Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Canadian_Family on February 15, 2009, 10:39:07 PM
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Hi all,
Not sure if this is related to Exjade or something else. My daughter has been experiencing severe cases of nausea and vomiting since November 2008. As you all know she was admitted in hospital for five days in November due to de-hydration caused by vomiting. Since then she gets this nausea and vomiting attacks every now and then. Her blood results are fine, x-rays shows no signs of stomach problems. Doctors have no idea why she gets these.
Initially we thought it was exjade causing this, but we were told by doctors that exjade has only nausea and vomiting for first few months and this does not look like exjade problem, since she is on it for one year. She does not eat or drink when she gets these attacks (usually for two days), anything we give her she vomits. She has lost almost 4 lbs since November. Its roughly two or three times a month she gets these attacks.
We do give her Gravol for Nausea, but the problem is she does not eat anything.
It would be helpful is you can guess what it might be........
My wife just raised a possibility that this may be due to the flu shot she had in November, my wife is a "Echocardiographer" and she had discussed this situation in the clinic she works. Now the explanation she was given that sometimes the flu shot can cause long episodes of flu symptoms for months until the body immune itself from flu. We had give my daughter, one flu shot in November but never had a chance to give her the booster shot.
Ideas......
Thanks
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I have emailed a woman I know who recently stopped Exjade and began Ferriprox because of nausea problems. I will let you know what she has to say from her experience once she replies.
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Thanks Andy, waiting for the reply....
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Canadian family, make sure that there are no gall stones too
manal
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Hi Canadian Family,
I am sorry to hear about our princess's situation,i don't know if this nausea is exjade related,but i want to share a home remedy which we use for nausea and vomiting,if she can take it.
We boil a spoon of Cumin seeds and a spoon of sugar in a glass of water,and give to the patient a couple of spoons every 2 to 3 hours.
Hope she'll like it,kids love it here.
Lots of kisses for our little princess :hugfriend.
Zaini.
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Hi Canadian Family ,
i m sorry to hear about wat your daughter going through ,.
Canadian family, make sure that there are no gall stones too
manal
i 2nd wat Manal Said .... i dont know its related to the topic or not , but my doctor told me that there could be 1 of these 2 reasons of severe stomach aches and vomiting ...
1) Gallstones
2) Liver
she sent me for USG to check if there is any gallblader stone , but Thanx God there is no gallbladder stones ... soo i think you could investigate on both reasons ...
please check this article ...
http://www.essortment.com/all/gallstonessymp_rcrj.htm
May God bless her with best of the and fast recovery .....
Best Regards
Take Care
Umair
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Canadian Family,
I am sorry to hear that your little one is still experiencing stomach related problems. Stomach problems can persist for a long time. Once aggravated, the stomach can continue to be easily irrated for a long time. During the first few weeks this can be due to swollen glands in the abdomen and later it can be due to the change of flora in the digestive system. After a stomach illness reflux and gag reflex may also cause indigestion and vomiting.
Because your daughter had such severe stomach issues, her stomach may feel delicate for a prolonged period of time due to a combination of many factors. Additionally, you have changed her diet and supplementation because to promote bone health - and her stomach will need to deal with these changes as well. As Manal said, checking for gallstones may be a good idea as well.
A few strategies that I would suggest are - small frequent meals (not allowing the stomach to be empty for more than 2 hours) - but now allowing it to be too full either. Eating probiotic yogurts and cheeses. As per the docs in Oakland, Exjade can be broken into two doses to be taken twice on an empty stomach. Frequent warm drinks can soothe the stomach and upper digestive system (reducing reflux). Raising the head of the bed a few inches and avoiding food a couple of hours before bed will help a great deal too. I also think that the fennel is a great idea (however the refined sugar we have in North America may further irritate the stomach so honey may work better). Throughout the day you can offer her 1/2 cup of green tea, black tea and fennel water - this will also provide antixidant support.
I hope that these ideas help,
Best of luck to the little princess,
Sharmin
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I have had it too. I really believe that I did not had flu, but only side effects.
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I think that the others has given enough tips. When I was in that annoying period (6weeks) I dropped my own created dieat. So i did eat some red meat and lots of vit c.
I have no idea of it could be gallstones since my galbladder was removed in 1992.
I am sorry for this empty message,
Dore
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CF,
I am still waiting to hear back from my email, but I learned the person I emailed is going on a trip so it may be a delay in response.
Meanwhile, I would suggest either splitting the dose into two, morning and evening, or switching to evenings as Ambareen did. It did help her manage the nausea much better by taking it at night.
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dear cf
in our hospital there is an lady
who told me the same like u.
she take exjade and have all the symptoms like ur liitlle.....
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i was told that splitting the dose in two does not alter efficacy and it may prevent stomach issues.
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Little Z also takes exjade in evening.
Zaini.
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Hello all,
Thank you all for your valuable input. We have started the exjade in the evening at around 5:00pm i.e. between the snack and dinner time (Thanks Andy). However, the idea to split the dose is fantastic and if the change in timing does not work than we will go for it.
Andy,
Thank you for the update. The idea of splitting the dose is great.
Zaini,
The cumin idea is great, we will implement it immediately if the condition persists...
Dore and Manal,
Thanks for your message and ideas.
Sharmin,
Great tip on frequent small meals. She does puts her hand on the lower abdomen on her urinary bladder and complain about tummy hurt. I don't think its gallstones as my wife knows about it in her field.
Nice friend,
We did thought about liver problems as well, but her blood results came fine just few days ago. We are quite certain its not gallstones as the tummy aches is nothing like it and its the wrong place for gallstones, but we can pass this to our doctors upon our next visit.
Well, the good news is that she has started eating again today (small frequent meals) and today is the first day we changed the timing of exjade dose.
Oh by the way, since we have nick name for all the children, lets call her little A.....
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I think you would probably be seeing high bilirubin levels if it was gallstones. Considering her age, I think liver and gallbladder problems are unlikely.
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Hi Canadian Family,
I am glad to hear that Little A has started taking her meals again,Sharmin's tip about small frequent meals is great,i am sure it will work ,Lots of kisses for Little A :hugfriend .
Zaini.
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Owh, I forgot to tell you. but my tummy hurted for years. We talk about the years between 10 and 17 year. I have had even strange painkillers which I refused to take, because docs did not take me serious. It might be even earlier, but I have suppress some details of my journey.
Good luck Little Miss A !!!!
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i was on painkillers for a long time , when i was on wheel chair .. i stopped to take painkillers bcoze of stomach , using painkillers for couple of years developed ulceer soewhere in my abdomin ... i gues it was in intestine , my doc prescripted me Zantac at that time .. i mentioned this all bcoze i wana say that i was feeling that ulcer pain on my lower left side of my tummy ... and here is something from topic " exjade label change "
http://www.thalassemiapatientsandfriends.com/index.php?topic=2582.0;highlight=exjade+label
Abdominal pain occurs with many medications and can be a side effect in many patients on Exjade. Clues of gastritis (irritation of the stomach) or ulcer (a hole in the inner lining of the stomach or small intestine) include a dull, gnawing or burning pain in the upper mid- or upper left abdomen, relieved by eating or by antacids (Tums, prilosec, Zantac, etc). Clues to a bleeding ulcer might also include vomiting red blood or dark brown “coffee grounds”, and black tarry stools or blood in the stool. Light-headedness, pallor or fainting with severe abdominal pain should lead to immediate emergency evaluation.
A common cause of ulcers without medications is a bacterial infection called “H Pylori”. Contrary to old medical beliefs, spicy foods don’t cause ulcers. Medications well known to cause ulcers, including risk of serious bleeding, include prednisone and other steroids, nonsteroidal anti-inflammatory drugs.,e.g. ibuprofen (advil, Motrin), naproxen (Aleve), asprin. Fosamax and other bisphosphonates are severely irritating to stomach and esophagus. Stress, cigarette smoking and alcohol consumption all increase the risk of gastritis and ulcers. Blood thinners (warfarin, lovenox, etc) raise the risk of serious bleeding if an ulcer does occur.
Praying for her good healt , may God bless her with the best of the health in soon future ....
Best Regards
Take Care
Umair
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Canadian Family,
I do suspect that your daughter's stomach related issues are an aftermath of the stomach related illness she had in the fall rather than exjade itself. However, once her stomach was irritated exjade may play a role in continuing to upset her stomach and for that reason it may help you to divide her dose into two doses.
I still think that raising her bed and giving her frequent small meals with also help in the long run because there may be an element of acid reflux existing due to her earlier illness. (Does she clear her throat often?). I think that with the various ideas everyone has listed here, that her stomach will continue to settle and her digestion will improve.
My son's stomach was upset when he was given his first dose of IVIG - he had a strong reaction to it resulting in headaches and severe nausea (early July 2008). He was unable to eat for days and he would vomit even if we gave him water. It took several weeks for his stomach to return to normal. It took months for his apetite to completely return to normal and I he would get queasy quite quickly even months after this episode. We began exjade several weeks after this reaction - and I wonder if the exjade possibly added to the whole equation.
Over time things did settle and he seems to be eating and drinking like normal now. Studies are being done to see if certain foods can be taken with exjade without altering it's effectiveness. These studies are not yet complete, but once they are it would be nice to be able to give exjade with food.
Best wishes to our little Miss A.
Sharmin (mom of little Mr. A :))
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Sharmin,
I agree with you. We have already alter the timing of exjade dose to the evening, however, splitting the dose has a technical problem. Since little Miss A. is on calcium rich food and supplements, and we know calcium rich food is not good within 3 hours (before and after) with exjade, this leaves us very little timeframe to give her what she needs for her osteoporosis.
The frequent small meals are working fine so far. We did got a call from the Thal Clinic yesterday and the nurse is getting the appointment with GI specialist to investigate further.
Regards
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CF,
I have not heard back from the person I emailed about Exjade. It is very frustrating to me that people who are very active in thal associations can't be bothered to give some advice to help a little girl. Again I wonder if there is any reason at all for me to get involved with thal associations, as they mostly seem to be little cliques that don't give a damn about anyone else. It isn't just frustrating. It's quite disillusioning.
I do hope the adjustments are helping her overcome the nausea.
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Andy,
Thanks for the message. Yes we do understand your concerns and it ticks me off too sometimes. I had send numerous emails to Thalassemia society of Canada (five years ago) with no response from them.
Little Miss A. is doing fine again. She is making an effort to eat more frequent small meals, we are careful not to force her too much as well.
Regards
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Andy,
Before coming to this site I had sent numerous messages to all of the thalassemia societies, telling them how afraid I was of my son's antibody issues. I did not receive any responses, you were the first person to care about him and help us get answers. It makes me wonder what their fancy websites are for ??? ???
Sharmin
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CF,
Thank you for understanding. I often make the mistake of thinking that because someone is involved with a thal association that it means they are concerned about other thals, and far too often this is proven wrong. I think this is a big reason why our group is so popular. We do care and do try to help. The members here deserve a big pat on the back for taking the time to help others. :thumbs
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Andy,
The members here deserve a big pat on the back for taking the time to help others.
You were the one who started this,we are just following in your foot steps :yes .
Zaini.
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Can I make a suggestion!!!!
What is your daughters potassium level?
As everyone else had their say!!! lol
I'd like to as well, since being on all the chelators and the only one I can take is desferal!!!
Now with exjade! As some have said you can take it in the evening on an empty stomach so before her dinner is a great idea, then waiting the half hour...
I did try that too, cause I have an ulcer I couldnt take it in the morning...
They do say the side effects do subside, but i am alittle sceptical...
I had to stop taking exjade cause of the drop in my potassium and the severe diohrrea it caused.. I actually lost alof of weight from it...
Please let me know what the little ones potassium level is?
Thank you...
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Hi Smurfette,
As far as we know, Little Miss A's potassium is normal. I don't remember the number but it was last checked just two weeks ago. She is taking calcium tablets with potassium and other traces of elemnets for bone density so we have no reason to believe she is deficient.
You mentioned diohrrea, she is not having this symptom either. We are waiting for GI appointment to see if there is a problem there.
Thanks....
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Andy,
You were the one who started this,we are just following in your foot steps :yes .
Zaini.
Agree to my heart........
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:exactly
Sharmin
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Canadian Family,
I hope that our princess is doing well. I hope to hear that her stomach issues have been resolved.
Hope to hear from you soon,
Sharmin
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Canadian Family,
How is Little Miss A doing? I was just thinking that you haven't logged on since last few days,i hope everything is fine.
Zaini.
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Hi CF,
I hope Little-Miss-A is doing well and enjoying the life , ... please keep updating us when-ever you have free time ...
@ Sharmin and Zaini ,
yeah, its strange that C.F haven't loged-on since last couple of week .. I hope that everything will be fine at their side ...
Umair
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Hey CF,
I hope your daughter feels better than me. I increased the dosage last friday and I feel pretty, pretty bad at the moment. I do blame Exjade for it although I dont have evidence yet. I hope you will find soon time to let us know how things are at your site.
Take care
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I hope everything is fine with you.
Zaini.
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Hi Guys,
My sincere apologies for being absent without notice. We have just arrived today after two weeks of vacations in Montreal. I had planned to take my laptop and in contact with all of you, but in the midst of packing, planning etc. I completely forgot it.
The hotel had public internet access but I am always shy of using it since it is not private and the data is not safe.
Thank you for remembering us. I will discuss the trip later, it is a fun place to visit. Little Miss A is doing fine and she has gained the four pounds she lost since November 2008. For the next few days I will be reading the new posts and catching up.
Sincere Regards….
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Welcome back Canadian family, i am happy to know that Miss A is doing well and that you have enjoyed your vacation. Waiting for your posts :wink
manal
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Oh Wow!! A vacation,* Drooling* :rotfl :rotfl :rotfl
I am glad you had fun :wink.
Zaini.
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Welcome back Canadian Family,
I hope that you enjoyed your vacation. I love Montreal :) Please give my best to Lil Ms. A :hugfriend
I am so glad that she has gained her weight back.
Sharmin
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Thanks Sharmin, Zaini and Manal,
Montreal is a great place to visit. I especially liked the Notre Dame Church and the historical tour of the city. I am posting some pictures of the church into the gallery (under members photos).
Regards
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Canadian family, the photos are great. The architacture is unbelievable, i used to think that the Notre Dame Church is only in Paris
manal
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Canadian Family,
The pictures are great. I also love this church. In my experience, prayers at this church are always answered.
Manal,
This church is a replica of the Notre Dame Basilica, which is in Paris.
Sharmin
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Wow,Pictures are beautiful. :yes
Zaini.
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Hey, I am glad you had a good vacation. Now I will have a look at your pictures... Adios