my son is 16 months we finf out when was 7 months I am just try to find other parents.
Lisa
HI Lisa
My son is 5 and a half an was diagnosed in October. Fun process hey!!
Anna
yeah its so crazy
I have a question had did you find out he was sick and what test had he had done my son had a lot but they dont know how he got it.
any input would be great still trying to understand it all
Lisa
We had no idea. A friend of ours who is a doctor happened to notice, at a bbq, that he was a bit yellow!!! We took him to our doctor and got some blood tests which showed his haemoglobin was at 67 (should be above 120). Straight to casualty. Lots more blood and tests but within 4 hours had an answer. In hospital for a week and treated first with really really high steroids which we are slowly reducing. We are just at at the stage that next week we will find out if the antibody is still there or not, his nearish future will be determined then. Absolutely no idea how it happened. They say maybe a virus triggered an immune response but I think we will never know… We will also never know if it will recur, we still don’t know if its chronic.
My Daughter was dx Oct of 2007. It has been a crazy struggle and not so nice battle. Finally after a trip to John Hopkins and a course of Rutixan treatments in the Summer of 2008 she was able to finally come off of her steriods and numberous other meds Christmas of 2008. She is stable and on no meds…finally Cross our fingers. The Rutixan treatments have ran their course and the next few months will be the deciding factor for her next course of treatment or her remission. She was also “weakly” positive for Lupus this past summer. We must redo those tests as well. Normally Immune Disorders do appear alone. She has been very sick and is now just starting to venture back into school and such. Listening to an adults story will really open your eyes to how serious it is and just how horrible you feel. If you have any more questions please feel free to ask. The more stories you read the more it will help you!
yes same with my son he was 7 months he was never sick but he was yellow and we took him to ER and the took him awawy from right away he had test done had jaudice and hes hb was 7 then 5then 4 he was in PICU blood tranfusion for about 5 hours then he got moved up to another room another tranfusion done then he went home for only 24 hours if that he got a temp went back to ER hb was back down to 6 another tranfusion done was there for another 4 days they could not get him stabe so they gave a ivg to him he did good after that and got to go home he was steriods then we got off them slow so then then been do monthly blood work they did direct coombs three time it still postive so but they think the same thing here a virus and we will never know but it and and most likley we happen again just dont know when. but I am very blessed we got thur it and still praying for him but I really.
sorry so long but I really dont have anyone to talk to about this and know what I talk about I do have a great family and they have been there for us . thanks for reading my post
LISA
It must have been awful to go through the whole transfusion thing. How scary for you. How have the steroids effected him? What is an ivg?
Would anyone be able to state their children’s reactions to steroids?
First of all, my prayers go out to all the families dealing with the sickness, I know the ups and downs first hand, waiting week to week for the blood results. I have a 5 year old niece who was diagnosised January 08 with AIHA. She was in the hospital with pneumonia the previous October and never really bounced back, then in Jan, my sister noticed her being pale and not her self and took her to the doc. After being sent home twice saying she just had a virus, my sister took her to the ER two days later and she was flown out with a Hemoglobin of 3. She had a transfusion and was on steroids for about 6 months. (what an awful drug). But she was doing well until almost exactly a year this January 09, Her blood work started to go the other way and she ended up back in the hospital over new years and had another transfusion and IVIG treatment and of course back on steroids. She was home after a week and is doing good again, except for the weight gain and moods.
My sister after going through all of her blood work is thinking she is having a reaction on antibiotics (sulfa form) The was on the antibiotic the first time this happened, then in the middle of her last fight when she was still on the steroids she developed a Urinary Tract infection and they put her on Bactrim and her blood work went crazy that time, but she was still on the steroids. And right before Christmas this year she was put on Bactrim for another UTI and this happened again. So needless to say no more sulfa drugs for her. Just wondering if your children were on any kind of drugs/antibiotics at the time. the docter said this may be the case but does not seemed confinced, but Of course we hope and pray that this is the case. Cause that would be an answer!
Bensul,
sorry I missed the right name for the last transfusion name was IVIG
yeah he did well on them I also didt like all the blood work weekly but we got thur it.
My niece is about the same with the steroids. Mood swings and weight gain. The first time she was on a high dose and complained about being hungry all the time and she put on 30lbs but this past time she doesnt seem as bad and they seem to be reducing her faster so hopefully it does not get to that extreme.
csryen
my prayer go out for your family
Lisa
My daughter has had several UTI’s during her dx of AIHA.=A0 Not that she ha=
d ever been really stable since her dx in Nov 07 but=A0in May of 2008 she r=
elapsed bad and we were sure she had a UTI at the same time!!=A0 She wasn’t=
on any sulfa meds though!!=A0 Hummm…
Jessica Vanlandingham=A0=A0=20
— On Thu, 2/19/09, csryen aha-fft-11667@lists.fireflyhealth.org wrote:
From: csryen aha-fft-11667@lists.fireflyhealth.org
Subject: Re: [aha] anyone have a child with autoimmune hemolytic anemia
To: landjfamily5@yahoo.com
Date: Thursday, February 19, 2009, 7:59 AM
My daughter had extreme mood swings, depression, anxiety, not to mention, n=
ight sweats and her 80 lb weight gain!!=A0 She was on steriods for 14mths.=
=A0 She has had bowel issues as far as extreme constipation and being impac=
ted.=A0 Sometimes it was hard to differentiate between the actual disease a=
nd the nasty meds she was on…She wasn’t able to say, if she felt “differe=
nt or sick” specifically after she took her meds, but she took medicine eve=
ry 4 hours so it was hard to make that determination.
Jessica Vanlandingham=A0=A0=20
— On Thu, 2/19/09, bensul aha-fft-11667@lists.fireflyhealth.org wrote:
From: bensul aha-fft-11667@lists.fireflyhealth.org
Subject: Re: [aha] anyone have a child with autoimmune hemolytic anemia
To: landjfamily5@yahoo.com
Date: Thursday, February 19, 2009, 9:23 PM
My son has extreme mood swings, especially when out of his comfort zone. I recommend NEVER holidaying with a child on pred. It is really dificult to figure out what is behavioural and what is chemical with his behaviour.