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Kids' Health Kids' Health

New here and need advice...

Posted by on Aug. 10, 2012 at 12:30 AM
  • 15 Replies

Hi my name is Lindsay and I have two kids........a 3.5 year old son, Keanan, and a 13 month old daughter, Kyleigh.

This summer has been horrible health wise for my kids.  My son has had hand, foot, and mouth twice.  

But the worst of the summer has been my daughter.  I really need advice on what to do.  I feel really lost and unsure of what to do with the all that is going on.  So this may be long but here is what has been happening with my daughter.

June 29th- one day after my daughter turned 1 she had her one year check up.  I mentioned that she was bruising very easily.........a few weeks earlier she had bumped her face and had a huge black eye for 3 weeks.  So her Doctor did a blood test just to make sure.........she called me that night panicked that I needed to rush my daughter to the children's hospital 1 1/2 hours away that her platelets (typically at 150,000) were only at 19,000 and it was a very serious danger.  So we rushed her up there.  They ran tests and concluded that they believed she had ITP and had had it for some time now and that she should just continue to get better.

She was checked July 2nd and her platelets were at 36,000 so they assumed she was fine.  That ITP typically goes down and then constantly improving.  So it should just get better. But they wanted to continue to see her weekly.

She saw a hematologist/oncologist and he assumed the same thing.

That week she had three days of random fevers........between 101-102 but no other symptoms of illness

On July 11th she had her blood draw.  Her platelets had dropped to 26,000 and her white blood count was high and her hemoglobin was low.  Leukemia was mentioned.  They looked at her blood on a slide and they saw abnormalities so they sent it to a specialist.

The following day they called and said the specialist did not see abnormalities.

So we went back to weekly checks.

On July 19th her levels jumped to 114,000 but her hemoglobin was low so she was put on iron.

She had the following odd things happen- throwing up for an entire day (called doctor assumed it was milk allergy although she is fine now)

-Massive diarrhea that is dark (they assume it is a virus)

-Horrible diaper rash (prescribed a cream)

-blood in her snot (again they assume a virus)

We saw the doctor on August 2nd and her levels went down to 110,000 and although she is on iron her hemoglobin dropped (normal is 12-15) she dropped from 10.9 to 10.1.  So they upped her iron and had me take some stool samples.  She was also only having 2-3 diapers daily so they put her on pedialyte constantly.

So now this week.....

I called on the 7th because she spiked a 102 fever.  They told me it was probably a virus.  Called the 8th asking to talk to her doctor..........talked to her nurse explained the random fevers (she is completely fine but the fever......no sore throat, no coughing, no sneezing, no throwing up) and she said she would call back after talking to the doctor..........no call back.  Today she still has fevers and the doctor never called back.  She is exceptionally moody and wants me to pack her everywhere.  She is also not sleeping well and waking up screaming constantly.

I guess I am just confused.  They went from constantly seeing how she was to not caring at all!  If I call they act annoyed and like I am just thinking she is sick..........like I am crazy.

Should I find a new doctor?  Do you ladies think I should be worried?  

by on Aug. 10, 2012 at 12:30 AM
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Replies (1-10):
frndlyfn
by on Aug. 10, 2012 at 12:40 AM
1 mom liked this

I would find a new doctor.  Also the pedialyte could be causing stomach issues.  Try just giving her water plain and 4 oz of juice a day instead of all the pedialyte.

Linz0522
by on Aug. 10, 2012 at 12:47 AM

They had told me to give her a lot to get her hydrated.  But truthfully I gave her about a cup a day.........and she hasn't had it in at least 2 days.  But she is still breastfeeding so that is mainly what she gets besides solid food

Quoting frndlyfn:

I would find a new doctor.  Also the pedialyte could be causing stomach issues.  Try just giving her water plain and 4 oz of juice a day instead of all the pedialyte.


frndlyfn
by on Aug. 10, 2012 at 12:50 AM

Nursing will give her the fluids she needs and water could help her learn how to use a cup if she doesnt know how already.  DD has been sick but not as sick as your little one and thanks to nursing she has never been dehydrated.

Quoting Linz0522:

They had told me to give her a lot to get her hydrated.  But truthfully I gave her about a cup a day.........and she hasn't had it in at least 2 days.  But she is still breastfeeding so that is mainly what she gets besides solid food

Quoting frndlyfn:

I would find a new doctor.  Also the pedialyte could be causing stomach issues.  Try just giving her water plain and 4 oz of juice a day instead of all the pedialyte.



TigerofMu
by Sonja on Aug. 10, 2012 at 7:47 AM

I'd be looking for a new doctor.  I definitely think that you need to at least be exploring the problems she's been having.  I don't have any experience with those particular symptoms, but it sounds like a worrisome combination.

PrincessZ20
by on Aug. 10, 2012 at 11:05 AM

I think a new doctor might be in order.  You shouldn't feel like they don't care or that they're sick of her/you.  They need to take it seriously - it sounds like there could be something causing it and they need to figure that out and fix it rather than just treating the symptoms.

Good luck! 

Vertical15
by on Aug. 10, 2012 at 11:19 AM

I'm also agreeing on finding another Dr.  It took us three years to have my son diagnosed for his PFAPA after his other Dr kept brushing us off.  I wish you the best.  *hugs*

mshue7401
by on Aug. 10, 2012 at 11:38 AM

 As a mom I personally would find a doctor out of state and start with some specialists. I wouldn't worry as much as I need answers. I would travel far and wide to just get an answer.

Have you thought about taking an alternative route? Like chinese medicine.

egyptian_mommy
by on Aug. 10, 2012 at 9:00 PM
I agree with finding a new Dr. That sounds pretty serious and the Dr shouldn't be brushing you off.
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Nicholy10
by on Aug. 10, 2012 at 9:10 PM

I'd get a new doctor. 

MELRN
by on Aug. 10, 2012 at 10:16 PM

Children's Hospital ONLY

have they checked her for tick born illnesses? erlichia?  (sp?) and how about her spleen?  how about an ultrasound of her spleen?


also to prevent them from torturing your dd anymore you and your husband should go to a local hematologist and get tested for ALL genetic bleeding disorders---(even if your labs are normal you can still have a genetic disorder)  my kids have Von Willebrands disease  which in turn runs their Plts low (like 40)  then if they find the issue with a parent you can better direct the medical team for your child (sad state of affairs in medicine now a days)

Ok thats what comes to my mind

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