Anemia without low iron

The colonscopy/gastroscopy is not until 8 Feb.

She was taking ferro.

I don't know whether she intolence to gluten.  She is intolerant to lactose. Their is a diet being used in Australia for ibs called the FODmap diet.  This diet reduces the amount of wheat and rye eaten and other things.

I also tried the diet myself and by removing wheat and milk from my diet I have seem a major reduction in my heartburn so much so I no longer take medicine for heartburn.
Catherine

Sarah's colonscopy/gastroscopy is now on Wednesday due to further weighloss.  If these tests do not anything, Sarah will have an urgent MRI.

My daughter's treatment in the last 6 months, shows the importance of get copies of all medical reports if possible.

Regards

Catherine

I am so sorry to hear. Please keep us up to date and tell us when we can do something for you and your daughter. Hang in there and enjoy your days a bit untill scopy time.

Best wishes, Catherine. I hope they can find a cause. And thanks for the excellent advice about medical records. Too often, doctors operate in a vacuum and do not consult with other doctors who may have been involved previously. Patients and parents need to make sure the doctor is aware of all information that may have relevance. Patients and parents may not be able to connect the dots, but the doctor needs to be aware of anything that may have some bearing on the case.

My middle girl Rachel test results have come back clear.  She is just short.  Interestly she has a bone age of 13 years.  Her actual age at testing was 14 years and 11months.  All three have had bone age testing showing growth plates that are between 18-24 months younger than actual age.

Sarah has Crohns disease.  Just a  couple more test to rule something more severe.
Have restart iron today.

Catherine

i am sorry to hear that is it Crohns. Could you please ask them to test her vit B12 levels? The few I know with Crohns and UC all have developed b12 deficiency. Maybe that too is causing her to feel so tired. If that is the case, ask for shots and not for pill form. Why restart iron?

Dori

Sarah has ulceration of the ileum.  I can see the blood in the photos taken of ileum.  This is why the iron tablets have been restarted.

Still very new to all of this the colonoscopy/gastroscopy was only yesterday.

Sarah is having a MRI on Monday, to show how the disease extends.

Seeing dietian on Tuesday, and specialist will see us for a minute for biopsies results.

Full appointment with Specialist on Thursday for treatment plan.

School starts back on 3rd February and this stage Sarah is not well enough to attend.

Will ask about iron and vitimin B-12.

Regards

Catherine

Hi Everyone

Now have confirmation of Crohn's disease.

Disease itself in showing as mild to moderate but she symptoms are considered severe so have started aggressive treatment with steriods. Doctors hope she will back on school next week. 

Was told first the time that she hemoglobin level is just above where transfusions would be considered at 93. 
This comment about transfusions by the specialist (Gastroenterologist) at below 90 would be of interest to you guys.

Catherine

Sarah health has improved since starting treatment and is now back at school.  Her weight is now up to 45.5kgs

Glad to hear the treatment is going well and that she is back in school.

Thanks Narendra

Sarah resumed swimming today, with a short session.  She is doing well.  Hemoglobin is still sitting at 90.

I wonder how all parents cope with all the blood tests and everything.

Sarah is currently have weekly blood tests with them taking a vital each time.  It hard supporting a 16 years old, when they miss and have try the other arm.  Must be so much worse with littles.

Catherine.

Sarah's DNA - Haemoglobinapathy has come back showing no deletional mutations nor common non-deletional mutations of the a-globin genes as described

Although partner testing is still recommended.

Thanks for your support.

I hope Sarah does well, now that you finally have a better diagnosis.

A quick update on Sarah.  She no longer has anemia her current hemoglobin level is 115 up from 90 in 6 weeks

Thanks everyone. Catherine