Re: 2 weeks of troubles ends in the PICU for Logan

[Guest guest]

,

Just wanted to tell you to be encouraged. We are praying for your

family. Thank you for the update. I am pleased that you were able

to go ahead and d/c the Topamax. I hope that inititating the diet

in the PICU will get Logan back on track. Would you believe that

has HORRIBLE trouble with cutting his teeth too. He really

didn't have seizures, but he regressed developmentally and looked

like a zombie.

Blessings,

> Saturday night we took Logan to Albany Medical Center (AMC) in

> desperation after trying to fight off an increasing number of SZRs

> over 14 days. He was having as many as 20-25 per day increasing in

> severity.

>

> During the 2 weeks our neuro put him back on Topamax. While at AMC

> the dose was increased. Sunday he had 2 SZRs in which he stopped

> breathing. We had dealt with that before the diet. Now we had

> verification from the attending MD and neuro at AMC that the

Topamax

> was causing the lack of breathing. Topamax has been stopped and

added

> to his list of failed meds.

>

> While these changes are being made he is on Ativan 0.5mg IV every

8

> hrs. to cover. He will be weaned off Ativan in hospital.

>

> The dietitian at AMC is restarting Logan on the diet. He is

fasting

> until his ketones are a solid +4 (160). Then we will increase the

> diet 2:1, 3:1 to 4:1 over the following days. He will continue the

> diet on 4:1 but with a reduction of calories (800/day from

927/day).

>

> The dietitian at AMC said that they usually do not increase

calories

> during the first year unless there is a constant weigh loss. This

> were Logan's dad (me) made a terrible mistake in believing that

Logan

> needed more calories to make more ketones and to grow normally.

The

> trouble grew over time even though each increase in calories did

in

> fact increase ketones.

>

> Logan is cutting his 2-year molars. This has lowered his SZR

> threshold bringing the underlying problem to the surface quicker.

> The dietitian said another keto-kid they treat has had

breakthrough

> SZRs with every tooth that came in. She is well controlled on the

> diet the rest of the time on the diet.

>

> Just an update for everyone.

>

>

[Guest guest]

although Logan is still hospitalized it sounds like things are

moving in the correct direction. My son too is on topamax and stops

breathing sometimes during seizures. But I can't remember if one came

before the other... a thought to ponder. Glad to hear the AMC team is

restarting the diet and has some reassuring thoughts about the calorie

intake. I remember someone from the group suggesting that just a short

while ago. Thanks for the update I have been following the troubles.

, mom to Ethan ( 10 months)

2 weeks of troubles ends in the PICU for Logan

Saturday night we took Logan to Albany Medical Center (AMC) in

desperation after trying to fight off an increasing number of SZRs

over 14 days. He was having as many as 20-25 per day increasing in

severity.

During the 2 weeks our neuro put him back on Topamax. While at AMC

the dose was increased. Sunday he had 2 SZRs in which he stopped

breathing. We had dealt with that before the diet. Now we had

verification from the attending MD and neuro at AMC that the Topamax

was causing the lack of breathing. Topamax has been stopped and added

to his list of failed meds.

While these changes are being made he is on Ativan 0.5mg IV every 8

hrs. to cover. He will be weaned off Ativan in hospital.

The dietitian at AMC is restarting Logan on the diet. He is fasting

until his ketones are a solid +4 (160). Then we will increase the

diet 2:1, 3:1 to 4:1 over the following days. He will continue the

diet on 4:1 but with a reduction of calories (800/day from 927/day).

The dietitian at AMC said that they usually do not increase calories

during the first year unless there is a constant weigh loss. This

were Logan's dad (me) made a terrible mistake in believing that Logan

needed more calories to make more ketones and to grow normally. The

trouble grew over time even though each increase in calories did in

fact increase ketones.

Logan is cutting his 2-year molars. This has lowered his SZR

threshold bringing the underlying problem to the surface quicker.

The dietitian said another keto-kid they treat has had breakthrough

SZRs with every tooth that came in. She is well controlled on the

diet the rest of the time on the diet.

Just an update for everyone.

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resort! "

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It is important to get medical advice from a

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[Guest guest]

Hi and Laurie,

I'm so glad to hear from you and get an update on Logan. I've

been checking daily to see if there was any news. I've been worried,

since the last post was about going to the ER for a loading dose of

phenobarb.

I'm sorry to hear things haven't been so good lately. I am glad

to hear that you seem to know the direction to take next. I hope you

aren't blaming yourself, , for your " terrible mistake " . I

understand your reasoning for increasing calories and wanting morning

ketones higher, I would have done the same thing. Didn't it work and

help for a while? As many have said before, there is so much trial

and error in this. The dietitian told you they normally don't raise

calories in the first year of the diet, but I'll bet you could find

plenty who need to and do. If we could neatly apply the same

principles to all our kids, we wouldn't need each other's help.

Logan is a complicated case...as mentioned, the topomax messes

with metabolism and adjusting the doses probably changed the way he

was using the calories. There's no way to know for sure ahead of

time how that was going to affect him.

Logan is lucky to have parents who want a better life for him and

are trying everything they know to do to give it to him. I'll be

thinking of you all and praying for Logan to bounce back quickly.

Please keep us updated.

Glenna

[Guest guest]

Logan was moved to the normal Peds floor yesterday and is progressing

nicely. We will refuse to leave the hospital unless everything is

back on track again.

Thanks to everyone that's wishing him well.

[Guest guest]

Pete and Laurie,

I'm trying to decide if I'm sorry to hear this about Logan... or

not. I hate to hear about the seizures and all, but also have to

think it's good that you have an idea about what was really going

on. A fresh start for a new year... yes!!

Is AMC where you have been going? Are you still going to Boston in

Jan.? At least you are getting some help now. You have done an

awesome job " on your own " but that's not the preferred method of

doing the diet, eh?? Please don't blame yourself for the high

calories. The only sure way to never make a " mistake " is not to

try... that would definitely NOT be you.

We've actually increased 's calories twice since starting the

diet in August. She lost weight initially and gained that back

normally but then stopped gaining any further weight. She started at

1800 cals and is now at 2000. She started gaining slowly at 2000 but

then stopped. However, she had the nasty flu bug and lost weight...

has gained that back but no more. So, I suppose there is a chance

that our dietician will recommend another increase if she doesn't

resume a slow gain. has the kind of metabolism that burns every

calorie, I swear. Totally unlike her mom--LOL!

I hope this new beginning is truly the answer for you. Luckily, you

already know that the diet can work for Logan. We will pray that

those seizure free days are just around the corner.

Happy New Year!!

Cammie

> Saturday night we took Logan to Albany Medical Center (AMC) in

> desperation after trying to fight off an increasing number of SZRs

> over 14 days. He was having as many as 20-25 per day increasing in

> severity.

>

> During the 2 weeks our neuro put him back on Topamax. While at AMC

> the dose was increased. Sunday he had 2 SZRs in which he stopped

> breathing. We had dealt with that before the diet. Now we had

> verification from the attending MD and neuro at AMC that the

Topamax

> was causing the lack of breathing. Topamax has been stopped and

added

> to his list of failed meds.

>

> While these changes are being made he is on Ativan 0.5mg IV every 8

> hrs. to cover. He will be weaned off Ativan in hospital.

>

> The dietitian at AMC is restarting Logan on the diet. He is

fasting

> until his ketones are a solid +4 (160). Then we will increase the

> diet 2:1, 3:1 to 4:1 over the following days. He will continue the

> diet on 4:1 but with a reduction of calories (800/day from 927/day).

>

> The dietitian at AMC said that they usually do not increase

calories

> during the first year unless there is a constant weigh loss. This

> were Logan's dad (me) made a terrible mistake in believing that

Logan

> needed more calories to make more ketones and to grow normally.

The

> trouble grew over time even though each increase in calories did in

> fact increase ketones.

>

> Logan is cutting his 2-year molars. This has lowered his SZR

> threshold bringing the underlying problem to the surface quicker.

> The dietitian said another keto-kid they treat has had breakthrough

> SZRs with every tooth that came in. She is well controlled on the

> diet the rest of the time on the diet.

>

> Just an update for everyone.

>

>