Looking for advice

My daughter was diagnosed with thal trait two years ago, periodically she becomes symptomatic, frequent nose bleeds extreme fatigue especially after physical exertion, dizziness.  Normally she rebounds after  a few weeks but this time she isn't, she is also complaining daily of stomach pain and feeling naseuous.

We saw a Dr two weeks ago and had a series of blood work done I have not seen results as yet.  This feels different than any other episodes she has had.  What should I be asking the doctors for.

Shirley

Hi SFTYGAL,

I don't know what tests are being run, but a complete blood count is what is needed. If you can post the results or message me with them once you have them, it will be of some help.

I have a few questions.

How old is your daughter?
Is she now or has she taken iron supplements?
Does there seem to be any connection between eating and the stomach pain and nausea?

If the test I mentioned above has not been run, it should be, and you should also ask the doctor to check for both pernicious anemia, which is a vitamin B-12 deficiency and also for folic acid deficiency, because both can lead to nausea and might also explain some of her general symptoms. If these show normal, a hemoglobin electrophoresis test should also be done to check for evidence of any other hemoglobin variants.

You should be aware, if you are not already, that one of her parents is also thal minor. Also, she should know that when it is time in her life to consider children of her own, that her partner should also be tested for thal trait, as two minors can produce a major.

Hi Andy,

Will get a copy of results and post info asap.  She is 15 years old and we have been told that she has the trait.  The nausea seems to be worse with exercise. Symptoms that she has had throughout life seem to coincide with when she is growing. She is very active so this is a problem.   After reading some of the posts on this site I have her taking folic acid.

We have a hematologisy at MAC Childrens hospital, who I was told that she didn't need to see again, I think she does, so I am going to call them today.

Shirley

Have not been on this site for a while and have just read what I posted over two years ago.  B12 was ok.  Not sure if she was tested for pernicious anemia.  Kianna has been suffering from bouts of nausea, vomitting, low blood pressure (blacked out), feels cold all the time, and FATIGUE!!! for approx a month.  Dr. says if it gets worse go to ER, ER says go to family doc.  in the meantime nobody is taking this seriously. Ultrasound and Xray normal (abdomen) and blood work ok except for low HB.

She has not  been well enogh to attend school for 3 weeks, went back today for first day had bout of sever pain and came home and went to sleep, its 11 and she is still asleep (7 hours) I tried to wake her up but she said she was very sleepy.

What do I need to do to get doctors to listen that this is not normal

Hi Shirley,

What is her Hb level? Has there been any investigation of possible digestive tract problems like celiac disease?
I would suggest she gets more salt, as this can help with low blood pressure and may prevent her from passing out, especially when she feels that way. The body will react to salt quickly and may help her overcome that faint feeling. I've had some problem with this in hot weather when active and salt snaps me right out of it.

Is she currently taking any supplements?

I have similar issues often, has she been checked for thyroid and other hormonal tests?

Also sometimes hidden infections can throw the body off guard. Antibiotics instantly help me, even though we're not always sure where the infection is.

I take some salt/sugar with lime water, to tackle the low BP.

When I last posted back in November her Hgb was 125-what I have discovered is that she was dehydrated-she is very prone to this and also I believe had an interaction to the supposedly Benign medication prevacid (can adversely affect blood results)  Before I made the decision on my own to take her off meds she was sleeping 20 hours a day, when she wasn't asleep she was nauseated and dizzy, had brain fog, low bp, irratible, chills, etc. Unbelievably I saw multiple doc, er visits and talked to pharmacy-with no advice-  I took my daugther of this med on Sunday and when I came home on Tues, she was bouncing off walls and went 36 hours straight without sleep before crashing.   She rebounded to about 80% of normal for a few weeks. About a month ago she started getting dizzy, faint, nausea, low bp.  Latest hgb 111-allergy doc is testing for flushing disorders, the only supplements she is on are ones you have pointed out to me-wheatgrass and folic acid. She is extremely fatigued, sleeps 12-14 hours and wakes up tired.  Her doc calls her his "House Episode"--all I want are answers

You may have to go to Toronto to find a hematologist familiar with alpha thalassemia. There are a couple people here who should be able to provide details.

As always with alpha thal, be prepared to be told it's not the thal. However, the swollen spleen does indicate hemolysis (premature break down of red blood cells) is occurring, so it's difficult to separate this from thal. Please review the list at
http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830
and see if there might be something that is setting off hemolytic episodes. Any beans and legumes must be considered as potentially harmful, in addition to fava beans, when a patient has unexplained hemolysis. Beans, peas, peanuts, are all among suspect foods. A dietary diary might reveal if the hemolysis is diet related. The list of chemicals that cause hemolysis is long and another person with favism told me about laundry dryer sheets as a culprit. Avoid fabric softeners. Any synthetic chemical may be at fault. She should avoid all chemical fumes, even gasoline fumes at the gas pump. Again, making notes of any exposure can help eliminate or prove possible causes of hemolysis. Also, review any drugs she may be taking to see if there is anything that may be a cause.

It is possible that another medical issue is adding to the problems, but when hemolysis causes an enlarged spleen, thal related issues do need to be investigated first.

Thanks Andy

I had no idea, the reaction to t he Prevacid was crazy, I went to the drug interaction site of the FDA and when I looked at the top 10 adverse reactions to this med, she had 7 of them.  The pharmacist of course thought I was crazy.

I would definitely like to know about a doc familiar with alpha thal in the Toronto area.