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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 Alps parents ,
I am so glad that I have finally a place to go to get some answeres and ideas from other parents.
Had a scare last month! My daughters brain started swelling And all tests came back negative, they put her on massive stress steroids doses and every antibiotic under the sun. They never could figure out what caused this.Has this ever happened to one of you?
Also the prednisone is really slowing down her growth and they suggested maybe hormone therapy,but I am just not sure on what to do.Thank god she is going to be 1 years old next month!! but she looks like a 5 month old.Next month they want to talk to us about her one year shots,The ones containing live viruses to let us decide and advice us if we want to give them to her. What have you parents decided on theses shots and this new swine flu vaccine
My daughter has been on cellcept for 8 weeks. She was on 1500 mg/day but found it made her very anxious and even a little depressed. She tapered back to 1000mg/day and is feeling great. Not too many side effects so far other than the emotional ones. Her spleen is shrinking. It's an inch smaller when measured around on the outside and when the doctor measures from rib down, it's 1 cm smaller. However, most obviously, her "outy" belly button is now an "inny"! We are very excited with the progress in such a short time. We have high hopes for more shrinking!
Hi there ALPS parents! We are new to this diagnosis. In fact we have just had blood drawn this am and sent to Cincinati for the genetic test to be done. Our Daughter's haem/oc doc here in Ontario, Canada in conjunction with Dr. Rau at NIH is certain (98%) this is what she has. She has had health problems since she was about 5 months old. It has been a rocky road so far. After a very serious critical acute illness stage in May and June they have come up with this diagnosis. Even without the confirmed diagnosis she was started on high dose Prednisone as a managing treatment. As we are just starting down the ALPS path I would welcome the histories of some of your children, their successes with certain meds, and any info you could provide from your own experiences. Mira will be 4 on July 13th, she has an enormous spleen, and has at least since she was a baby. Her liver is enlarged as well. She has transfusion dependent anemia and receives Packed red cells about every 2 weeks. She has had constant and chronic lung disease, with periods of wellness. Most recently she had a strep pnuemo infection that cause septic shock, nearly lost her. We went home for a week and then came back in because of severe pain in her abdomen and back. Her Reds and platelets had bottomed out and after a CT scan it was discovered that she had bled inside her liver possible several times over an unknown period. She has never had normal platelets but only recently has she needed transfusions for them. She has constant bowel and tummy issues, and has had a distended belly for her whole life. Listing as much as I can in order to possibly draw some parellels to some of your kids. I would love to hear from any and all of you. From what we know,I gather we are not a large group. I am reading info on different drugs that some of you are currently trying and would love to get your take on them. Thanks. Krista (MirasMom)
Laura,
How did you appointment go yesterday? Will you be starting that new drug to shrink your daughter's spleen?
Jane
Hi Jane..I am going to find out more info on the 18th of June...I will keep u posted! Laura
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
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!
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 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.
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!!!
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?
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.
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!
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 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!
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.
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.
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.
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
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
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