Something's up with Lily - Any help appreciated.

[Guest guest]

Anyone with any thoughts, please post a reply! Lily has been in and

out of the hospital recently. A quick recap: She was irritable and

looked like she was in discomfort last Thursday, (shaking and grinding

her teeth, wringing her hands) so I took her to the pediatrician. She

didn't see anything really wrong, but prescribed Zithromax for

sinusitis (Lily had some minor symptoms). I didn't think that was it,

but we gave it to her. She started throwing up that afternoon, again

Friday evening, Saturday she seemed a little better, but threw up

again. She wasn't really taking her fluids as she should have been.

Sunday she was lethargic and very sleepy. She threw up that afternoon

and we went to the ER. They put her on an IV and she seemed a little

better.

She had a sub-normal temp, but only be a degree or so, no rashes,

nothing else that jumped out at us. Her tests didn't reveal anything

troubling, even her sodiums were OK when she came in.

She is currently weaning from the last bit of Topamax. She was on 15

mg BID and is down to 15 mg at night. I asked the Dr. last week if

that could be it and she looked at me like I was crazy. Thank

goodness, she hasn't been having seizures through all this, only 1

last Friday. She is very touch defensive now, looks like she is in

discomfort/distress, still lightly scratching at her hands, her hands

tremor a bit, she is moaning/crying a bit, overall, just miserable.

If anyone can offer any thoughts/insight I would be very grateful.

Thanks,

Caitlin

[Guest guest]

My daughter had that low temperature symptom when she was very

dehydrated after a similar bout of flu, vomiting and diarrhea. Didn't

even register on the digital thermometer.

The distress could be from withdrawal of the topomax. What's happening

with her ketones? This med interferes with the diet, so you might have

to adjust ratio, calories, etc. to get things stabilized. Maybe others

here have a direct experience with it.

Bill

cchatch1402 wrote:

>

> Anyone with any thoughts, please post a reply! Lily has been in and

> out of the hospital recently. A quick recap: She was irritable and

> looked like she was in discomfort last Thursday, (shaking and grinding

> her teeth, wringing her hands) so I took her to the pediatrician. She

> didn't see anything really wrong, but prescribed Zithromax for

> sinusitis (Lily had some minor symptoms). I didn't think that was it,

> but we gave it to her. She started throwing up that afternoon, again

> Friday evening, Saturday she seemed a little better, but threw up

> again. She wasn't really taking her fluids as she should have been.

> Sunday she was lethargic and very sleepy. She threw up that afternoon

> and we went to the ER. They put her on an IV and she seemed a little

> better.

>

> She had a sub-normal temp, but only be a degree or so, no rashes,

> nothing else that jumped out at us. Her tests didn't reveal anything

> troubling, even her sodiums were OK when she came in.

>

> She is currently weaning from the last bit of Topamax. She was on 15

> mg BID and is down to 15 mg at night. I asked the Dr. last week if

> that could be it and she looked at me like I was crazy. Thank

> goodness, she hasn't been having seizures through all this, only 1

> last Friday. She is very touch defensive now, looks like she is in

> discomfort/distress, still lightly scratching at her hands, her hands

> tremor a bit, she is moaning/crying a bit, overall, just miserable.

>

> If anyone can offer any thoughts/insight I would be very grateful.

>

> Thanks,

>

> Caitlin

>

>

>

>

>

>

[Guest guest]

On another thought, maybe her ketones are increasing with the lowering

of the topomax. The symptoms could be from ketones being too high.

I don't know Zithromax. If it is an antibiotic, you will have to deal

with the problems it creates for digestion.

Bill

cchatch1402 wrote:

>

> Anyone with any thoughts, please post a reply! Lily has been in and

> out of the hospital recently. A quick recap: She was irritable and

> looked like she was in discomfort last Thursday, (shaking and grinding

> her teeth, wringing her hands) so I took her to the pediatrician. She

> didn't see anything really wrong, but prescribed Zithromax for

> sinusitis (Lily had some minor symptoms). I didn't think that was it,

> but we gave it to her. She started throwing up that afternoon, again

> Friday evening, Saturday she seemed a little better, but threw up

> again. She wasn't really taking her fluids as she should have been.

> Sunday she was lethargic and very sleepy. She threw up that afternoon

> and we went to the ER. They put her on an IV and she seemed a little

> better.

>

> She had a sub-normal temp, but only be a degree or so, no rashes,

> nothing else that jumped out at us. Her tests didn't reveal anything

> troubling, even her sodiums were OK when she came in.

>

> She is currently weaning from the last bit of Topamax. She was on 15

> mg BID and is down to 15 mg at night. I asked the Dr. last week if

> that could be it and she looked at me like I was crazy. Thank

> goodness, she hasn't been having seizures through all this, only 1

> last Friday. She is very touch defensive now, looks like she is in

> discomfort/distress, still lightly scratching at her hands, her hands

> tremor a bit, she is moaning/crying a bit, overall, just miserable.

>

> If anyone can offer any thoughts/insight I would be very grateful.

>

> Thanks,

>

> Caitlin

>

>

>

>

>

>

[Guest guest]

Hi Caitlin, I pray you figure this out soon. Good thing the seizures

are staying away. Sorry I don't have any answers.

Satnam, mom to Kristan, 23 months

Keto kid since August 2003 and currently weaning from the diet

>

> Anyone with any thoughts, please post a reply! Lily has been in

and

> out of the hospital recently. A quick recap: She was irritable

and

> looked like she was in discomfort last Thursday, (shaking and

grinding

> her teeth, wringing her hands) so I took her to the pediatrician.

She

> didn't see anything really wrong, but prescribed Zithromax for

> sinusitis (Lily had some minor symptoms). I didn't think that was

it,

> but we gave it to her. She started throwing up that afternoon,

again

> Friday evening, Saturday she seemed a little better, but threw up

> again. She wasn't really taking her fluids as she should have

been.

> Sunday she was lethargic and very sleepy. She threw up that

afternoon

> and we went to the ER. They put her on an IV and she seemed a

little

> better.

>

> She had a sub-normal temp, but only be a degree or so, no rashes,

> nothing else that jumped out at us. Her tests didn't reveal

anything

> troubling, even her sodiums were OK when she came in.

>

> She is currently weaning from the last bit of Topamax. She was on

15

> mg BID and is down to 15 mg at night. I asked the Dr. last week if

> that could be it and she looked at me like I was crazy. Thank

> goodness, she hasn't been having seizures through all this, only 1

> last Friday. She is very touch defensive now, looks like she is in

> discomfort/distress, still lightly scratching at her hands, her

hands

> tremor a bit, she is moaning/crying a bit, overall, just

miserable.

>

> If anyone can offer any thoughts/insight I would be very grateful.

>

> Thanks,

>

> Caitlin

[Guest guest]

Thank you so much for replying. Lily has pan-hypopituitarism, so her

temp control is a a bit off to start with. She had a flu shot, so

maybe she had a slight reaction to that. In fact, I thought that was

what it was initially, since she had mild sniffles and a very slight

cough. It could be a stomach bug, which is what they ended up

thinking it was.

I haven't checked her ketones, but will do so today. I suspect they

are 80-160. She has no trouble staying in ketosis and she has been

seizure-free.

Her nanny suggested that she might be hungry as well. She is ina

taper from a stress dose of cortef (steroid - adrenaline replacement)

and maybe that's making her hungry. I don't want to feed her more if

that's the case.

I was wondering about the Topamax. I would like to see her off it

completely. Any idea how long the reaction should last, if that's

what this is?

Caitlin

> >

> > Anyone with any thoughts, please post a reply! Lily has been in

and

> > out of the hospital recently. A quick recap: She was irritable

and

> > looked like she was in discomfort last Thursday, (shaking and

grinding

> > her teeth, wringing her hands) so I took her to the pediatrician.

She

> > didn't see anything really wrong, but prescribed Zithromax for

> > sinusitis (Lily had some minor symptoms). I didn't think that was

it,

> > but we gave it to her. She started throwing up that afternoon,

again

> > Friday evening, Saturday she seemed a little better, but threw up

> > again. She wasn't really taking her fluids as she should have

been.

> > Sunday she was lethargic and very sleepy. She threw up that

afternoon

> > and we went to the ER. They put her on an IV and she seemed a

little

> > better.

> >

> > She had a sub-normal temp, but only be a degree or so, no rashes,

> > nothing else that jumped out at us. Her tests didn't reveal

anything

> > troubling, even her sodiums were OK when she came in.

> >

> > She is currently weaning from the last bit of Topamax. She was on

15

> > mg BID and is down to 15 mg at night. I asked the Dr. last week

if

> > that could be it and she looked at me like I was crazy. Thank

> > goodness, she hasn't been having seizures through all this, only 1

> > last Friday. She is very touch defensive now, looks like she is

in

> > discomfort/distress, still lightly scratching at her hands, her

hands

> > tremor a bit, she is moaning/crying a bit, overall, just

miserable.

> >

> > If anyone can offer any thoughts/insight I would be very grateful.

> >

> > Thanks,

> >

> > Caitlin

> >

> >

> >

> >

> >

> >

[Guest guest]

If the topomax is giving a withdrawal effect, I don't know how long. If

it is interfering with the diet, then you would have to make permanent

changes to the diet.

Bill

cchatch1402 wrote:

>

> Thank you so much for replying. Lily has pan-hypopituitarism, so her

> temp control is a a bit off to start with. She had a flu shot, so

> maybe she had a slight reaction to that. In fact, I thought that was

> what it was initially, since she had mild sniffles and a very slight

> cough. It could be a stomach bug, which is what they ended up

> thinking it was.

>

> I haven't checked her ketones, but will do so today. I suspect they

> are 80-160. She has no trouble staying in ketosis and she has been

> seizure-free.

>

> Her nanny suggested that she might be hungry as well. She is ina

> taper from a stress dose of cortef (steroid - adrenaline replacement)

> and maybe that's making her hungry. I don't want to feed her more if

> that's the case.

>

> I was wondering about the Topamax. I would like to see her off it

> completely. Any idea how long the reaction should last, if that's

> what this is?

>

> Caitlin

>

>

>

>>

>>>Anyone with any thoughts, please post a reply! Lily has been in

>>

> and

>

>>>out of the hospital recently. A quick recap: She was irritable

>>

> and

>

>>>looked like she was in discomfort last Thursday, (shaking and

>>

> grinding

>

>>>her teeth, wringing her hands) so I took her to the pediatrician.

>>

> She

>

>>>didn't see anything really wrong, but prescribed Zithromax for

>>>sinusitis (Lily had some minor symptoms). I didn't think that was

>>

> it,

>

>>>but we gave it to her. She started throwing up that afternoon,

>>

> again

>

>>>Friday evening, Saturday she seemed a little better, but threw up

>>>again. She wasn't really taking her fluids as she should have

>>

> been.

>

>>>Sunday she was lethargic and very sleepy. She threw up that

>>

> afternoon

>

>>>and we went to the ER. They put her on an IV and she seemed a

>>

> little

>

>>>better.

>>>

>>>She had a sub-normal temp, but only be a degree or so, no rashes,

>>>nothing else that jumped out at us. Her tests didn't reveal

>>

> anything

>

>>>troubling, even her sodiums were OK when she came in.

>>>

>>>She is currently weaning from the last bit of Topamax. She was on

>>

> 15

>

>>>mg BID and is down to 15 mg at night. I asked the Dr. last week

>>

> if

>

>>>that could be it and she looked at me like I was crazy. Thank

>>>goodness, she hasn't been having seizures through all this, only 1

>>>last Friday. She is very touch defensive now, looks like she is

>>

> in

>

>>>discomfort/distress, still lightly scratching at her hands, her

>>

> hands

>

>>>tremor a bit, she is moaning/crying a bit, overall, just

>>

> miserable.

>

>>>If anyone can offer any thoughts/insight I would be very grateful.

>>>

>>>Thanks,

>>>

>>>Caitlin

>>>

>>>

>>>

>>>

>>>

>>>

[Guest guest]

Caitlin,

I think your question to the doctor about Topamax was a good one. I

really hate it when they look at you like that as if to say, " Of

course it's not the Topamax " . To me, it's the most logical thing to

think of because it's something that's changing (for the better, we

hope, but still changing). Add to that Lily's temp. control

situation and it gets even more logical. One of the big warnings

about Topamax is that it can cause a temperature control problem on

the overheating side. I'm thinking that if she's adjusted in her own

way to the Topamax and now it's going away, she's having to adjust

again and is probably doing it more slowly than others would because

of her own temp. regulation issue. Sure, it's possible that this

isn't the cause, but to me it makes sense to consider it.

Also, Topamax can make one more acidotic, which is someting to keep

an eye on with keto. Both together often cause too much acidity.

Again, as you wean the Topamax, her body has to adjust--even if she

was compensating for the acidity of both diet and Top., now it's a

change again. You may need to look at some fine-tuning now that she's

coming off the Topamax. I can't remember how long Lily has been on

keto. I'm assuming she's been on the Topamax since she started the

diet?? When she was in the hospital, did they test blood gases?

If it were me, I would have said, " no thanks " to the Zithromax--at

least for now. It is a potent antibiotic which will kill all the

normal bacteria in the digestive tract. That can present a whole new

set of problems, especially if she did actually have a stomach " bug "

(which is almost always a virus and won't respond at all to

antibiotics). I am a microbiologist and have seen first hand how

bacteria quickly become resistant to drugs. Then we have to create

more " powerful " drugs and it becomes a vicious circle. Antibiotics

are wonderful drugs when they are prescribed correctly. When they

are not, they can cause more problems than they solve.

When you say that Lily is " touch defensive " and in " discomfort " it

makes me wonder about an allergic type reaction. Anything new

recently? foods? lotions? meds? Are you keeping a keto journal to

help you keep track of the diet? Often you can see a pattern by

going back over that information if you have it. I also can't

remember Lily's age... can she describe how she feels or do you have

to go on Mommy intuition?

It's great that she's remained seizure free, especially with the

Topamax wean. I know you want to get this figured out and I'm sure

you will. Keep us posted.

Cammie

> > >

> > > Anyone with any thoughts, please post a reply! Lily has been

in

> and

> > > out of the hospital recently. A quick recap: She was

irritable

> and

> > > looked like she was in discomfort last Thursday, (shaking and

> grinding

> > > her teeth, wringing her hands) so I took her to the

pediatrician.

> She

> > > didn't see anything really wrong, but prescribed Zithromax for

> > > sinusitis (Lily had some minor symptoms). I didn't think that

was

> it,

> > > but we gave it to her. She started throwing up that afternoon,

> again

> > > Friday evening, Saturday she seemed a little better, but threw

up

> > > again. She wasn't really taking her fluids as she should have

> been.

> > > Sunday she was lethargic and very sleepy. She threw up that

> afternoon

> > > and we went to the ER. They put her on an IV and she seemed a

> little

> > > better.

> > >

> > > She had a sub-normal temp, but only be a degree or so, no

rashes,

> > > nothing else that jumped out at us. Her tests didn't reveal

> anything

> > > troubling, even her sodiums were OK when she came in.

> > >

> > > She is currently weaning from the last bit of Topamax. She was

on

> 15

> > > mg BID and is down to 15 mg at night. I asked the Dr. last

week

> if

> > > that could be it and she looked at me like I was crazy. Thank

> > > goodness, she hasn't been having seizures through all this,

only 1

> > > last Friday. She is very touch defensive now, looks like she

is

> in

> > > discomfort/distress, still lightly scratching at her hands, her

> hands

> > > tremor a bit, she is moaning/crying a bit, overall, just

> miserable.

> > >

> > > If anyone can offer any thoughts/insight I would be very

grateful.

> > >

> > > Thanks,

> > >

> > > Caitlin

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thanks, everyone. Lily has calmed down a bit and is resting. I

checked her ketones and they were only trace. yikes! I suppose it's

no wonder with all she's gone through that her diet would be out of

whack.

Her neuro called and said if she's doing badly or if she vomits again,

to bring her to him at his hospital, which is a good one. Geisinger,

for those who might know.

Anyway, fingers crossed....

Caitlin

> > > >

> > > > Anyone with any thoughts, please post a reply! Lily has been

> in

> > and

> > > > out of the hospital recently. A quick recap: She was

> irritable

> > and

> > > > looked like she was in discomfort last Thursday, (shaking and

> > grinding

> > > > her teeth, wringing her hands) so I took her to the

> pediatrician.

> > She

> > > > didn't see anything really wrong, but prescribed Zithromax for

> > > > sinusitis (Lily had some minor symptoms). I didn't think that

> was

> > it,

> > > > but we gave it to her. She started throwing up that

afternoon,

> > again

> > > > Friday evening, Saturday she seemed a little better, but

threw

> up

> > > > again. She wasn't really taking her fluids as she should have

> > been.

> > > > Sunday she was lethargic and very sleepy. She threw up that

> > afternoon

> > > > and we went to the ER. They put her on an IV and she seemed a

> > little

> > > > better.

> > > >

> > > > She had a sub-normal temp, but only be a degree or so, no

> rashes,

> > > > nothing else that jumped out at us. Her tests didn't reveal

> > anything

> > > > troubling, even her sodiums were OK when she came in.

> > > >

> > > > She is currently weaning from the last bit of Topamax. She

was

> on

> > 15

> > > > mg BID and is down to 15 mg at night. I asked the Dr. last

> week

> > if

> > > > that could be it and she looked at me like I was crazy. Thank

> > > > goodness, she hasn't been having seizures through all this,

> only 1

> > > > last Friday. She is very touch defensive now, looks like she

> is

> > in

> > > > discomfort/distress, still lightly scratching at her hands,

her

> > hands

> > > > tremor a bit, she is moaning/crying a bit, overall, just

> > miserable.

> > > >

> > > > If anyone can offer any thoughts/insight I would be very

> grateful.

> > > >

> > > > Thanks,

> > > >

> > > > Caitlin

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

- I had the same thought and did that. I checked this morning

and they were better. Moderate, but heading in the right direction.

She was calm last night, sleeping until 6. She woke up and was very

vocal, but not crying. I fed her a litte early, and that seemed to

help. She is fairly calm now, relatively, at least.

During all this she has been on a taper from her stress dose of cortef

and the doctors say that the steroids can make one irritable. Maybe

that's it on this end, but she was irritable before all this started.

That's why I took her to see the Dr. in the first place.

Her neuro is very responsive and called yesterday to see what happened

after her Dr. visit. That made me feel much better, reeminding me I " m

not in this alone. We tried to get a blood sample from her yesterday,

but she had been stuck too many times and we couldn't do it. I didn't

have the heart to keep trying, so unless she's worse today, maybe I

can skip it.

Thanks for your help and positive thoughts.

Caitlin