Thalassemia Patients and Friends

Discussion Forums => Miscellaneous Questions => Topic started by: Manal on April 17, 2007, 06:45:21 PM

Title: Fever
Post by: Manal on April 17, 2007, 06:45:21 PM: Hi

Does fever affect HB?? Yesterday, i did a CBC for Ahmad and i was shocked to find the HB 5.8 .

It was never that low. Fourthen days before i made the test he had a bacterial infection and had a continues fever for 4 days and it reached 40c and the min was 38.5c. Yesterday and after one hour from having his blood withdrawn for the CBC, i found that he has a temperture of 38 and a ruuny nose. (Probably this time is just a cold because the White blood cells result was normal and i will be visiting his ped in two hours time to what he is having right now.)

Back to yesterday, i went to his hema and as soon as she heard this reading she told me that if she finds his spleen very enlarged she will transfuse him ( i was really shocked because this is the first time to mention transfusion). When she checked him she found that the spleen has decreased than the previous month, it is only 3cm (a month ago his spleen was 5 cm and his HB was 6.4. ).

It is really very strange because all the expectations was a spleen more than 5 cm. We ended up that we will give him another chance and after 10 days i will do another CBC in addition of taking Vitamin E (400mg) day after the other instead of twice per week.

So do you think that all the psssing fevers could have een the reason for such very low HB???
By the way his activity is the same even in fever time

Manal
Title: Re: Fever
Post by: Andy Battaglia on April 17, 2007, 07:55:24 PM: Sickness and especially infections lower Hb. Infections will also give temporarily high ferritin readings which should be ignored. If your son was to need a transfusion it would be most likely an infrequent thing. Intermedais do sometimes occasionally need to transfuse. The positive thing is your son's spleen did not enlarge more which indicates it is not excessive hemolysis causing the lowered Hb.
Title: Re: Fever
Post by: Manal on April 18, 2007, 01:35:56 AM: Thanks Andy, your reply gave me some comfort, but do you think 10 days is enough time to see any change??

Manal
Title: Re: Fever
Post by: Sharmin on April 18, 2007, 02:18:20 AM: Hi Manal,

I hope Ahmad is feeling better.
I have noticed that my son's hemoglobin drops more after he has had an illness or an infection.

I hope your little guys is better in no time and that his hg recovers soon. All the best my friend!

Love Sharmin
Title: Re: Fever
Post by: Hallu on April 18, 2007, 05:51:33 PM: Hi Manal,
Hope your son is feeling better now.
About a year ago I had a viral infection and it dropped my Haemoglobin from 8 to 6.8. As a result I was transfused. As per my doctor, in case of Viral infections, spleen becomes more active and breaks down more RBCs resulting in lower Hb.
For bacterial infections, I don't know ...but it might be same as viral infections...also spleen helps in fighting bacterial infections.
I would also like to mention that at the time of infection(viral) my spleen size did not increase.

Hope Ahmad recovers soon.

--Hallu
Title: Re: Fever
Post by: Manal on April 18, 2007, 06:05:45 PM: Thanks Sharmin, thanks Hallu for your replies

I appreciate your concern so much :hugfriend :hugfriend

Love
Manal
Title: Re: Fever
Post by: Andy Battaglia on April 18, 2007, 09:52:08 PM: Hi Manal,

If your son needs to transfuse it should just be an isolated instance because he's been sick. It won't mean the beginning of regular transfusions. When you read about intermedia, you often see mention that intemedias need an occasional transfusion and this is one of those times when it may become necessary. It may be necessary to get his Hb back up but it shouldn't be anything more. How soon his Hb goes back to its normal level will be related to when he is completely over the illness and the blood can rebuild.
Title: Re: Fever
Post by: Manal on April 18, 2007, 11:07:49 PM: Thanks Andy for your reply. It makes alot of sense. Probably this will be the only solution if it didn't increase in the coming days.

Manal
Title: Re: Fever
Post by: Zaini on April 19, 2007, 01:26:05 PM: Hi MANAL,

I hope Ahmed is doing well by now, according to my experience with Zainab yes fever do cause a low hb,Zainab just suffered from malarial fever and her hb is 9.3 in two and a half weeks after transfusion, normally her pre transfusion hb is 10,at four weeks,and it's not the first time, everytime after suffering from fever her hb goes down.
Manal , i am not a doctor but after reading everything here,i think your heamo's advice is not wrong,occasional transfusions won't hurt that much,plus this low hb can cause bone deformities.Anyways,wish you the best ,give my love to Ahmed. :hugfriend

ZAINI.
Title: Re: Fever
Post by: jzd24 on April 19, 2007, 01:43:21 PM: Hi Manal,
I hope Ahmed is feeling better. In my experience, I also seemed to have lower hemoglobin levels when sick. Hopefully Ahmed's level will go up when he is better. You are both in my prayers. Love, Jean
Title: Re: Fever
Post by: §ãJ¡Ð ساجد on April 19, 2007, 04:24:01 PM: Get well soon Ahmed!!

(http://www.iguk.co.uk/ProductImages2/2184.jpg)

:getwell

Take care, Peace!
Title: Re: Fever
Post by: Manal on April 19, 2007, 11:44:21 PM: Thanks A lot Zaini and Jean :hugfriend

Sajid, thanks for the picture, Ahmad saw it and he loved it so much. he said that from now on you are his friend :biggrin

Manal
Title: Re: Fever
Post by: §ãJ¡Ð ساجد on April 20, 2007, 05:22:16 AM: :grin

I'm a Spidey Fan myself and here is Spidey in my favourite "Symbiote" form in the classic comic books which you will also see in the upcomming "Spiderman 3" movie.

(http://i172.photobucket.com/albums/w29/sajid_rauf/news-symbiote-1.jpg)

Take care, Peace!

Edit: Facing problems with pictures again!!!. Uploaded to photobucket
Title: Re: Fever
Post by: Manal on April 20, 2007, 09:16:14 AM: Sajid, you are driving him crazy, he is sending you all his hugs and kisses :rotfl :rotfl

Manal
Title: Re: Fever
Post by: Manal on May 01, 2007, 03:36:47 PM: Hi all

I want to give you an update on Ahmad's case. After 12 days from the last CBC ( HB was 5.8 and spleen was 3 cm), the new one showed that his HB increased and became 6.1 and the spleen is 5 cm.
Actually i was happy and thought this was a good sign.

Then when i went to the hema, she checked him and was not impressed by this increase though we had his HB at 6.1 many times before.

I had a question for her which was his growth, Ahmad is the normal rang of growth in terms of weight and height and is still in the normal range. in addition he is average in his class at school, i mean there are shorter than him and there are taller than him. He doesn't look odd. In spite of all this i get the feeling that he is ''little'', some people say that he looks like 3.5 or 4 years and he is actually 4.7 years
Though his father and me are not tall,but when Ahmad was a baby it seems that he was taller than normal to the extent that when he was 6 month old, his clothes were the size of 2 years, so did his growth rate slowed down as a result of his low hb although he is in the normal range??

Actually the hema, didn;t answer me in details as my question were but she suggested starting the hydroxy urea and she said that all his enrgy is directed to the spleen enlargement and she wants to divert this enegy to his growth. Actually i was silent because the last thing i wanted to give him is this medicine. I wanted him to go on the resveratrol and aloe vera instead of this . But it seems that the disease is faster than these natural supplements.

Because of the surprise i forgot to ask her what is the difference between now and before. I mean nothing changed in terms of his spleen, liver, Hb, normal growth. Why give the hydroxy now.

She wanted to give me a chance to think, but a thought came to my mind telling me don't interfere too much cause i may be harming him and i told her that she is the doctor and she is the one to decide.
Actually his doctor seems to like this medicne and when i discussed with her the terrifying side effects found in the pamphelet of the medicine, she told me that every patient has his unique expierence with the medicine. Some patient react positivly in one month, some in 2 or 3 and others don't at all. Some have most of the side effects and others have none. No one is like the other and she is going to moniter the kidney and the liver functions and whiteblood cells every month.

She is giving it to 25children and they are doing fine. She even gave it to some one who is now having two kids and has been on it for 15 years

For me i feel i am giving poisinous to my child i wanted to think of butyrates componds but i knew they are not oral yet.
i am supposed to start it this morning and now it is 6:30 pm and didn't give it to him yet. I called his hema and told her to give it to him late at night cause one of the side effects is nausea, vomiting, dizziness... and it is better to pass through all this while he is asleep cause he is in school at day time. She told me no and give it a try cause some patients don't feel this at all.

Actually i am mierable and confused but i don't have any options. Could any one give me a link about anything concerning hydroxyurea or any precautions.?

Andy, do you think i should continue the resveratrol and the aloe vera in addition to the hydroxyurea??????????

Manal

PS by the way i asked te hema about the retrodifferination and whether it suits Ahmad or not and is it a cure or mangement. Is it once and for all or it should be made every now and then.

She answered that what she knows is that they want people to go to the UK to go through this process and is very promising, but concerning the frequency she still does not know and have to talk to the people involved in this in the coming conference and will tell me later whether it suits Ahmad or not
Title: Re: Fever
Post by: Andy Battaglia on May 01, 2007, 03:52:23 PM: Hi Manal,

I don't think toxicity is a serious issue with hydroxyurea use in thal patients. The dosage is quite low in comparison to what is used in chemotherapy.

The excerpt below is from a presentation that was made at the Cyprus conference in November. If you go to this page on the TIF site and click on Other Approaches to Clinical Management of Thalassaemia – M.D. Cappellini, you can see the whole presentation. There are many great articles that can be accessed through this page.

From http://www.thalassaemia.org.cy/Medical_Focus.htm#10th_International_Course_on_Clinical_Management_of_Thalassaemia

Quote
Hydroxyurea:
–No toxicity at maximal dose (8-12 mg/kg/day).
–Stopfacial changesduring therapy.
–An increase in energy, exercise toleranceand feeling of well-being.
–No change in splenic size, but even decrease in the size of the spleen.
–Completely and rapidly transfusion-freeafter treatment.
–Good responsein 91.4%of the study subjects followed up for 7 years.
KarimiM, YavarianM. J PediatrHematol2006 TaherA, Sheikh MT. J PediatrHematolOncol.2006
Fetal Hbinduction

I think you should keep giving the natural supplements along with any other meds you decide to use. If you are going to the Egyptian conference I hope you can check out this particular presentation:
Plant Extracts and Fetal Hb Production (R. Gambari, Italy)
It sounds like it could be very enlightening.
Title: Re: Fever
Post by: Zaini on May 01, 2007, 06:14:47 PM: I am sorry manal you are going through all this,,,but i think hydrea is a good option, though i haven't used it on my daughter,, but i have seen even thal major patients using hydrea and with positive results,i think u may start hydrea or his low hb would sooner or later start effecting his bones (GOD forbid )as it's too low for a growing age kid..wish u best of luck with hydrea.

ZAINI.
Title: Re: Fever
Post by: jzd24 on May 05, 2007, 03:21:07 AM: Manal, I wish I had information for you, but I don't know anything about hydroxyurea. I know you will do the very best for your son. He is lucky to have such a caring mother. I wish you strength in dealing with all the issues. Love, Jean
Title: Re: Fever
Post by: Manal on May 05, 2007, 12:03:22 PM: Thanks a lot Andy, Zaini and Jean for your support :hugfriend :hugfriend :hugfriend
I really appreciate it so much.

Ahmad has been taking it for 4 days now. The doctor told me to disolve the capsule in 5ml water and then give him 4ml only . The capsule is 500mg and Ahmad weighs 16 kg. i usually give it to him after lunch to avoid any gastric discomfort. In those 4 days, Ahmad started to feel pain in his stomach after one hour and this pain increases gradually, he becomes very sleepy (maybe like nauseia or dizziness) he really cannot explain his feeling. The most awful thing is that he cannot eat any thing at all even a candy (which is the world for him). For the last four days he didn't eat anything after 3p.m. and i guess if we continue like this he will be losing weight. Some times he sweats a lot even he is not hot( like he is going down). I know that this are expected side effects from hydrea.

my question is: Does this mean that his body cannot tolerate the medicine so we should stop it OR the dose should be decreased OR i Should give it to him before he sleeps so all this side effect happenes during his sleep. But i am afraid from this last option cause i don't know what may happen during this time( maybe his blood preasure will decrease or.... i mean i am not mointering him and can not mointer him if any thing happened)

Have any body got any idea what to do ??????????????

Thanks a lot
Manal
Title: Re: Fever
Post by: §ãJ¡Ð ساجد on May 05, 2007, 03:46:50 PM: Hi Manal,

Better tell his doctors about it and ask for what measures to undertake if something happens to him if the reactions get severe.

Hoping that everything will be fine now and his body starts tolerating it.

Take care, Peace!
Title: Re: Fever
Post by: Zaini on May 05, 2007, 07:01:55 PM: Yes Manal,

Sajid is right , talk to his doctor about that,,it,s may be like body is taking time in adjusting with the med,sometime it happens, and then graduallybody becomes use to it.i think you can ask kathleen ,mom of olivia mary who i believe is taking hydrea,she is lauryn's cousin.You and Ahmed are in my prayers.

ZAINI.
Title: Re: Fever
Post by: Manal on May 05, 2007, 09:59:21 PM: Thanks Sajid and Zaini :hugfriend :hugfriend

I called his doctor and she told me to lower the dose to 3 ml and she agreed to give it to him before he sleeps though i am afraid if anything happened during his sleep. I told her that i will try this for three days and let her know the result. Guess i won't sleep today so i can keep an eye on him while he is sleeping

hope this works

manal
Title: Re: Fever
Post by: KHALIFA on May 05, 2007, 10:16:25 PM: Hi Manal
am so sorry that your son go through all these am sure that tha HBG go down if there is fever and also the iron level also go up spicially with antibody drug ...
i have good idea to you the summer holiday is too close and there is no school almost for three month why u don't go to italy and see Dr paola polchi and let her see your son belive me she is very kind Dr but i want from you to call her or send for her an E-mail to inform her that you are coming to see her and to check your son and if you don't have any body there to guide you to the hospital i can give you a phone number for my friend he can make areservation for you in a hotel for one week and it's near the hospital his name is ABO FARES if you decide to go to italy just tell me i can find his phone number ...
khalifa
state of kuwait
Title: Re: Fever
Post by: Manal on May 15, 2007, 03:55:11 PM: Hi Khalifa

I have just seen your post now by coincidence though i log in the forum at least twice a day :huh :huh. By the way this happened to me many times where there are new posts and i am not notified when i check the replies.

Any way, thanks for your reply. I think what you said is an excellent idea. Actually i thought of it two months ago and i emailed doctor Paola with all the information about Ahmad, even his pictures and i asked her if i should pay her a visit or not, but unfortunatly i didn't receive an answer. Of course i know that she is a very busy person, but that what happened.

As of now Khalifa, i don't know what i will do. I am investigating the procedure of the retodifferntation so either to go for it or not. Also i am waiting to see if the hydroxyurea made any difference or not. But to tell you the truth, i think that paying a visit to Italy will be a good thing to do. If i was able to go there,definetly i will need the assistance of your friend as i know nothing there. Thanks a lot Khalifa for your help. I really appreciate it and sorry for this late reply.

Manal