Sooooo glad I've found this forum

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Offline mother_of_two

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Sooooo glad I've found this forum
« on: September 29, 2008, 07:00:24 AM »
Hi everyone,

Just found your site. Haven't had much time to read through all its content (look at my nick  :wink), but surely will.

First thing I want to tell you: its a great site, cause the people here are great; strong and good souls. No one wrote to me yet, but I already don't feel so scared and lonely though I'm still worried till my witts ends.

So, about my family; as you may guess I've got 2 children. My daughter (currently 2 years 4 months) was diagnosed with thalassaemia beta minor almost a year ago. It was a shock for me then, as I hadn't heard much about the disorder previously. My husband was not aware of being a carrier of it, nor had anyone of his family. I came to terms with it after reading more about it (doctors haven't been of much help, I'm sory to say; well, the disorder is fairly rare in my country). Luckily Emilia doesn't have almost any of the symptomes, I learned some of you folks with "minor" do. She is what we call "pure silver", full of energy, active, always on the run (literally).

8 weeks ago I gave birth to a wonderful boy, Filip (Philippe). He is doing great, gaining weight and length even faster then average for a breast fed child. But his hemoglobine level goes down inexplicably fast. A week ago it was only 5.7 mmol, and had dropped 7% within previous 10 days. Today we have to make another blood check. If his Hb level is below 5.0 he will get blood transfusion; he is too young for any diagnostics - only that much I got from the doctor (hematologist).

I'm at lost. I'm not a carrier of thalassaemia gene...    But I have another blood condition - spherocytosis, though a very mild one. Have kept my spleen in, in spite of 2 pregnancies and some serious illnesses in the childhood.

Could these things somehow strenghten each other's symptomes? How old were you (or your chilren) when diagnosed? what the symptomes were? Filip is strong and developing well. No one would say there is anything wrong with him, if they haven't looked at his blood results. The only thing he is easily brused and the bruses stay long time. But I read even some of minors have it, so...

I strongly hope he will not need transfusions on regular bases. Well I have till afternoon (its morning now) to find out, haven't I.

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Offline Andy Battaglia

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Re: Sooooo glad I've found this forum
« Reply #1 on: September 29, 2008, 07:57:02 AM »
Hi mother_of_two and welcome,

It is rare but the combination of beta thalassemia minor and hereditary spherocytosis is known to exist and the results can be hemolysis, requiring transfusions and iron chelation. The treatment is the same as for spherocytosis, There is some mention of this occurrence at these links.

http://cat.inist.fr/?aModele=afficheN&cpsidt=14396895
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The spontaneous occurrence of hereditary spherocytosis (HS) and β-thalassemia in the same patient is a rare event...When red blood cell indexes reveal a possibility of a β-thalassemia carrier state with the symptoms of hemolytic anemia, HS should be considered.

http://www.unboundmedicine.com/medline/ebm/record/1948000/full_citation/Coexistence_of_hereditary_spherocytosis_and_beta_thalassemia:_case_report_of_severe_hemolytic_anemia_in_an_American_black_
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...case of hereditary spherocytosis (HS) and beta-thalassemia...The diagnosis rested on clinical presentation, family history and specialized laboratory findings. The tendency toward hemolysis of spherocytes and thalassemia red cells may explain the severity of anemia in this patient.

There is a full review of hereditary spherocytosis  at http://www.emedicine.com/med/TOPIC2147.HTM

Time will tell if regular transfusions are required but with proper care, including transfusions and chelation, a splenectomy after age 6 is the normal long term treatment for spherocytosis. If this is the case, it is a serious condition, but after splenectomy, transfusions are normally no longer required.

I would suggest showing these links to your hematologist, to help understand what may be happening and how to proceed. This is a rare combination and few doctors will have any prior experience with it. An accurate diagnosis should be the first step, and these articles may provide some guidance for the doctor. It is very important to not allow the hemoglobin levels to drop low for extended periods of time during a child's development. Normal growth will not occur with chronic low Hb levels, and this can cause long term damage. It is essential to transfuse as needed. If this combination does exist in your child, please remember that the transfusions will only be on a temporary basis, until the child is old enough to safely have the splenectomy.

I know this is frank, but if your child carries both thalassemia trait and spherocytosis, the sooner treatment begins, the better.
Andy

All we are saying is give thals a chance.

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Offline poo gill

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Re: Sooooo glad I've found this forum
« Reply #2 on: September 29, 2008, 11:31:46 AM »
Hi  Andy

When Prat was diagnosed, Dr Marwaha first carried out tests' for spherocytosis, Cos the blood electropherosis report for( HBF and adult HB) takes 2 weeks.  I am checking his  old  reports now and they say IgC negartive and C3D negative. Basically they did not find any spherocytes.

 When for sperocytosis results  came negative, he broke the bad news to us that Prat has thal. As I remember sphercytosis is lesser of the 2 evil.
"We are like angels with just one wing. We can only fly by embracing each other." 

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Offline mother_of_two

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Re: Sooooo glad I've found this forum
« Reply #3 on: September 29, 2008, 11:39:16 AM »
Thanks for your very fast answer. Didn't expext a reaction so soon. Especially, it was middle of the night were you are, wasn't it.

I'm going to read the links content, hope it will let me understand the desease's nature better.

I'm familiar with spherocytosis treatment and conditions. My mum had her splenectomy, when she was almost 50. That was when I found out I've got the condition too. In everyday life I can completely forget there is anything with me. Of course, eating and generally living healthy helps a lot. Pregnancies were a bit of an issue, but everything went well.

Waiting for Filip's blood check results (1 hour more). Keep your fingers crossed for him.

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Offline Maako

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Re: Sooooo glad I've found this forum
« Reply #4 on: September 29, 2008, 03:16:49 PM »
Welcome to the site, mother-of two  :smiley

Don't be surprised by the quick answers from Andy, that is how he is, always looking after us, and beleive me you are in good hands here.

Crossing fingers with you for the best  :hugfriend. Keep us posted
Maako

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Offline Sharmin

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Re: Sooooo glad I've found this forum
« Reply #5 on: September 29, 2008, 03:26:02 PM »
Welcome Mother of two,

I hope that your son's condition improves as he grows.  Thalassemia has the potential to cause problems if another condition co exists.   I hope that you are able to find the treatment you require. 

We wish you the best,

Sharmin
Sharmin

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Offline mother_of_two

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Re: Sooooo glad I've found this forum
« Reply #6 on: September 29, 2008, 07:48:29 PM »
Hi everyone,

Thank you for thinking about us. Filip's hemoglobine was 5.4, so a drop again, but with a slower day rate then before. So, we have another transfusion free week ahead of us. There is still hope. And anyway, the latter we start transfusing, if we have to, the better for him. Here doctors don't recommend transfusions below 3 months of age, unless it's absolutely unavoidable.

Do you know if the slower hemoglobine drop rate can promise some improvement, or it's just always slower, the less of it is left?

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Offline Danielle

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Re: Sooooo glad I've found this forum
« Reply #7 on: September 29, 2008, 08:34:50 PM »
Welcome to the family, Mother of two!  :hithere

I believe that the slower drop in hemoglobin has to do with the fact that your son still has fetal hemoglobin at this point in his life, which holds oxygen for a longer period of time than adult hemoglobin does.  The lower the hemoglobin gets, the more the body tries to compensate, so you may see a slower reduction rate with the fetal hemoglobin kicking in.  Someone correct me if I'm wrong, though.

I think it's too soon to tell with your son being only 8 weeks old, but even if he does need transfusions, he is still capable of outliving you. :)   Many of us get regular blood transfusions and we do everything that a person who doesn't need blood transfusion can do.  I know it's scary, but we are all here for you, and we'll support you.  When I said welcome to the family I really meant it, because this place has the best group of caring and loving people you will ever find on a message board, in my opinion.  :hugfriend

I wish you the best of luck with everything.  If you need to ask questions or vent, we are here.  :bighug
« Last Edit: September 29, 2008, 08:43:08 PM by Danielle »

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Offline Zaini

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Re: Sooooo glad I've found this forum
« Reply #8 on: October 02, 2008, 07:51:02 PM »
Hi mother of two,

Welcome on the forum, i am also a mother of two :) ,i hope you'll get proper diagnosis for your son,because hb of 5.4 is really low.

Wishing you the best of luck.

Zaini.
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Offline Sharmin

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Re: Sooooo glad I've found this forum
« Reply #9 on: October 02, 2008, 08:56:19 PM »
Mother of two,

My son received his first transfusion at 3 months - his hg was 4.4 at the time.  As he approaches 3 months his fetal hg may decline considerably so it may be a good idea to keep an eye on his hg or sudden changes in his general health or appearance. 

I wish you all the best,

Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Sooooo glad I've found this forum
« Reply #10 on: October 03, 2008, 12:09:01 AM »
I have to point out that the hemoglobin measurement stated here by mother_of_two is not in the same units we normally see. An Hb of 5.7 5.7 mmol is about 9. Still low for that age but not drastically low. If it levels off at this range, hopefully it means no complications with spherocytosis in addition to the thal minor.
Andy

All we are saying is give thals a chance.

Re: Sooooo glad I've found this forum
« Reply #11 on: October 03, 2008, 04:33:05 AM »
Hi,

All infants( whether thal or non -thal) in the 2-3 months time frame have physiological anemia as the fetal hemoglobin goes down,and the adult form starts kicking in.So, the count is low during this period.So, there is still hope.

Keep the prayers going and all the best!

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Offline mother_of_two

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Re: Sooooo glad I've found this forum
« Reply #12 on: October 06, 2008, 12:22:29 PM »
Hi,

Thanks everyone for your answers and welcomes.

Yes, Andy, I wanted to clarify it too. Here the results are usuly given in mmol/l, what you talk about is g/dl. Filip's last week's Hb of 5.4 mmol is for you 8.73.

A week has past since I posted here first time. We are after another blood check, waiting for the results...

Hope is our friend.

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Offline Zaini

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Re: Sooooo glad I've found this forum
« Reply #13 on: October 06, 2008, 03:03:48 PM »
Wishing you luck. :goodluck

Zaini.
« Last Edit: October 09, 2008, 11:30:48 AM by ZAINI »
^*^Xaini^*^

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Offline mother_of_two

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Re: Sooooo glad I've found this forum
« Reply #14 on: October 09, 2008, 10:42:50 AM »
Hiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiii!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm so happy.

Filip's Hb went up to 10.02 g/dl  :cheer :cheer :cheer I hadn't even hoped for so much. Would be happy, if it just stayed at one level, however low.
 :stars :stars :stars
Mayby he will just be minor, without any additions like his sister.
We are going to control his Hb of course. And go for the diagnostics when he is 6 months, if his Hb stays on acceptable level till then.

 

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