Update on my daughter

[Guest guest]

Hi ,

My daughter is 9 and has poly as well. Haley was diagnosed when she was 3. Haley was in remission ONCE for about 6 months! I read your post and I know exactly how you feel. Haley is not a whiner, so it is tough to have people understand. Have you thought of asking your doctor about Enbrel? A lot of people have had great success with it. What I like about it A LOT it that is does not effect the internal organs of your daughters body. It is a biological protein. It totally targets the joints ONLY! I think doctors don't want to go that direction right away is because they need to follow some protocol from the insurance companies. It is expensive. Our insurance pays all but $30.00. We had to try Methotrexate, then Arava, then Mtx & Arava combo..... Finally we were put on Enbrel. We had an appt. last week and the doc said she has never looked better. Her joints in her fingers are still very large. We took an x-ray to see if it is bone growth. I think it is! Anyway......... Check the Enbrel. It is a shot... but it really is not a big deal. We STILL use numbing cream.

Terrie & Haley (9 poly)

[Guest guest]

,

I was very worried about the Mtx on her organs. It really worried me that in effort to control the JRA, we were/are causing other problems. You can call Enbrel directly and talk to them. Enbrel HAS been approved for kids, I think as young as 4 years old. I would call them, they can send you all the literature about the drug. I really do think that insurance companies require doctors to try cheaper medications first..... regardless of our kids health! Just my opionion! I think it ironic that Mtx is the cheapest.... then Arava is about $250.00/mo. and Enbrel about $1,200.00/mo....... Funny how this works, huh!?

The drug company is Immunex Corporation

Seattle, Washington

I don't remember the 800 number..... It is something like 1-800-4ENBREL................. Actually, I do think this is it!

Terrie

[Guest guest]

In a message dated 9/29/2003 8:54:49 AM Central America Standard Tim, claudia_eugenin@... writes:

I think that what my rheumy meant is not being tested long enough???

Hi ,

If your really interested in having them put on Enbrel... I can't imagine they could dispute it if the drug manufacturer has had it approved. My daughter goes to Dr. Hollister at Children's Hospital in Denver. He has a fantastic reputation! When Haley was first diagnosed I called everywhere to get other opionions..... Every doctor, once they heard who she was seeing all said the same thing.... That he is very good and they don't think what they would do for her would be any different.

How old did you say your daughter is? I wonder if she would be interested in being pen-pals with Haley. Haley loves to write letters. I think it would be fun for them to have a pen-pal with the same issues in life.

Terrie

[Guest guest]

-

So sorry to hear your daughter's symptoms have returned. I know what you mean about it being almost harder when they return after a long period of "normal." Even though you intellectually know it might happen, even probably will, part of you feels like maybe this is it . . . it's gone. Such a let down when it's not. But you've been through it all before and you know you can handle it and will handle it well. And at least you know that symptom-free is achievable and you can look forward to getting there again :-) Hugs! While you friends and family might not quite get it, we do. That's what we're here for.

Diane (, 4, pauci)

[Guest guest]

Hi Terrie,

Thanks for your reply. I am happy to hear that Haley's appointment went so well.

I have often thought about Enbrel, and have mentioned it once to my rheumy but she said something about not being tested long enough on children. I think that it's about protocol, but I plan to insist about it on next November visit. About the pricing, that could be an issue too, because this is Canada, and you may know that the health system covers everything, so it's on their budget. I do have a private insurance as well, so I can suggest trying to take care of it on my own.

The idea of the biological protein that does not affect the internal organs sounds good to me, and I have this feeling that MTX is not doing it for her any longer.

Thanks for the help.

Stay pain free,

(9) poly

Re: Update on my daughter

Hi ,

My daughter is 9 and has poly as well. Haley was diagnosed when she was 3. Haley was in remission ONCE for about 6 months! I read your post and I know exactly how you feel. Haley is not a whiner, so it is tough to have people understand. Have you thought of asking your doctor about Enbrel? A lot of people have had great success with it. What I like about it A LOT it that is does not effect the internal organs of your daughters body. It is a biological protein. It totally targets the joints ONLY! I think doctors don't want to go that direction right away is because they need to follow some protocol from the insurance companies. It is expensive. Our insurance pays all but $30.00. We had to try Methotrexate, then Arava, then Mtx & Arava combo..... Finally we were put on Enbrel. We had an appt. last week and the doc said she has never looked better. Her joints in her fingers are still very large. We took an x-ray to see if it is bone growth. I think it is! Anyway......... Check the Enbrel. It is a shot... but it really is not a big deal. We STILL use numbing cream.

Terrie & Haley (9 poly) To leave this mailing list, send request to: -unsubscribe

[Guest guest]

Terrie,

Thanks, I'll call them right away

CLAUDIA

Re: Update on my daughter

,

I was very worried about the Mtx on her organs. It really worried me that in effort to control the JRA, we were/are causing other problems. You can call Enbrel directly and talk to them. Enbrel HAS been approved for kids, I think as young as 4 years old. I would call them, they can send you all the literature about the drug. I really do think that insurance companies require doctors to try cheaper medications first..... regardless of our kids health! Just my opionion! I think it ironic that Mtx is the cheapest.... then Arava is about $250.00/mo. and Enbrel about $1,200.00/mo....... Funny how this works, huh!?

The drug company is Immunex Corporation

Seattle, Washington

I don't remember the 800 number..... It is something like 1-800-4ENBREL................. Actually, I do think this is it!

TerrieTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Terrie,

Thanks, I'll call them right away, so that I gather all the information before the next check up.

What you're saying

CLAUDIA

Re: Update on my daughter

,

I was very worried about the Mtx on her organs. It really worried me that in effort to control the JRA, we were/are causing other problems. You can call Enbrel directly and talk to them. Enbrel HAS been approved for kids, I think as young as 4 years old. I would call them, they can send you all the literature about the drug. I really do think that insurance companies require doctors to try cheaper medications first..... regardless of our kids health! Just my opionion! I think it ironic that Mtx is the cheapest.... then Arava is about $250.00/mo. and Enbrel about $1,200.00/mo....... Funny how this works, huh!?

The drug company is Immunex Corporation

Seattle, Washington

I don't remember the 800 number..... It is something like 1-800-4ENBREL................. Actually, I do think this is it!

TerrieTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Terrie,

Thanks for the information, I'll call them right away. This way

CLAUDIA

Re: Update on my daughter

,

I was very worried about the Mtx on her organs. It really worried me that in effort to control the JRA, we were/are causing other problems. You can call Enbrel directly and talk to them. Enbrel HAS been approved for kids, I think as young as 4 years old. I would call them, they can send you all the literature about the drug. I really do think that insurance companies require doctors to try cheaper medications first..... regardless of our kids health! Just my opionion! I think it ironic that Mtx is the cheapest.... then Arava is about $250.00/mo. and Enbrel about $1,200.00/mo....... Funny how this works, huh!?

The drug company is Immunex Corporation

Seattle, Washington

I don't remember the 800 number..... It is something like 1-800-4ENBREL................. Actually, I do think this is it!

TerrieTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

Terrie,

There's something weird about my email today, so if I over posted, sorry.

I'll call them right away, so that I can gather the information before the next check-up.

The pricing might be an interesting issue. About being kid approval, I think that what my rheumy meant is not being tested long enough???

Thanks again,

(9) poly

Re: Update on my daughter

,

I was very worried about the Mtx on her organs. It really worried me that in effort to control the JRA, we were/are causing other problems. You can call Enbrel directly and talk to them. Enbrel HAS been approved for kids, I think as young as 4 years old. I would call them, they can send you all the literature about the drug. I really do think that insurance companies require doctors to try cheaper medications first..... regardless of our kids health! Just my opionion! I think it ironic that Mtx is the cheapest.... then Arava is about $250.00/mo. and Enbrel about $1,200.00/mo....... Funny how this works, huh!?

The drug company is Immunex Corporation

Seattle, Washington

I don't remember the 800 number..... It is something like 1-800-4ENBREL................. Actually, I do think this is it!

TerrieTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

I sure hear what you are saying. With the school, I printed up some

of the articles that Georgina posts here as well as others on the internet -

there are some specifically addressing teachers of kids with JRA - and I

handed them to the teachers/staff and requested firmly that they read them.

I told them that if they were going deal with my child without causing

injury to her, that they had to have an understanding of what was going on

in her body, whether it shows or not, because I held them accountable for

her safety while she is in their care. This has seemed to work well for us,

might be worth a try?

My best to you and .

Sherry (Casey, 12, poly)

http://www.ittybittybirdiebites.com

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----- Original Message -----

From: " claudia_eugenin " <claudia_eugenin@...>

> Maybe many of you don't know or don't remember us, that's fine. I

> rarely post, but read every and each one of your posts, and keep

> track of the development of your young ones.

> My daughter was diagnosed with poly JRA when she was 7. She

> started promptly on MTX, Naprosyn and Folic Acid, and soon she was

> pain free and also recuperated full motion of by that time, very

> stiff and crooked fingers. So we hanged in there, for six or eight

> months, and were saying goodbye to all her old symptons. But you

> all know perfectly how it is, she started this summer, after a twist

> ankle, and soon after a sprained wrist, with her old symptoms back

> again. She had been at that point totally succesfully tapered from

> her Naprosyn so we were whispering (not talking really)

> about " remission " , but things came back. I have to share that it

> was almost more sad than the first time, and I really feel guilty

> telling this, because I know that many of you have it much more

> tough than we do, so please excuse me for this. The thing is that

> people who don't really suffer from this, really don't understand it.

> Since her symptoms came back, I had to talk with her school again,

> to ask them for some support in the typicall gym, heavy backpacks,

> excesive stairs climbing, that sort of things. Even though most of

> them are very supportive and understanding, I still have a hard time

> with teachers and specific persons that just don't get it. They

> think that because she is not complaining and crying out of pain,

> there's nothing wrong with her, and she should try harder. Of

> course they know nothing about joint inflammation and joint pain, so

> sometimes there's like no purpose in explaining how does this

> disease works. Even I have a hard time making some close relatives

> who don't see her often, understand, that even though, they

> sometimes see her jumping and running like a 9 year old should, that

> doesn't mean that the inflamation, pain and active disease are not

> there.

> She's back on Naprosyn now, but planned to be tapered soon, but her

> MTX dosis was raised from 10 mg. to 12.5, after an approximate year

> and a half on it, just when I thought we would be tapering it, but

> it seems that it's not going to happen for now.

> Sorry for all the rambling, but sometimes is hard to share about our

> feelings with our friends and close ones, because even if they try

> hard, it's difficult to really understand if you're not living with

> it.

[Guest guest]

Just a quick addition to this - the pricing has to do with the length of time the drug has been available. The older the drug the cheaper. This is because drug companies try to recoop their expenses as fast as they can when the introduce a new drug. Before any patent they may have runs out and a generic drug can be sold. Thus the expense of the newer drugs. MTX has been around for a long time as a chemotherapy drug. Just thought I'd pass that info along, Michele (16,pauci & spondy)

-----Original Message-----From: tsmodsquad@... [mailto:tsmodsquad@...] Sent: Monday, September 29, 2003 9:43 AM Subject: Re: Update on my daughter

,

I was very worried about the Mtx on her organs. It really worried me that in effort to control the JRA, we were/are causing other problems. You can call Enbrel directly and talk to them. Enbrel HAS been approved for kids, I think as young as 4 years old. I would call them, they can send you all the literature about the drug. I really do think that insurance companies require doctors to try cheaper medications first..... regardless of our kids health! Just my opionion! I think it ironic that Mtx is the cheapest.... then Arava is about $250.00/mo. and Enbrel about $1,200.00/mo....... Funny how this works, huh!?

The drug company is Immunex Corporation

Seattle, Washington

I don't remember the 800 number..... It is something like 1-800-4ENBREL................. Actually, I do think this is it!

TerrieTo leave this mailing list, send request to: -unsubscribe

[Guest guest]

,

I will write you a private e-mail and we can exchange addresses.

Terrie

[Guest guest]

You are so right . People who don't live with it don't

understand, nor do some get the fact that kids get arthritis. To look at

my son, you couldn't tell, but when he recently got sick, some people

were like it was no big deal. It was a simple cold and ear infection,

but he missed 3 days of school because he was so exhausted. And his

asthma flared, which made it all worse. But people think because he

looks tall and healthy that he should be ok. It drives me crazy! I had a

friend who's son had dehydrated recently and needed to be hospitalized

over night. had a drs appt that day by chance at the same

hospital. So I was going to see my friend, but her son was released. So

I just mentioned the next time we spoke that we were there, and all. She

said, I hope is alright. Like it was something unusual for us to

be at the hospital. I said we are there every month - nothing unusual

for us. What got me was this is a woman I have been friends with since

grade school - she certainly knows all about my son's health, and yet

she doesn't even realize what we go through with this disease. My sister

is the same. I guess my point is, we here all understand each other

because we live with it and the people around us - even those we love

dearly- won't always understand. That is why this list is such a great

thing! Michele ( 16, pauci & spondy)

Update on my daughter

Hi everyone!

Maybe many of you don't know or don't remember us, that's fine. I

rarely post, but read every and each one of your posts, and keep

track of the development of your young ones.

My daughter was diagnosed with poly JRA when she was 7. She

started promptly on MTX, Naprosyn and Folic Acid, and soon she was

pain free and also recuperated full motion of by that time, very

stiff and crooked fingers. So we hanged in there, for six or eight

months, and were saying goodbye to all her old symptons. But you

all know perfectly how it is, she started this summer, after a twist

ankle, and soon after a sprained wrist, with her old symptoms back

again. She had been at that point totally succesfully tapered from

her Naprosyn so we were whispering (not talking really)

about " remission " , but things came back. I have to share that it

was almost more sad than the first time, and I really feel guilty

telling this, because I know that many of you have it much more

tough than we do, so please excuse me for this. The thing is that

people who don't really suffer from this, really don't understand it.

Since her symptoms came back, I had to talk with her school again,

to ask them for some support in the typicall gym, heavy backpacks,

excesive stairs climbing, that sort of things. Even though most of

them are very supportive and understanding, I still have a hard time

with teachers and specific persons that just don't get it. They

think that because she is not complaining and crying out of pain,

there's nothing wrong with her, and she should try harder. Of

course they know nothing about joint inflammation and joint pain, so

sometimes there's like no purpose in explaining how does this

disease works. Even I have a hard time making some close relatives

who don't see her often, understand, that even though, they

sometimes see her jumping and running like a 9 year old should, that

doesn't mean that the inflamation, pain and active disease are not

there.

She's back on Naprosyn now, but planned to be tapered soon, but her

MTX dosis was raised from 10 mg. to 12.5, after an approximate year

and a half on it, just when I thought we would be tapering it, but

it seems that it's not going to happen for now.

Sorry for all the rambling, but sometimes is hard to share about our

feelings with our friends and close ones, because even if they try

hard, it's difficult to really understand if you're not living with

it.

Thanks for reading,

(9) Poly

To leave this mailing list, send request to:

-unsubscribe

[Guest guest]

Hi Terrie,

I contacted the Enbrel number, but unfortunatelly they told me it

hasn't been yet approved for children in Quebec, (which is where we

live), but only in Ontario and Nova Scotia . They say it always

takes longer here, but they expect it to be released very soon.

Anyway, they are mailing me information, so I can be prepared before

our next November appointment.

I'm glad that you see a rheumy that you really trust. I think we've

been very lucky too, sees an excellent rheumy team at the

Montreal's Children Hospital. They are always very helpful and

concerned about any piece of information that I might give them, I

feel blessed for having them.

just turned 9 and was diagnosed at 7 shortly after the first

symptoms appeared.

She certainly would enjoy having Haley as a pen-pal, I think it's a

great idea! She doesn't really share much about her arthritis

because she senses that normally people don't understand much what

she's talking about.

Thanks again,

(9) poly

[Guest guest]

Hi Michele,

Interesting on learning about the pricing issue, I really didn't

understand how could there be such a gigantic difference, but I did

figure that maybe with Enbrel being around not very long it could

have something to do with it.

(9) poly

[Guest guest]

Hi Diane,

Thanks for your support. I totally understand what you're saying!

So good to have such good listeners, and the kind who have been

there.

God bless you all,

(9) poly

[Guest guest]

Hi Michele,

I thought it was just me who had the feeling that 's JRA was

treated as it wasn't a big deal. It seems that if people don't see

her walking on four because of the pain, it's just not there!

They don't understand about the exhaustion either.

Even my parents who recently visited (hadn't in almost two years),

couldn't understand why I didn't " make her " take her backpack to the

second floor (long stair) right away, after coming from school. My

dad said that he thought she should be treated normally and if he

had seen her running and laughing minutes before, she might as well

be good enough to carry heavy backpacks up the stairs.

I don't have to tell you how many times I have explained before

about her inflamated ankles and knees and the pain, but what do we

know, right?

Just to agree with you that even our closest relatives and friends

don't really " get it " , unless they have been there. This is one

difficult issue to deal with.

So great to find nice people to share it with!

(9) poly

[Guest guest]

Hi Terrie,

I am so happy to hear that your daughter, Haley, continues to do so

well. If I'm remembering right, Haley is the girl who took her very

first injection on her birthday? If so, what a wonderful 'gift' it

turned out to be!

I hope whatever is going on in her fingers will be able to be addressed.

Is it erosions from when her arthritis was more active? Have they talked

about any possible solutions? Earlier on, used to have a lot of

finger involvement. His joints and knuckles were often very swollen and

painful. He couldn't make a fist and had trouble holding things,

writing, etc. When he was younger they looked mis-shapen and I worried

that it might be permanent but, over time, instead of getting worse it

actually got better. I attribute the improvement to methotrexate ... and

only wish that it had been an option available for one of my elderly

neighbors with RA who, eventually, lost most function in both her hands.

I am so grateful for all the continued research and better understanding

of how rheumatic diseases work and what we can do to effectively treat

them. The future looks brighter and more hopeful than ever, for kids who

have arthritis.

Take Care,

Georgina

tsmodsquad@... wrote:

> Hi ,

>

> My daughter is 9 and has poly as well. Haley was diagnosed when she was

> 3. Haley was in remission ONCE for about 6 months! I read your post

> and I know exactly how you feel. Haley is not a whiner, so it is tough

> to have people understand. Have you thought of asking your doctor about

> Enbrel? A lot of people have had great success with it. What I like

> about it A LOT it that is does not effect the internal organs of your

> daughters body. It is a biological protein. It totally targets the

> joints ONLY! I think doctors don't want to go that direction right away

> is because they need to follow some protocol from the insurance

> companies. It is expensive. Our insurance pays all but $30.00. We had

> to try Methotrexate, then Arava, then Mtx & Arava combo..... Finally we

> were put on Enbrel. We had an appt. last week and the doc said she has

> never looked better. Her joints in her fingers are still very

> large. We took an x-ray to see if it is bone growth. I think it is!

> Anyway......... Check the Enbrel. It is a shot... but it really is

> not a big deal. We STILL use numbing cream.

>

> Terrie & Haley (9 poly)

[Guest guest]

Hi ,

I know exactly what you mean about the sadness you can feel when your

child, who appeared to be doing so well for a time, suddenly has a

return of the symptoms you'd wished were gone for good. There's a

possibility, though, that just taking the Methotrexate was enough to be

able to keep the disease quiet. Maybe she's had some growth since the

last time and the dose was just no longer high enough to be effective?

When Josh saw his doctors last week the only thing we changed was to

increase his dose of Indomethacin, his NSAID.

Since age 6, when he first had signs of arthritis, he's been taking the

same amount: 25mg twice a day. Fortunately, he has grown some since

then. After doing the calculations, the doctor thought we should try

increasing the dose to 25mg in the morning and 50mgs at night. To see if

maybe that takes care of the inflammation that's been popping up again

and leading to a return of the morning stiffness and some joint pain.

I'm keeping my fingers crossed ... and you and your daughter will be in

our thoughts. Hoping that it works for both of them.

Take Care,

Georgina

claudia_eugenin wrote:

> Hi everyone!

> Maybe many of you don't know or don't remember us, that's fine. I

> rarely post, but read every and each one of your posts, and keep

> track of the development of your young ones.

> My daughter was diagnosed with poly JRA when she was 7. She

> started promptly on MTX, Naprosyn and Folic Acid, and soon she was

> pain free and also recuperated full motion of by that time, very

> stiff and crooked fingers. So we hanged in there, for six or eight

> months, and were saying goodbye to all her old symptons. But you

> all know perfectly how it is, she started this summer, after a twist

> ankle, and soon after a sprained wrist, with her old symptoms back

> again. She had been at that point totally succesfully tapered from

> her Naprosyn so we were whispering (not talking really)

> about " remission " , but things came back. I have to share that it

> was almost more sad than the first time, and I really feel guilty

> telling this, because I know that many of you have it much more

> tough than we do, so please excuse me for this. The thing is that

> people who don't really suffer from this, really don't understand it.

> Since her symptoms came back, I had to talk with her school again,

> to ask them for some support in the typicall gym, heavy backpacks,

> excesive stairs climbing, that sort of things. Even though most of

> them are very supportive and understanding, I still have a hard time

> with teachers and specific persons that just don't get it. They

> think that because she is not complaining and crying out of pain,

> there's nothing wrong with her, and she should try harder. Of

> course they know nothing about joint inflammation and joint pain, so

> sometimes there's like no purpose in explaining how does this

> disease works. Even I have a hard time making some close relatives

> who don't see her often, understand, that even though, they

> sometimes see her jumping and running like a 9 year old should, that

> doesn't mean that the inflamation, pain and active disease are not

> there.

> She's back on Naprosyn now, but planned to be tapered soon, but her

> MTX dosis was raised from 10 mg. to 12.5, after an approximate year

> and a half on it, just when I thought we would be tapering it, but

> it seems that it's not going to happen for now.

> Sorry for all the rambling, but sometimes is hard to share about our

> feelings with our friends and close ones, because even if they try

> hard, it's difficult to really understand if you're not living with

> it.

> Thanks for reading,

>

>

> (9) Poly

[Guest guest]

Hi Terrie,

It's so nice to read such an uplifting update! I hope everything

continues to go smoothly and that your daughter's fingers will start

showing some improvement.

Take Care,

Georgina

tsmodsquad@... wrote:

> Hi ,

>

> My daughter is 9 and has poly as well. Haley was diagnosed when she was

> 3. Haley was in remission ONCE for about 6 months! I read your post

> and I know exactly how you feel. Haley is not a whiner, so it is tough

> to have people understand. Have you thought of asking your doctor about

> Enbrel? A lot of people have had great success with it. What I like

> about it A LOT it that is does not effect the internal organs of your

> daughters body. It is a biological protein. It totally targets the

> joints ONLY! I think doctors don't want to go that direction right away

> is because they need to follow some protocol from the insurance

> companies. It is expensive. Our insurance pays all but $30.00. We had

> to try Methotrexate, then Arava, then Mtx & Arava combo..... Finally we

> were put on Enbrel. We had an appt. last week and the doc said she has

> never looked better. Her joints in her fingers are still very

> large. We took an x-ray to see if it is bone growth. I think it is!

> Anyway......... Check the Enbrel. It is a shot... but it really is

> not a big deal. We STILL use numbing cream.

>

> Terrie & Haley (9 poly)

[Guest guest]

BARB,WHAT IS YOUR DAUGHTER'S NAME AND I'LL PUT HER ON THE PRAYER LIST WITH ALL

THE OTHERS I PRAY FOR,PLUS I'LL PUT HER ON THE PRAYER LIST AT MY CHURCH LIKE

SOME OF THE OTHERS. MICHELLE GRACE'S DAUGHTER,SEDONA GINA'S DAUGHTER,KYLE DEE'S

SON,ASHLEY TRACY'S DAUGHTER JUST TO NAME A FEW. HAVE A BLESED DAY,MARK

Barb Hunte <bhunte@...> wrote:Hello All,

Sorry it's been so long since I wrote, I feel like I'm chasing my tail trying to

find the source of her problem. Here's a summary of what I've done and what's

happening. (Just as a refresher, my 4.5 year old daughter started having Right

Temporal Lobe seizures for the first time in Mar 2003. They start partial, and

can move to general)

--At the end of August broke through her trileptal with multiple hourly seizures

--Sept- started Topamax. We have not yet gained enough stability on Topamax to

completely remove the trileptal, she's still on 1/3 of that dose. Removing even

1/2 tablet causes too much instability. We need to increase and decrease very

slowly, she shows a lot of side effects.

--Sept- started a failsafe diet www.fedupwithfoodadditives.info and cut out

salicylates, amines and glutamates. This left her with only pears and a handful

of veggies in her diet, we were already gluten and casein free. Failsafe's

recommendation is to do a strick elimination diet for 6 weeks, then once symtoms

subside introduce foods one at a time to see if there is any reaction. All of

her stomach pains and problem stools disappeared, but because her seizures still

have not subsided, we are still on a strick elimination diet. (It also meant

eliminating any supplements with natural flavor or colours, herbs, and freeze

dried fruits and veggies). This can't be healthy for her.

--Oct- eliminated another level of amines--had to find meat that had 36 hrs or

less from butchering to freezing, steroid free, range fed, and antibiotic free.

I saw significant behavioral improvements, even while increaseing Topamax.

--Nov- had some extremely rocky days because of trileptal decreases

--Nov- had a 'Urine Organic Acid Analysis' completed by Mark Schauss at Carbon

Based Corp. EXTREMELY helpful. I noticed immediate improvements in her

'latent' seizure activity and her energy levels. Unfortuneately with her, if we

don't have 100% alleviation of seizure activity, her seizures increase in

frequency and duration. I'm still working with Mark and his recommendations,

hopefully we'll crack her case soon. The reports are extremely detailed, it's

great having a picture of what's happening in her body.

--Dec- she caught a wicked flu, 15 days of fever, ambulance ride and new seizure

types showing up. Unfortuneately most of you know the hell of that.

--Dec- my mother happened to socially meet the dietician who assists patients

with the ketogenic diet out of the hospital of my daughter's neurologist. I did

not even know she existed, even though I had informed my neurologist that if

Topamax failed I wanted to try keto, not another drug.

--Dec- saw a disturbing pattern of less and less clear time between drug

increases. She started night wetting, 1-3 times a night. We've never observed

any night time seizure activity, but once she starts wetting, she usually starts

having daytime seizure activity that increases in intensity and duration.

--Dec. 31- terrible seizure breakthroughs, just one week after an increase

--Jan 1- began Atkins ketosis-- 10 Carbs, and increased fats. Problem: the

only failsafe oil is canola. Thanks for the posting on canola, I never did use

it. So the only thing left was butter, even though she's casein free, I thought

that would be better than canola. We were not getting the seizure control we

wanted, so I've increased the fat. We had to go down to 7 Carbs (that's about

1/4 cup red cabbage, and 3/4 cup iceberg lettuce) a day, 80-100g of fat per day,

as much meat and eggs and she wants (which she is totally sick of). Oh ya, we

are also sugar and sweetner free. Needless to say between all of those

restrictions all she is eating is: butter, chicken, bison, red cabbage, celery,

some green beans, ice berg lettuce. The poor thing! She's actually crying for

more veggies. Needless to say after about 2 weeks, her cholesteral levels were

double what they should be, she was deathly pale, and starting to react with

congestion from the butter. We were doing well with

seizure control so I switched her to coconut, olive, and pumkin seed oils, and

added a veggie and fruit supplement that contains no carbs. Her colour is

better, but for the last week she is again wetting every night, after 6 dry

weeks (2 days after ketosis began, she's been dry). This could be a salicylate

reaction from the oil, or seizure breakthroughs beginnig, but her days seem

clear so far

--Another EXTREMELY disturbing pattern is urinary tube discomfort. She's never

had an infection, like the bed wetting her discomfort seems to show up as

seizure control is unraveling. Her urate levels are elivated, which contributes

to the forming of painful crystals and kidney stones. For the last 5 days she's

had varying degrees of discomfort (from aggitation to wreathing in pain) but

never complete relief. Interestingly enough, her day time seizure activity has

been nonexistant, but her urinary pain has increased. (Her pain increases as her

bladder fills, after urination, pain again becomes tolerable. Although times

between don't seem to have a pattern). This is the first time in this journey

there has not been a direct correlation between the two, I always thought the

pain had something to do with her seizures, but now I see the pain is not caused

by them. This also tells me that ketosis is doing something positive for the

seizures. I dug deep into my memory, and before

her March seizure (which started this whole roller coaster ride) she had

similar discomfort. CONCLUSION?!?-There is something happening in her body that

is causing the urinary pain (acidosis?) AND the seizures. (Thanks for the

posting about the bicarb inbalance on the Topamax and the possible icrease of

acidity of added ketosis). I'm not sure Medicine is going to be able to help,

because all of her blood work shows normal levels of all her minerals, but

something HAS to be going on with her absorbtion otherwise she would not have

had urinary discomfort without and infection.

--Where to go from here? I'm working with Mark and his ideas, but if something

is wrong with her absorbion ability I don't even know if supplements will help.

Ketosis is working for seizure control, but I don't know how much more her poor

little body can take of this urinary pain--we can't let her get kidney stones or

gout from the crystals. Topamax may be the wrong drug for her if it can effect

bicarb balances and her's was already wacky. But I sooooooo hate switching

drugs! Again, because her blood work is normal, I'm not sure medicine will have

much to offer. I just sent an email to the neurologist on Fri, so I'll know

their opinion soon.

Could the salicylates be causing the bedwetting this time? If so, why can't her

body handle them either. Fruits and veggies are so crucial, she can't live her

life without them.

Thanks all for your time. Our poor dear children and all they have to go

through. I'm sorry too for anyone reading this because it means you somehow can

relate to this journey and I wouldn't wish it on anyone.

If anyone has any ideas I would love to hear them. Has anyone else had this

same type of urinary tract pain, please enlighten.

Barb

***Attention ***

New email address Please update your address book

My new email is bhunte@...

[Guest guest]

Hi Barb,

What a story.....the ups and downs our children have are amazing. Two

things that jumped out at me were the Keto diet causing kidney stones in

some kids (which happened to a friend of mine son and he had to come off the

diet) and if I remember right, stones are a possible side effect on Topamax

too. It may have been another drug, but I'm thinking it was Topamax. My

son has had night time wetting while on Topamax too, only a few times per

month usually, but that is the only drug he's been on and had wetting

issues. We are one dose away from being off Topamax completely.....yeah!!

Your right, it is hell coming off any med.

Keep up the battle, hopefully things will click for her.

Jill F.

Mom to , age 11

[ ] Update on my daughter

Hello All,

Sorry it's been so long since I wrote, I feel like I'm chasing my tail

trying to find the source of her problem. Here's a summary of what I've

done and what's happening. (Just as a refresher, my 4.5 year old daughter

started having Right Temporal Lobe seizures for the first time in Mar 2003.

They start partial, and can move to general)

--At the end of August broke through her trileptal with multiple hourly

seizures

--Sept- started Topamax. We have not yet gained enough stability on Topamax

to completely remove the trileptal, she's still on 1/3 of that dose.

Removing even 1/2 tablet causes too much instability. We need to increase

and decrease very slowly, she shows a lot of side effects.

--Sept- started a failsafe diet www.fedupwithfoodadditives.info and cut out

salicylates, amines and glutamates. This left her with only pears and a

handful of veggies in her diet, we were already gluten and casein free.

Failsafe's recommendation is to do a strick elimination diet for 6 weeks,

then once symtoms subside introduce foods one at a time to see if there is

any reaction. All of her stomach pains and problem stools disappeared, but

because her seizures still have not subsided, we are still on a strick

elimination diet. (It also meant eliminating any supplements with natural

flavor or colours, herbs, and freeze dried fruits and veggies). This can't

be healthy for her.

--Oct- eliminated another level of amines--had to find meat that had 36 hrs

or less from butchering to freezing, steroid free, range fed, and antibiotic

free. I saw significant behavioral improvements, even while increaseing

Topamax.

--Nov- had some extremely rocky days because of trileptal decreases

--Nov- had a 'Urine Organic Acid Analysis' completed by Mark Schauss at

Carbon Based Corp. EXTREMELY helpful. I noticed immediate improvements in

her 'latent' seizure activity and her energy levels. Unfortuneately with

her, if we don't have 100% alleviation of seizure activity, her seizures

increase in frequency and duration. I'm still working with Mark and his

recommendations, hopefully we'll crack her case soon. The reports are

extremely detailed, it's great having a picture of what's happening in her

body.

--Dec- she caught a wicked flu, 15 days of fever, ambulance ride and new

seizure types showing up. Unfortuneately most of you know the hell of that.

--Dec- my mother happened to socially meet the dietician who assists

patients with the ketogenic diet out of the hospital of my daughter's

neurologist. I did not even know she existed, even though I had informed my

neurologist that if Topamax failed I wanted to try keto, not another drug.

--Dec- saw a disturbing pattern of less and less clear time between drug

increases. She started night wetting, 1-3 times a night. We've never

observed any night time seizure activity, but once she starts wetting, she

usually starts having daytime seizure activity that increases in intensity

and duration. --Dec. 31- terrible seizure breakthroughs, just one week after

an increase --Jan 1- began Atkins ketosis-- 10 Carbs, and increased fats.

Problem: the only failsafe oil is canola. Thanks for the posting on

canola, I never did use it. So the only thing left was butter, even though

she's casein free, I thought that would be better than canola. We were not

getting the seizure control we wanted, so I've increased the fat. We had to

go down to 7 Carbs (that's about 1/4 cup red cabbage, and 3/4 cup iceberg

lettuce) a day, 80-100g of fat per day, as much meat and eggs and she wants

(which she is totally sick of). Oh ya, we are also sugar and sweetner free.

Needless to say between all of those restrictions all she is eating is:

butter, chicken, bison, red cabbage, celery, some green beans, ice berg

lettuce. The poor thing! She's actually crying for more veggies. Needless

to say after about 2 weeks, her cholesteral levels were double what they

should be, she was deathly pale, and starting to react with congestion from

the butter. We were doing w! ell with seizure control so I switched her to

coconut, olive, and pumkin seed oils, and added a veggie and fruit

supplement that contains no carbs. Her colour is better, but for the last

week she is again wetting every night, after 6 dry weeks (2 days after

ketosis began, she's been dry). This could be a salicylate reaction from

the oil, or seizure breakthroughs beginnig, but her days seem clear so far

--Another EXTREMELY disturbing pattern is urinary tube discomfort. She's

never had an infection, like the bed wetting her discomfort seems to show up

as seizure control is unraveling. Her urate levels are elivated, which

contributes to the forming of painful crystals and kidney stones. For the

last 5 days she's had varying degrees of discomfort (from aggitation to

wreathing in pain) but never complete relief. Interestingly enough, her day

time seizure activity has been nonexistant, but her urinary pain has

increased. (Her pain increases as her bladder fills, after urination, pain

again becomes tolerable. Although times between don't seem to have a

pattern). This is the first time in this journey there has not been a

direct correlation between the two, I always thought the pain had something

to do with her seizures, but now I see the pain is not caused by them. This

also tells me that ketosis is doing something positive for the seizures. I

dug deep into my memory, and!

before her March seizure (which started this whole roller coaster ride)

she had similar discomfort. CONCLUSION?!?-There is something happening in

her body that is causing the urinary pain (acidosis?) AND the seizures.

(Thanks for the posting about the bicarb inbalance on the Topamax and the

possible icrease of acidity of added ketosis). I'm not sure Medicine is

going to be able to help, because all of her blood work shows normal levels

of all her minerals, but something HAS to be going on with her absorbtion

otherwise she would not have had urinary discomfort without and infection.

--Where to go from here? I'm working with Mark and his ideas, but if

something is wrong with her absorbion ability I don't even know if

supplements will help. Ketosis is working for seizure control, but I don't

know how much more her poor little body can take of this urinary pain--we

can't let her get kidney stones or gout from the crystals. Topamax may be

the wrong drug for her if it can effect bicarb balances and her's was

already wacky. But I sooooooo hate switching drugs! Again, because her

blood work is normal, I'm not sure medicine will have much to offer. I just

sent an email to the neurologist on Fri, so I'll know their opinion soon.

Could the salicylates be causing the bedwetting this time? If so, why can't

her body handle them either. Fruits and veggies are so crucial, she can't

live her life without them.

Thanks all for your time. Our poor dear children and all they have to go

through. I'm sorry too for anyone reading this because it means you somehow

can relate to this journey and I wouldn't wish it on anyone.

If anyone has any ideas I would love to hear them. Has anyone else had this

same type of urinary tract pain, please enlighten.

Barb

***Attention ***

New email address Please update your address book

My new email is bhunte@...

[Guest guest]

Barb,

You are doing an amazing job with your daughter. The only idea I can

contribute is to use clarified butter or buy the product " Ghee " . This

way she can continue to use butter but still be casien-free. Dairy

can affect the urinary tract.

Best luck,

[Guest guest]

Barb,

All this since March 2003? That's amazing! I just wanted to say that I

am so sorry that your baby is having to go through all this I hope and

pray that you will both find some relief real soon. I will keep you both

in my prayers! God Bless!

Grace

On Sun, 15 Feb 2004 23:43:03 -0700 Barb Hunte <bhunte@...> writes:

> Hello All,

>

> Sorry it's been so long since I wrote, I feel like I'm chasing my

> tail trying to find the source of her problem. Here's a summary of

> what I've done and what's happening. (Just as a refresher, my 4.5

> year old daughter started having Right Temporal Lobe seizures for

> the first time in Mar 2003. They start partial, and can move to

> general)

>

> --At the end of August broke through her trileptal with multiple

> hourly seizures

> --Sept- started Topamax. We have not yet gained enough stability on

> Topamax to completely remove the trileptal, she's still on 1/3 of

> that dose. Removing even 1/2 tablet causes too much instability.

> We need to increase and decrease very slowly, she shows a lot of

> side effects.

> --Sept- started a failsafe diet www.fedupwithfoodadditives.info and

> cut out salicylates, amines and glutamates. This left her with only

> pears and a handful of veggies in her diet, we were already gluten

> and casein free. Failsafe's recommendation is to do a strick

> elimination diet for 6 weeks, then once symtoms subside introduce

> foods one at a time to see if there is any reaction. All of her

> stomach pains and problem stools disappeared, but because her

> seizures still have not subsided, we are still on a strick

> elimination diet. (It also meant eliminating any supplements with

> natural flavor or colours, herbs, and freeze dried fruits and

> veggies). This can't be healthy for her.

> --Oct- eliminated another level of amines--had to find meat that had

> 36 hrs or less from butchering to freezing, steroid free, range fed,

> and antibiotic free. I saw significant behavioral improvements,

> even while increaseing Topamax.

> --Nov- had some extremely rocky days because of trileptal decreases

> --Nov- had a 'Urine Organic Acid Analysis' completed by Mark Schauss

> at Carbon Based Corp. EXTREMELY helpful. I noticed immediate

> improvements in her 'latent' seizure activity and her energy levels.

> Unfortuneately with her, if we don't have 100% alleviation of

> seizure activity, her seizures increase in frequency and duration.

> I'm still working with Mark and his recommendations, hopefully we'll

> crack her case soon. The reports are extremely detailed, it's great

> having a picture of what's happening in her body.

> --Dec- she caught a wicked flu, 15 days of fever, ambulance ride and

> new seizure types showing up. Unfortuneately most of you know the

> hell of that.

> --Dec- my mother happened to socially meet the dietician who assists

> patients with the ketogenic diet out of the hospital of my

> daughter's neurologist. I did not even know she existed, even

> though I had informed my neurologist that if Topamax failed I wanted

> to try keto, not another drug.

> --Dec- saw a disturbing pattern of less and less clear time between

> drug increases. She started night wetting, 1-3 times a night.

> We've never observed any night time seizure activity, but once she

> starts wetting, she usually starts having daytime seizure activity

> that increases in intensity and duration.

> --Dec. 31- terrible seizure breakthroughs, just one week after an

> increase

> --Jan 1- began Atkins ketosis-- 10 Carbs, and increased fats.

> Problem: the only failsafe oil is canola. Thanks for the posting

> on canola, I never did use it. So the only thing left was butter,

> even though she's casein free, I thought that would be better than

> canola. We were not getting the seizure control we wanted, so I've

> increased the fat. We had to go down to 7 Carbs (that's about 1/4

> cup red cabbage, and 3/4 cup iceberg lettuce) a day, 80-100g of fat

> per day, as much meat and eggs and she wants (which she is totally

> sick of). Oh ya, we are also sugar and sweetner free. Needless to

> say between all of those restrictions all she is eating is: butter,

> chicken, bison, red cabbage, celery, some green beans, ice berg

> lettuce. The poor thing! She's actually crying for more veggies.

> Needless to say after about 2 weeks, her cholesteral levels were

> double what they should be, she was deathly pale, and starting to

> react with congestion from the butter. We were doing well with

> seizure control so I switched her to coconut, olive, and pumkin seed

> oils, and added a veggie and fruit supplement that contains no

> carbs. Her colour is better, but for the last week she is again

> wetting every night, after 6 dry weeks (2 days after ketosis began,

> she's been dry). This could be a salicylate reaction from the oil,

> or seizure breakthroughs beginnig, but her days seem clear so far

> --Another EXTREMELY disturbing pattern is urinary tube discomfort.

> She's never had an infection, like the bed wetting her discomfort

> seems to show up as seizure control is unraveling. Her urate levels

> are elivated, which contributes to the forming of painful crystals

> and kidney stones. For the last 5 days she's had varying degrees of

> discomfort (from aggitation to wreathing in pain) but never complete

> relief. Interestingly enough, her day time seizure activity has

> been nonexistant, but her urinary pain has increased. (Her pain

> increases as her bladder fills, after urination, pain again becomes

> tolerable. Although times between don't seem to have a pattern).

> This is the first time in this journey there has not been a direct

> correlation between the two, I always thought the pain had something

> to do with her seizures, but now I see the pain is not caused by

> them. This also tells me that ketosis is doing something positive

> for the seizures. I dug deep into my memory, and before her March

> seizure (which started this whole roller coaster ride) she had

> similar discomfort. CONCLUSION?!?-There is something happening in

> her body that is causing the urinary pain (acidosis?) AND the

> seizures. (Thanks for the posting about the bicarb inbalance on the

> Topamax and the possible icrease of acidity of added ketosis). I'm

> not sure Medicine is going to be able to help, because all of her

> blood work shows normal levels of all her minerals, but something

> HAS to be going on with her absorbtion otherwise she would not have

> had urinary discomfort without and infection.

> --Where to go from here? I'm working with Mark and his ideas, but

> if something is wrong with her absorbion ability I don't even know

> if supplements will help. Ketosis is working for seizure control,

> but I don't know how much more her poor little body can take of this

> urinary pain--we can't let her get kidney stones or gout from the

> crystals. Topamax may be the wrong drug for her if it can effect

> bicarb balances and her's was already wacky. But I sooooooo hate

> switching drugs! Again, because her blood work is normal, I'm not

> sure medicine will have much to offer. I just sent an email to the

> neurologist on Fri, so I'll know their opinion soon.

> Could the salicylates be causing the bedwetting this time? If so,

> why can't her body handle them either. Fruits and veggies are so

> crucial, she can't live her life without them.

>

>

> Thanks all for your time. Our poor dear children and all they have

> to go through. I'm sorry too for anyone reading this because it

> means you somehow can relate to this journey and I wouldn't wish it

> on anyone.

>

> If anyone has any ideas I would love to hear them. Has anyone else

> had this same type of urinary tract pain, please enlighten.

>

> Barb

>

>

>

> ***Attention ***

> New email address Please update your address book

> My new email is bhunte@...

>

> Non-text portions of this message have been removed]

>

>

>

>

[Guest guest]

Holly,

I know right now it seems overwhelming to deal with all of this. I will

tell you, it gets better. Dealing with all of this, the disease, the

doctors, the meds, the worry - it's all a process. It bad, then it's

horrible, then it's manageable, and somewhere along the way, it's just

becomes your life. For us, the single biggest obstacle we had to overcome

was grieving the loss of what we thought our life would be like, we never

planned our life this way. Somehow, this is what we all ended up with.

There will be times when you will be grateful for the joys this disease can

bring your family (like a 6 year old who is sensitive to others medical

needs because of his own), but you will never, and I mean, never be glad you

have this disease to deal with or that your child has this extra hurdle.

I know it's hard, and I know it's lonely, and it's isolating, and the worry

is constant, but it does get better. You are in a very early stage, and if

I have one piece of knowledge to offer, it's something I heard here, about

the testing process, but applies to the overall disease, and well, this

process - it's marathon, not a sprint. There will be many days like this,

many days of despair - I promise you, on those days, we will all be here.

You do not have to journey this alone. Sometimes, some of us will read your

words, and be so caught up in our own issues, all we will be able to offer

is a silent prayer, and other times, there will be an outpouring of outward

support - just know that regardless of which you receive, we are all here.

Most everyone here has been where you are. even if your daughter does not

end up PID - we can ALL relate to the worry, the tired feeling, and being

sick of her being sick, not being able to fix her yourself. We've all been

there.

I can remember a time when I thought our life was over as we went through

the diagnosis process. I can tell you now, that it was only getting ready

to begin - you see, once we had a diagnosis, a treatment, a plan, an answer

- everything was more manageable.

Don't forget in all this - take time for yourself. As caregivers, we

usually put ourselves last, but remember, you too must be rested and ready

to tackle the next issue.

We're here if you need it.

Dayna

Mom to Charlie 6 , Kate 4, Tommy 2

All PIDD

All on IVIG

www.igliving.com <http://www.igliving.com/> :

www.immunedisease.com <http://www.immunedisease.com/>

www.primaryimmune.org <http://www.primaryimmune.org/>

www.info4pi.org <http://www.info4pi.org/>

_____

From: [mailto: ] On Behalf Of

Holly

Sent: Wednesday, November 22, 2006 7:39 PM

Subject: Update on my daughter

I have only posted once or twice since I joined. I have a 4 year old that

will be getting blood work done soon to find out if she has an immune

deficiency.

The last week has been rough. Two weeks ago, I had to pick her up at

preschool because they thought she had pink eye. When I seen her, I knew it

was a sinus infection. I decided to take her to a new doctor as the doctor

she had been seeing was doing nothing to find the cause of the chronic sinus

infections.

The new doctor was great. He suggested blood work be done to test for an

immune deficiency as soon as she was feeling better.

So she went for a follow-up last Monday. The sinus infection was gone but

she had an ear infection. She also started coughing but the doctor didn't

hear anything.

By Thursday, she was back at the doctors with coughing that wouldn't stop.

He felt that it was her asthma acting up but had x-rays done. He also put

her on the Z-pac just incase it was pneumonia. She went for a follow-up on

Monday and it was confirmed pneumonia in the lower left lobe.

She went back again today and her chest is still congested. So she is back

on antibiotics. She is also getting breathing treatments every 4-6 hours.

She has another follow-up with the doctor on Tuesday.

Her doctor did consult with my daughters asthma doctor and they both agree

that she needs the work up done to find out of she does have an immune

deficiency. Since she was on steroids for 5 days, the lab work won't be done

until after Tuesday's follow-up visit.

I am so exhausted from all these doctor visits. I am upset that my daughter

is not getting better and I can't make her healthier. And I am beating

myself up because I had no idea she was so sick. If you were to look at her,

she doesn't act sick. I would have swore all this week that she was 100%

better. I never imagined that her asthma is acting up so much.

I just want my daughter to get healthy. I am sick of the doctors, the

antibiotics, the side effects of the medication and constant worry. How do

you all deal with it?