yesterdays visit to Jennell's Neph

August 6, 2005

Hi everyone

For all of you doing well, congradulations and for those of you not

doing well please know that my prayers are with all of you in good

times and bad. Keep the faith strong.

We had an appointment with Jennell's Neph yesterday.

At our last appointment he told us that he will be hosting a convention

in January with The Kidney Foundation of Mass, N.H., Vermont and R.I.

where he is one of the directors.

We spoke to him about her headaches, he said that could be from the

prednisone. We spoke to him about how in the past six weeks she has

been having problems with pain in her joints he said that is the HSP.

Thankfully she hasn't had any bad swelling, which is unusal and she

hasn't gained any more weight so that is good. We spoke about her

being so tired all the time he said that is part of kidney disease and

a side effect from the BP med. The color of her urine has been almost

normal so I am hoping that is good also. He is sending her for a bone

scan to get a base line to go by.

He told us that he had been receiving lots of data from all over

regarding kidney disease and the current research being done and would

be reading it to see if there has been any trials that have been at

least 70% successful and if he found one we would be trying it on

Jennell.

Well, sorry to say that there was no data with research on HSP and or

Igan that was news that he did not already know except that it has been

proven in a recent study that in many Igan and HSP patients that taking

the fish oil along with one baby asprin (80 mg non'buffered) a day has

helped with the inflamation.

He did a dip stick test on Jennell's urine and she is still 2+ protien

and 4+ blood which is what she has been right along. Of course he did

the usual blood work up and hopefully I will know those results by the

end of next week.

Her BP has been very low for most of the past 3 weeks and was also too

low for his comfort during this visit so he has reduced her Enaparil

from 15 mgs a day to 10 mgs a day and I am to take her bp for a few

weeks and see what happens.

We are also continuing the taper of her prednisone and within 2 months

she should be off it completely. He can not justify her taking the

prednisone if it isn't helping.

In the mean time, I will be on pins and needles waiting for the lab

reports.

I spoke with him privately while Jennell went to do her blood draw and

I asked him to speak to her again about her diet and the neccissity to

drink lots of water so not to get dehydrated and the importance of

having enough rest. I spoke to him about her deniel of the HSP and

Igan and her horrible attitude towards me in general. He said, sorry,

that is part of the process of acceptance of having kidney disease and

on top of it she is a 16 1/2 yr old girl. He said once we get her down

to 2.5 mg of prednisone she should be better where as her mood swings

go. He did speak with her in private after her blood draw during his

physical exam and he said the talk with her went well.

As soon as I get the lab report I will post the results.

God Bless All of you with improved health and lots of happiness

Cathy......Jennell's Mom

August 6, 2005

Hi Cathy,

I can concur that HSP can cause severe joint pain. It gets especially bad

anytime I am sick. I do hope the headaches get better as she is weaned off

the Prednisone too.

Please let us know when you get her lab results back. I pray you are

pleasantly surprised with good news.

In a message dated 8/6/2005 11:19:55 A.M. Pacific Daylight Time,

cwaelty@... writes:

We spoke to him about her headaches, he said that could be from the

prednisone. We spoke to him about how in the past six weeks she has

been having problems with pain in her joints he said that is the HSP.

Hi Cathy,

August 6, 2005

I'm sorry to hear about the lack of response. Some kids (fortunately few &

far between) are just plain steriod resistant. There was a kidn on this

site named April who took FOREVER (seemed like months and months) to respond

to pred. Those months were an enormous struggle because she had various

other medical issues to deal with at that time. According to the last

reports from her mum, she is doing very well now. You might want to check

out NephKids and ask there about steriod resistance. There are other drugs

that can be used to get urine protein down.

Cy

yesterdays visit to Jennell's Neph

> Hi everyone

> For all of you doing well, congradulations and for those of you not

> doing well please know that my prayers are with all of you in good

> times and bad. Keep the faith strong.

> We had an appointment with Jennell's Neph yesterday.

> At our last appointment he told us that he will be hosting a convention

> in January with The Kidney Foundation of Mass, N.H., Vermont and R.I.

> where he is one of the directors.

> We spoke to him about her headaches, he said that could be from the

> prednisone. We spoke to him about how in the past six weeks she has

> been having problems with pain in her joints he said that is the HSP.

> Thankfully she hasn't had any bad swelling, which is unusal and she

> hasn't gained any more weight so that is good. We spoke about her

> being so tired all the time he said that is part of kidney disease and

> a side effect from the BP med. The color of her urine has been almost

> normal so I am hoping that is good also. He is sending her for a bone

> scan to get a base line to go by.

> He told us that he had been receiving lots of data from all over

> regarding kidney disease and the current research being done and would

> be reading it to see if there has been any trials that have been at

> least 70% successful and if he found one we would be trying it on

> Jennell.

> Well, sorry to say that there was no data with research on HSP and or

> Igan that was news that he did not already know except that it has been

> proven in a recent study that in many Igan and HSP patients that taking

> the fish oil along with one baby asprin (80 mg non'buffered) a day has

> helped with the inflamation.

> He did a dip stick test on Jennell's urine and she is still 2+ protien

> and 4+ blood which is what she has been right along. Of course he did

> the usual blood work up and hopefully I will know those results by the

> end of next week.

> Her BP has been very low for most of the past 3 weeks and was also too

> low for his comfort during this visit so he has reduced her Enaparil

> from 15 mgs a day to 10 mgs a day and I am to take her bp for a few

> weeks and see what happens.

> We are also continuing the taper of her prednisone and within 2 months

> she should be off it completely. He can not justify her taking the

> prednisone if it isn't helping.

> In the mean time, I will be on pins and needles waiting for the lab

> reports.

> I spoke with him privately while Jennell went to do her blood draw and

> I asked him to speak to her again about her diet and the neccissity to

> drink lots of water so not to get dehydrated and the importance of

> having enough rest. I spoke to him about her deniel of the HSP and

> Igan and her horrible attitude towards me in general. He said, sorry,

> that is part of the process of acceptance of having kidney disease and

> on top of it she is a 16 1/2 yr old girl. He said once we get her down

> to 2.5 mg of prednisone she should be better where as her mood swings

> go. He did speak with her in private after her blood draw during his

> physical exam and he said the talk with her went well.

> As soon as I get the lab report I will post the results.

> God Bless All of you with improved health and lots of happiness

> Cathy......Jennell's Mom

>

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> Thank you

>

August 7, 2005

Hi Cy

Thank you for responding to my post. I will check out the Nephkids Site.

As you know Jennell’s doc’s did aggressive treatments in the beginning for

her HSP and Igan.

Cytoxan daily for 2 ½ months that did not help so she was taken off of it

due to the high risky side effects, 60 mgs of Prednison daily for 3 ½ months

and then we started a slow taper down because it wasn’t helping and the side

effects were bad for her and we are now at 10 mgs every other day working

down to 2.5 mgs every other day, and Enalapril for the protein spill at 15

mgs a day but now because her BP is dropping too low for comfort he has

dropped her dose to 10 mgs daily, of course the 9 caps of fish oil a day, a

multivitamin, and iron supplement for her anemia and calcium supplement for

her growing bones.

I am also praying for a good surprise when the lab reports come back, but I

am also very worried.

Her Neph and I spoke about other drugs that are available, but he said he

wanted to wait for the lab report but also said that there just isn’t enough

data to support a lot of the drugs being given for this disease.

I do know and realize that every patient is different as to how they respond

to medication.

Jennell is still in her denial stages of all of this and very disappointed

in the results from the doc appointment last Friday.

With Jennell’s Non Verbal Learning Disability everything she see’s and

experience’s is black and white only, there is just no gray area seen or

accepted in her mind, she goes through the day using the point A to point B

method with not being able to sway of the straight ahead direction, she is

very negative and is unable to look forward with a positive attitude right

now so that also is very worrisome for me.

I truly believe that attitude and a positive outlook can change almost any

situation or at least make it seem better.

God Bless

Cathy……Jennell’s Mom

_____

From: iga-nephropathy

[mailto:iga-nephropathy ] On Behalf Of Cy Webb

Sent: Sunday, August 07, 2005 12:00 AM

To: iga-nephropathy

Subject: Re: yesterdays visit to Jennell's Neph