5 year old with PLE

[debemom]

Just got the phone call about blood results. Her protein level has not changed at all which isn't surprising since she won't eat.

They also noted that her liver enzymes are not elevated which they expected due to the prednisone which now makes them think she is not absorbing the prednisone either.

They havent made a decision yet about doing the prednisone through injections instead of pills.

I hope Cookie starts getting better soon. I've followed the posts about her having a rough patch again. Praying for your baby too!!!

[ladyjane]

Originally Posted by debemom

Just got the phone call about blood results. Her protein level has not changed at all which isn't surprising since she won't eat.

They also noted that her liver enzymes are not elevated which they expected due to the prednisone which now makes them think she is not absorbing the prednisone either.

They havent made a decision yet about doing the prednisone through injections instead of pills.

I hope Cookie starts getting better soon. I've followed the posts about her having a rough patch again. Praying for your baby too!!!

Yes, the ALKP is usually elevated when they are on prednisone. I imagine it is a good thing that the protein levels are steady. I hope.

Do hope the Mirtazapine works for her and she starts eating.

Thanks for the well wishes and prayers for Cookie. I will see what the specialist says tomorrow.

[debemom]

Originally Posted by ladyjane

Yes, the ALKP is usually elevated when they are on prednisone. I imagine it is a good thing that the protein levels are steady. I hope.

Do hope the Mirtazapine works for her and she starts eating.

Thanks for the well wishes and prayers for Cookie. I will see what the specialist says tomorrow.

The protein levels staying steady is NOT a good thing. Her level is extremely low, because of the PLE she isn't able to absorb the protein, and not eating means there isn't anything to absorb.

I'm really struggling tonight! The mom in me (the protector of this small innocent creature) is debating going against medical advice and just feeding her some white fish and yams, or some egg whites!

She did eat really good tonight. One crunchy bite at a time after I dipped it in warm water. Trying not to get my hopes up but we shall see what tomorrow brings.

[ladyjane]

Originally Posted by debemom

The protein levels staying steady is NOT a good thing. Her level is extremely low, because of the PLE she isn't able to absorb the protein, and not eating means there isn't anything to absorb.

I'm really struggling tonight! The mom in me (the protector of this small innocent creature) is debating going against medical advice and just feeding her some white fish and yams, or some egg whites!

She did eat really good tonight. One crunchy bite at a time after I dipped it in warm water. Trying not to get my hopes up but we shall see what tomorrow brings.

I didn't mean it was great....but they are not dropping is what I meant.

Glad she ate something! Hope it continues!

[debemom]

Update - I'm cautiously optimistic that Holly might just be a little better today. She is on Mirtazapine now, and we are now able to get her to eat at least a little 2 or 3 times a day. I am adding some shredded parmesan cheese on top of her food so she can smell it. She LOVES the cheese.

She woke up 3 days ago with her tummy noticeable smaller from fluid. They changed her antibiotic to a different kind for 10 days, and her diarrhea was back and really bad for one night.

I know these are all just little things, but I'm calling it huge from where she was to where she is today.

Purdue has asked for a list of all the protein sources she has had in the past 6 months, and carbohydrate sources. They are working on her diet, so I know what to cook.

[ladyjane]

Originally Posted by debemom

Update - I'm cautiously optimistic that Holly might just be a little better today. She is on Mirtazapine now, and we are now able to get her to eat at least a little 2 or 3 times a day. I am adding some shredded parmesan cheese on top of her food so she can smell it. She LOVES the cheese.

She woke up 3 days ago with her tummy noticeable smaller from fluid. They changed her antibiotic to a different kind for 10 days, and her diarrhea was back and really bad for one night.

I know these are all just little things, but I'm calling it huge from where she was to where she is today.

Purdue has asked for a list of all the protein sources she has had in the past 6 months, and carbohydrate sources. They are working on her diet, so I know what to cook.

YAY! I am SO happy to see this update!

I went through the diet history thing with Cookie...that is how she ended up on the tilapia and sweet potatoes...she had never had them. I am very excited for you!

Cookie is better....they are reformulating her diet. Now that she has pancreatitis as well, they are wanting lower fat.

[debemom]

It is with great sadness I have to let you know that Holly crossed the rainbow bridge yesterday morning.

i could say I am heartbroken, but really I just think I am numb from the pain of losing her. She has been my constant companion, and even though I know in my heart we did everything we could, I still feel like I failed her.

Thanks for listening!

[ladyjane]

Oh no.....you did not fail her. I am soooo very sorry for your loss of your sweet baby.
You did so much for her and tried so hard. So heartbreaking....

I wish I had the words to make it better.

You will be in my thoughts and prayers.

RIP Holly

[Lilah Charm]

Oh, I just read your whole thread and I am so sorry to hear about yours and Hollys struggle. She is lucky to have such an advocate and you clearly worked hard to save her. I am so sorry for your loss

[Maximo]

I am very sorry for your loss of your beautiful Holly. You did everything humanly possible for your girl. She was loved, and she was very lucky to have you as her mom. I am praying for your comfort and peace.

Run free on the other side of the Rainbow Bridge, Holly.

[fauna]

Yeah that's right she will be okay soon! Pet nutritionists? That's a good idea it will help you and advice you for what you need to do for her faster recovery. Just always monitor her improvements everyday.

[Micah my love]

I am so sorry for your loss.....Hugs

[gemy]

I am so sorry for your loss. RIP Holly

[EarthAngel]

I am so very sorry to hear of your sweet Holly's passing.

[Wylie's Mom]

I am so incredibly sorry for your loss . You did everything you could for her, and that was a real blessing.