Erin -

 

Thank you for responding, it is much appreciated.  I am very sorry to hear about your son.

The doctors had my daughter on folic acid shortly after she was diagnosed for about 3 months, put her on it again 6 months later for a little over 1 year and now she is on it indefinitely due to her MCV cells being enlarged (a form of red blood cell).  She apparently isn't getting enough in her diet.  She also has been on Zantac-oral solution  (which she loves, she says it tastes good) from the start to help with the possible effects to her tummy from the other meds.  At the present time she is on another 10 day burst (just a word the docs. use to describe a large dose) of 30 mg/day after a previous 5 days.  It is just amazing how quickly the side effects happen.  Does your son take all the meds at once or does he spread them out throughout the day?

 

For the past 4 weeks her RBC hasn't been above 8.9 and her Retic is up at 12.4%.. She is so tired because she isn't sleeping well at night and has no energy during the day.  It is hard to watch her not being able to be a 3 1/2 year old, playing, learning, making friends, etc.  She has been complaining that her tummy hurts, she is so bloated, I not sure what to do for her.  The doctors can't give me any advise either.  I don't like telling her that I don't know what to do for her, it breaks my heart.

 

Thanks again,

 

Rachel Warner

Mom of Rhea (3 1/2) - Evan's Syndrome

Erin Healey <eheals27@yahoo.com> wrote:

Hi Rachel!

 

Welcome to this group...I am a fairly new member and check in once in awhile...

 

My son who is 14 1/2, became ill in August 2006.  He has hemolytic anemia and the doctor's first impressions are that he has Evan's...

 

We just had another drop in counts this past week and his prednisone had been raised and is now being lowered... He had been on 10 mg of prednisone, 1x every 3 days.  Monday it was raised to 40 mg per day and as of Friday, it is now 25 mg per day because his counts are rising...

 

So far, he has been on folic acid 1x per day, zantac as needed and the prednisone.  He has not had to be treated with other meds because he does respond to prednisone so far.....

 

He is older and able to tell me how he feels which helps alot.  He does find the zantac helps when he is on the prednisone... When his counts dropped this time around, he told me his back was hurting and I knew to get him to the Dr right away...with a 3 year old it's not as easy...

 

The prednisone can make them irritable and also wired up at night...it can also cause hunger....    My son is asthmatic and whenever he had prednisone years ago, he used to have this wide eyed look at night...

 

What is a burst of prednisone???  How much is being given to your daughter???  The highest my son has had is 60 mg per day.  Some members of this group have been on much higher doses...

 

Regarding blood tests, my son who gave me quite a run when he was first diagnosed.  he was very afraid of blood being drawn from his arm and even more so of the tourniquet.  I used to break a sweat every time we went for testing anticipating what he would do...   We had one time where 7 of us had to hold him down- he was so upset...  I finally spoke to a psychologist at the center where he is being treated and had my son meet with him.  They took an approach where they made my son in charge of handling his medical testing.  They asked him what they could do to make it easier for him and advised him they were there to help him and not hurt him.  He now has his blood drawn thru a smaller needle in the back of his hand. It's working for him and he is so calm now...  They put the tourniguet around his wrist with a piece of gauze under it.  The difference in his behavior is like night and day...  He's been great...

 

I know it's harder for a 3 1/2 year old...  Any way you look at it, she's going to be upset about testing...  Just take a deep breath and give her a hug and know that you are helping her and not hurting her...  Keep reassuring her....

 

Her tummy may be hurting her from the medication etc...  make sure you do follow the doctors orders and give her the zantac...  My son also eats something before he takes the meds... 

 

What are her counts right now???  If they are low, that can make her tired....

 

I'll keep her in my thoughts...It sounds like you have had a difficult time...I hope she gets better soon... 

 

Have a nice day

 

Erin

 

 

 

Rachel <r_rwarner@yahoo.com> wrote:

Hi to everyone, I am new to this group and am looking for other
people to talk to. I have done a little bit of looking through the
questions which have been asked in the past, I can't believe all the
great information from everyone. I am the mother of a 3 1/2 year old
girl who was diagnosed with Evan's at 6 months of age. I am now
trying to understand more of what she is going through. It is
tougher now that she can actually tell you that she isn't feeling
well, but doesn't have the words to really explain. She has gone
through many different treatments and has been in and out of the
hospital. She has developed many adverse reactions to IVIG and
Rituxan, they've told us that she has become refractory to oral
prednesilone (but they give it to her in 5-7 day burst), has been on
6 MP and Vincristine, and now on CellCept since May of 2005. She
battles sever diarrhea for weeks at a time, which I told isn't from
the meds. but sometimes I feel it is or they are contributing to it.
At the present time, she has had diarrhea for 4 weeks, they increased
her CellCept, put her back on Folic Acid, put her on a 10 day burst
of prednesilone, and want her to take Zantac or Prevacid for her
stomach. That is a lot of medicine for such a little person or
anyone for that matter. She also had a port placed in her chest when
she was 9 months old, we were experiencing problems with it earlier
this year and decided to have it taken out. Now she fears having her
labs drawn because she doesn't want any pokies. At time I feel so
helpless and don't know how to comfort her. Lately she has had no
energy to do much of anything, she doesn't sleep well at night and is
constantly complaining that her tummy hurts. Any information would
be great.

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