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hi..I am a parent of an 8 year old girl who was diagnosed with ALPS at the age of 2...I have yet to meet or speak with other parents who have a child/children with this disease. Hoping to conect with someone to share stories and give support...please contact me...
hi my name is kim i have a 11 year old boy who was diegnosed with it at 4 but has had it sence infency.he had had his spleen out and had an inlarged liver.in august of last year he had a bonemarrow transplant.we see dr rhao(sp?)and his team and they are great.if you ever need to talk message me.
kim
hi Kim..I would love to speak with you..I am in NY..,I hope your son is doing well...what type of ALPS does he have?...we just recently received a name for her ALPS-she was in the ALPS type 3 b/c no mutation was found-as of 2 weeks ago they found her problem which is just in her T-cells-they call it somatic ALPS. She still has her spleen (which as u are aware is very large) she also has an enlarged liver...we just started her on an experimental medication-which thank god-seems to be helping! We also see Dr. Rao for some follow-up-we also have a great doctor at NYU in NYC. Life is always crazy when she has problems but we manage-hope to hear from u soon...Laura
My son was diagnosed @ 2. He is now 3, and nothing seems to be working yet. He has been on various doses of steroids, IVIG, rituxomab, vincristine, and cellcept. What is the experimental drug you guys have been trying?? His platelet counts went up to 25,000 about a month ago. They have been going down since then, only 3,000 last week. He has a sibling bone marrow match, however, the baby also has the gene mutation. So, they are prolonging transplant as long as possible. Any ideas??
Hi..I am the mother of 2 girls (11yrs & a 5month old).
My youngest daughter was diagnosed with alps type 1a after a long time in the hospital in isolation because she was neutropenic ,2 transfusions,a lymphnode biopsy,a bonemarrowbiopsy
They have put her on prednisolone and it slowly seems to bring her counts up,but I still can't take her out in large public. I am so glad that there are other parents here I can talk to. It is hard sometimes and iIwent through a period of guilt because it is genetic.
which I didn't know since my oldest is fine.
what am I looking at here in the long run and how do I give my oldest one equal attention? I need to talk to someone
I am curious on why don't they want to take the spleen out?This is not a solution or a suggestion just curious , my daughter is also diagnosed and they want to wait till she is 2 or 3 to do this.
hi it was so nice to hear from u..my daughter is on cellecept and receives monthly ivig transfusions at NYU hospiatl in NYC...she isdoing much better then whenshe was young...she had her ups/downs...was also on predisone for a long period of time...as she gets older..she seems to do better but seems to develop bizzare illnesses..she has symstic Alps which is not genetic...spontanous mutation...honestly it has been difficult but lucky to have a great doctor! Please contact me whenever you want..especially to talk..i remember those beginning days and how alone i felt
i believe the reasoning is that it does not always cure the illness and then you have a spleen missing(which u are at risk for septis..NIH is experimenting in a spleen reducing drug! Also spleen removal usual does not occur until 6-7 years of age because of the high risk of infection in babies! Hope this helped u in some way! Laura
Well I am here in North Louisiana and have a fantastic team of docters,but they are admitting that they are grasping at straws here.They went to a conference at NIH to learn more and discuss treatment.
My daughters spleen was pushing on her kidney,but now seems to shrink slightly.Did your daughter outgrew her large spleen some or did it stay the same? Also how is it affecting your family life and what precautions do you have to take still with her if any.
We have a 14 year old daughter just diagnosed with ALPS. She is mostly asymptomatic except for the lymphoproliferation. Her spleen is massive. She is begin started on Cellcept this week to try to shrink it.
In addition to the fact that it doesn't cure the disorder and leaves the patient at a immunity deficit, my understanding is the spleen "protects" the liver. Without it, the liver takes the brunt of the lymphoproliferation.
Hi fellow Alps Parents...I wasn't under the understanding that cellcept shrinks the spleen..for my daughter it has kept the blood counts up higher...NIH has another experimental drug they r trying to rduce the spleen...My daughter's spleen is massive too! But she has been ok so far...it seems to be the same size since she was younger....great to hear from others dealing with this crazy disease!
I think Cellcept stops the auto-immune process, so if your daughter's body is attacking her blood, then maybe cellcept would help slow that process down? My daughter does not have that issue, her blood levels are relatively normal, she just has the big spleen. She is very lucky, I think. What I understand is that ALPS patients have B cells that make a mistake and make antibodies against platelets, red blood cells or other cells. So, the antibodies become stuck to platelets and red blood cells which then get stuck in the spleen which has to work harder to filter them
and that causes it to get bigger. Cellcept stops the antibody making so that should shrink the spleen. That's what they're telling us. We see Dr. Bleesing at Cincinnati Childrens. I do know they are trying Sirolimus for spleen shrinking, but currently they recommend it only if cellcept doesn't work. I have also heard experimenting with anti-malarial drugs. Are there others they experimenting with? Does anyone know the names?
hi thanks for replying -it is always great to hear from others with ALPS! We tried an antimalarial drug about 6 years ago (did not work at all) Cellecept has not helped shrink the spleen just helped with my daughters blood counts. Do u go to NIH? Is your daughter small in statua?? Any other news is always helpful to Alps parents!
Well that is disappointing news about the spleen. Did you say in an earlier post that you were on something that was working well for her?
We don't go to NIH - we see doctors here in Chicago, but we consult with Dr. Bleesing at Cincinnati Children's. A lot of our lab results have come from NIH, though, so her blood has been there! She is tiny, but not unusually, we have smaller women in both sides of our families. Is your daughther? Like I said earlier, she is mostly asymptomatic. We had a different diagnosis for most of her life, but they changed it to ALPS last fall, so we have been researching like crazy. She just gave blood for the S/M test because she is currently Type3.
My daughter is starting cellcept tomorrow. Does anyone have a child on this medication? If so, can you share with me any side effects they have experienced?
my daughter is on cellcept..i have not seen any side effects...she is doing great on it! She is about 55 ponds and taking 1000 mg...what will your daughter take??? good luck!!!
I am so happy to hear that! My daughter is nervous about nausea and vomitting. She is 90 pounds and is starting on 600mg and then we'll move up, I guess. Does your daughter take it 3 times a day? So that's really a total of 1800 mg/day. Yikes! Seems like a lot!!It'll be interesting to see if it actually works to shrink her spleen.
hi again..my daughter takes 500mg x2 day...she was never sick at all...like i stated prior it has not worked on her spleen but brought her counts up...i will let u know as soon as she starts the new drug for spleen reduction...i do not know the name yet...i will be in touch..i hope u will keep me posted on your daughter..good luck and be strong! Laura
i just remembered the name of the antimalarial drug she was on years ago..Fansidar..it did not do anything for my daughter so we stoped it years ago!
Is the new drug for spleen reduction part of a trial? Or experimental? I would love to know the name when you find out. Thanks for getting back to me so quickly about the cellcept and your advice.
Jane
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