My daughter and I. Could it all be Thsl minor?

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My daughter and I. Could it all be Thsl minor?
« on: May 22, 2016, 04:33:54 AM »
I am 35yrs old and have 4 children.

When i was as little as 4 i used to pass out a lot. I can remember my first experience passing put i was riding a tricycle in the apartments playground.  Passing out with little warning other than a sudden feeling of a cold sweat and. My eyes darkening. Sometimes not even that. Most sudden passing out would be during exercise. Random times i would have enough warning to sit down before passing out. I would tire easily and get winded. Was always told i was just out of shape for running and stuff and if i did it more i would improve lung capacity etc... Never helped.

I remember that when i was 10 or so i had some lab tests done. I had passed out in the lab. They drew blood and i remember them asking my mom if there were blacks in our family and something about sickle cell anemia.

I never got any treatment and that was about the end of the medical conversations.  I continued to pass out as a teen but not as much. At about 15 i had begun using various drugs and its hard to say what symptoms went with what but i didnt pass out from age 15 - 19 the last time i passed out i was 19 and hiking. Fastforward 15 yrs and i started having strange symptoms suddenly. I had extreme muscle weakness. Fatigue. Mental fog. Muscle pains.  All my blood work for wvwrthing and scans always came back normal except my cbc. And sed red... My values were... Hgb 8.5 mpv 6.3 rbc 2.7 rdw 18.1 wbc 13.9 esr 36.  My iron levels are always too low by a point or so to give blood but i dont know what the gemacrit value was.. Anyhow it fluctuates and i phases if really good and phases if really bad and the cbc and sed rate scores fluctuate accordingly.

My doc r always confused. Think im full of it. Even maxe me go ti a psych for a while whi diagnosed me as understandably frustrated. Lol.

Anyhiw my daughter who is now 13 when she was 2 or 3 had a white poop. My first chuld and i flipped out a bit thunking the worst. Took her in. The dic thought i was nuts
  But she happened to poop in the office and provide the evidence i needed.  The dr. Did a cbc and other tests and came back with severe iron deficiency hmacrit was 2 and she was diagnosed with thalassemia minor..  Dr didnt say much but prescribed high doses of iron and vita c. And told us to switch her diet to red meat and iron rich foods and avoid calcium.

Within a few months she recovered or so was told. And we kept checking for anemia ever chexk up and she was always "ok" not that they dhared the actual numbers with me...

Over the years she has suffered more broken bones than any of my other children from things rhat seem impossible. Like jumping in a full cirxle and when landing her body continued to twist after her feet planted and she broke her leg above the ankle.

Now she is 13. Has been in gymnastics and soccer and other sports most if her life. Very fit girl. But for last two years since puberty she would have general malaise. Just get tired not feel well maybe have a headache.

I would chock it up to girly problems as she wpuld get better with rest and food and a ibuprofen.

In january of this year she went to bed feeling crummy. And awoke about 3 am feeling dizzy and "funny" and her eyes were dark and she couldnt see. He face was pale and lios were blue and she was cold. I didnt kniw what to do. But she looked luke someone who needed air so i told her to do some deep breathing and it instantly befan to help. The er dr said she was maybe dehydrated... And didnt seem over concerned. So weve been making sure she is eztra hydrated with her sports etc.

2 months ago she was in karate and had what looked like an asthma attack gasping and headache. I took her in and they gave her a rescue inhaler. We discovered that the headaches shevwas having and not feelinwell was instantly relieved with the inhaler most of the time.

Last week we were ata renassaince fair and she wasnt feeling wel andnwas turning pasty white. I told her to use the inhaler and it didnt help. She wasnt having a hard time breathing. But usually her asthma is more a slow tightening rather than an instant attack. Any how this time she was walking around  and i have a heaet rate monitor for my husband that i used on ber and hee pulse was 35! I chexk it against me for erroes and then her again and it was the same. I took her to the er. And by the time they saw her she was feeling bettwr. I had given her some food and drink while waiting and covered her with a warm blanket. The er doc said she maybe had a sinus infection and prescribed antibiotics which we syarted. But went to gp on monday. Her pulse was 56 in the drs office after walking up a flight of stairs. I know athletes have lower pulse so i wpuldnt worry but she is turning white and feeling horeible when this happens.

We did a full spectrum blod tests everything we cpuld think of me and the dr. And the obly things that came back was a confirmation if thal minor. Low d levels and low white blood cells. She said to start iron supplements and said that with thal minor it probably wouldnt help and she said they didnt test actual iron levels. And regerred her to a cardio specialist and will chexk anemia and d in 3 months.

She has had several more eposodes this week similar to the one at the fair. But not as severe. As soon as she begins to feel crummy we prak flow to see if its air or something else and if its nit air i make her eat meat and oj and walk around and she gets better. But then is very tires the rest of the day.

I feel like this has been escalating the last few weeks and im worried about giving her iron adter what ive been reading on thal minor not knowing she is iron deff or not.

But does this sound like i am the thal minor carrier and that all of this could be thal related? Is there something more i should be doing or investigating. I dont feel like we are resolving anything by waiting three months. Today she xpuld not attend gymnastics for the first time ever she was to fatigued to even consider her favorite sport. If she goes out to ride her bike she xan only go once around the block before she is tired usually she goes 5 or more times. 5 min on the tramp and shes exhausted. Not asthmas breathing problems. Just tired and wants to sleep and turns pale.


Advice!?

Thank u indavance. I know its long history..

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Offline Danny.H

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Re: My daughter and I. Could it all be Thsl minor?
« Reply #1 on: May 23, 2016, 05:12:19 AM »
Hello Marymanard,
I'm  sorry your daughter is passing  all this. I don't have any doubt us thalassemia related.Unfortunatelly most Medical Doctors act careless because they are teached  that people with thalassemia minor do not suppose o have symptoms . I pass out a lot on my childhood and on my teen years ..I learned to coupe with it knowing when It was going to happen but in other times I did not have how to control it . I remember not being able to grasp air , I even passes out swimming so I decided stay far away from the pool. Fatigue malaise almost no energy to even speak happened some times. Now I'm 40 years old, and couple years ago had a terrible relapse . I reach a point that my thal doc found that I was running in a little bit of testosterone ( I not even knew that we women have a This hormone ) my chemistry was so bad that I was dying. It was thalassemia related also because I had been using " too many hats" my thal doc.  said  I just couldn't be doing so many things and expect to be health . I also aging and my body is tired of dealing with lack of oxygenation. Is the lack of  oxygenation that causes to go lethargic etc.. 
It is frustrating because most doctors are not going to treat thalassemia minor ...they are going to treat when we have very low hemoglobine count and even are going to say that we have some other mutation related to the deletion. I study about my deletions and I know for a fact that my Alpha thal minor is symptomatic.
Daniela

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Offline Andy Battaglia

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Re: My daughter and I. Could it all be Thsl minor?
« Reply #2 on: May 23, 2016, 03:08:31 PM »
First advice is get a doctor who knows when he sees low vitamin D level to give D and not iron. How low is your daughter's Hb level?

The advice about avoiding calcium makes no sense at all. As far as iron deficiency, a full iron panel of tests should be done before giving iron. Long term iron supplementation can be very harmful if not needed. With thal minors, it is absolutely essential that the need for iron be determined before giving iron. Iron cannot do anything at all for thal minor, so unless there is a coinciding iron deficiency, as proven by a full panel of tests, iron should never be given to thal minors.

Please look at this post for the proper nutritional approach to thalassemia. http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.0.html
Andy

All we are saying is give thals a chance.

Re: My daughter and I. Could it all be Thsl minor?
« Reply #3 on: May 23, 2016, 03:56:19 PM »
Andy, the reason I was told to avoid calcium, is that calcium binds to iron, and will cause you to become deficient. he doc said it was about proper food absorption. eat iron rich food with vita C and avoid calcium.....

Danny H. is there a such thing as a specific Thal doc? what specialist deals with this with more knowledge and abilites than the GP. my daughters ped. is very good to work with, but doesn't know everything. so if I ask for a specific blood test she will order it. and give me the results. unfortunately. it seems like they don't know what to do with the results...

her most recent blood tests will be in the mail today I hope. I will post them when they arrive....  she is 13 and so I cannot get the results directly they have to be mailed to her... stupid teen privacy nonsense... anyhow

thank you both for your replies... I am relieved actually to hear this could all be thal related and work to correct this. and I hope this means that hers will be similar to mine and will not be as severe as it could be....

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Offline Andy Battaglia

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Re: My daughter and I. Could it all be Thsl minor?
« Reply #4 on: May 23, 2016, 09:07:51 PM »
The broken bones should be reason enough to ignore the doctor's advice about calcium.
Andy

All we are saying is give thals a chance.

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Offline Danny.H

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Re: My daughter and I. Could it all be Thsl minor?
« Reply #5 on: May 24, 2016, 07:16:51 AM »
Hello Marymanard
I agree with Andy .Please make sure to check the nutrition facts on the link .
I called my doctor my thal Doctor because he is the only Doctor who really understands and confirms that thal minors have symptoms . He is an awesome  Doctor and I recommend him to all of us here . I don't know where you are but I would try to contact him .He could help to adjust your daughter chemistry . Send an email or call .
http://drjimsaid.com/
I hope she gets better soon .
Daniela

 

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