there had a successful keto kid, like ours, who was

> in pain because of the diet? He was checked for stones and it was

> negative. Can the diet cause some other pain that is unbearable for

> my son? We don't want to stop the diet since the seizures are gone,

> but his life quality has not improved at all due to his poor

> sleeping and pain.

>

> Has anyone taken their kid off the diet and then gone onto a

> modified keto diet with success?

>

> Thanks for the info.

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

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Our daughter's first year on the diet was painful or some sort of

discomfort. The first month was the most painful. When a child is in pain

on the diet the first thing I suspect is that their stomach and intestinal

system is not feeling well. The high fat can make a child's stomach not

feel well. We added digestive enzymes during the first month. This helped

tremendously and made the diet tolerable but our daughter continued to have

stomach pain especially at night. She also was extremely fatigued the first

year on the diet which is not normal. After a year on the diet we

discovered lactose/dairy was her big culprit. After eliminating cream and

replenishing her with good bacteria she immediately began to gain energy and

feel better in her stomach.

I'm really wondering if Shaun's problems stem from not feeling well in his

stomach. In my opinion it is possible that the diet (especially when

initiated) can wipe out the good bacteria in the gut. Have you tried giving

Shaun probiotics (good bacteria that's lactose free?). I would give this to

him for a month and see if it makes a difference in how he feels. Another

thing you can try are digestive enzymes. This helps in breaking down the

food.

Rhonda (mom to Shan, age 9, keto/atkins over 2 years)

My son Shaun has been on the diet since 11/03. He also has CP and

milk allergy, so its tough. He has been seizure free virtually

since the beginning. (formerly up to 250 szs per day). So things

are great, right? No. It has been one trouble after another since

this began. In February he began lots of crying and we tried to

figure out what it was. We did bone scans, urine tests, the gamut.

Nothing to report. He was on polycitra, then urocit but it gave him

burning esophagitis. Then he was hospitalized with acidosis in

April. His ratio was lowered to 2.5 and then 2.25 in June. His

meals are huge since he is so skinny. Hunger is not a problem.

In June he was diagnosed with eosiniphilic esophagitis, an allergic

condition which can cause pain and poor eating. He is now on meds

for that and should be improved. He is about 50% better but still

has a lot of crying. Although he cannot talk and is a poor

communicator we know he is in pain. He is not able to tell us what

it is though.

Has any one out there had a successful keto kid, like ours, who was

in pain because of the diet? He was checked for stones and it was

negative. Can the diet cause some other pain that is unbearable for

my son? We don't want to stop the diet since the seizures are gone,

but his life quality has not improved at all due to his poor

sleeping and pain.

Has anyone taken their kid off the diet and then gone onto a

modified keto diet with success?

Thanks for the info.

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Most common are reflux and constipation. We try to use non-drug

treatments. Maybe look at increased fluids, spaced out so as not to

decrease ketones. Give some milk of magnesia a couple of times a day.

Elevate the head of the bed. Give some soda water at the end of meals.

Give smaller meals more often, split a meal into 2 snacks.

Bill

philbin108 wrote:

> My son Shaun has been on the diet since 11/03. He also has CP and

> milk allergy, so its tough. He has been seizure free virtually

> since the beginning. (formerly up to 250 szs per day). So things

> are great, right? No. It has been one trouble after another since

> this began. In February he began lots of crying and we tried to

> figure out what it was. We did bone scans, urine tests, the gamut.

> Nothing to report. He was on polycitra, then urocit but it gave him

> burning esophagitis. Then he was hospitalized with acidosis in

> April. His ratio was lowered to 2.5 and then 2.25 in June. His

> meals are huge since he is so skinny. Hunger is not a problem.

>

> In June he was diagnosed with eosiniphilic esophagitis, an allergic

> condition which can cause pain and poor eating. He is now on meds

> for that and should be improved. He is about 50% better but still

> has a lot of crying. Although he cannot talk and is a poor

> communicator we know he is in pain. He is not able to tell us what

> it is though.

>

> Has any one out there had a successful keto kid, like ours, who was

> in pain because of the diet? He was checked for stones and it was

> negative. Can the diet cause some other pain that is unbearable for

> my son? We don't want to stop the diet since the seizures are gone,

> but his life quality has not improved at all due to his poor

> sleeping and pain.

>

> Has anyone taken their kid off the diet and then gone onto a

> modified keto diet with success?

>

> Thanks for the info.

>

>

>

>

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Hi... I just wanted to ask: was the finding of eosiniphils in his esophogus

how

they found out he had a milk allergy? Eosiniphils indicate an allergy, and

usually once the cause of the allergy is gone, the condition improves.

My daughter had eosiniphils found by stomach biopsy (they lost the

esophogus tissue, but they were probably there, too) and was diagnosed with

protien intolerance back in March. It took her a long time, once we switched

her to an amino acid based formula, to fully recover from that. Her doctors

told us it can mess up the motility of the stomach for six months or more, even

once the allergen is gone.

Also, is it possible he is allergic to more than milk? If he hasn't seen an

allergist, you might want to try that route, too.

Good luck!

If the esophogitis was found

> My son Shaun has been on the diet since 11/03. He also has CP and

> milk allergy, so its tough. He has been seizure free virtually

> since the beginning. (formerly up to 250 szs per day). So things

> are great, right? No. It has been one trouble after another since

> this began. In February he began lots of crying and we tried to

> figure out what it was. We did bone scans, urine tests, the gamut.

> Nothing to report. He was on polycitra, then urocit but it gave him

> burning esophagitis. Then he was hospitalized with acidosis in

> April. His ratio was lowered to 2.5 and then 2.25 in June. His

> meals are huge since he is so skinny. Hunger is not a problem.

>

> In June he was diagnosed with eosiniphilic esophagitis, an allergic

> condition which can cause pain and poor eating. He is now on meds

> for that and should be improved. He is about 50% better but still

> has a lot of crying. Although he cannot talk and is a poor

> communicator we know he is in pain. He is not able to tell us what

> it is though.

>

> Has any one out there had a successful keto kid, like ours, who was

> in pain because of the diet? He was checked for stones and it was

> negative. Can the diet cause some other pain that is unbearable for

> my son? We don't want to stop the diet since the seizures are gone,

> but his life quality has not improved at all due to his poor

> sleeping and pain.

>

> Has anyone taken their kid off the diet and then gone onto a

> modified keto diet with success?

>

> Thanks for the info.

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