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TOPIC: autoimmune lymphoproliferative syndrome

autoimmune lymphoproliferative syndrome 1 year 1 month ago #63059

  • MGrover
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Hi,

I’m hoping someone has some information for me on autoimmune lymphoproliferative syndrome. My 13 year old son has been diagnosed with ALPS and I have searched the internet to find out ANYTHING I can. I’m hoping someone on this forum is in the same boat and can shed some insight on their experience.

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autoimmune lymphoproliferative syndrome 1 year 1 month ago #63061

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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It's not very common and I have not seen anyone here with it lately. I only know of one woman who has the diagnosis and she doesn't come here any more.

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autoimmune lymphoproliferative syndrome 1 year 1 month ago #63064

  • MGrover
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Thanks Sandi

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autoimmune lymphoproliferative syndrome 1 year 5 days ago #63464

  • MuiseFamily6
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I just saw your post and was curious on how things have been. My daughter (she will be 5 next week) was diagnosed with ITP earlier this month (5/2) and while she was in the hospital they tested for ALPS because my husband has 2 autoimmune disorders (one of which is AHA). We found out last week that the test came back positive and are currently waiting on an appointment with the rheumatologist. It has also been recommended that my husband be tested too and possibly our 3 year old daughter.

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autoimmune lymphoproliferative syndrome 1 year 5 days ago #63466

  • MGrover
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Hi there, thanks for your message. Wow so they must be thinking your husband has the gene and may have passéd it down to your children?
We have waited since August 2015 to get a diagnosis of ALPS for My son. It all started with the noticble bruises which I had put down to him being a clumsy active 11 year old. After even strangers were pointing it out we took him for a blood test and then began the long journey to now. The paediatric oncologist/ Haematologist thought originally he had Lymphoma but after various Lymph node removals and bone marrow biopsies that came back abormal but non diagnostic they have been testing other avenues.
He is now 13and we have just recently stated seeing an immunologist who is fantastic. He wants to send DNA to the states to test which type of ALPS he has and to get results quickly which apparently is a long process in Australia?
Jet has had to have two blood transfusions over this whole time which is great. The last one recently when his platelet count was 3 which is the lowest it has been.
No one else in the family has similar symptoms.
Jet has low platelets, low white blood count, enlarged lymph nodes, enlarged spleen, bruises easily. Despite that he is never sick, has never been to the doctors except for vaccinations.
With a low white blood count the doctors are puzzled by his great health. So hoping it stays that way.
He loves motor biking and wakeboarding which against medical advise we still let him do. He has a quick blood test and as long as his platelets are over 50 we let him go for it. He wears lots of protective gear to protect head And spleen ect. He’s a teenage boy and figure he has to live.
He handles everything so well. All the medical procedures he has had and still such a great attitude.
How are you coping and how is your daughter?
Thanks again for your message, it’s great to have the chance to chat with other families

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autoimmune lymphoproliferative syndrome 1 year 3 days ago #63481

  • MuiseFamily6
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That must be scary.
My daughter will be 5 next week and has had one thing after another going on health wise over the past 2 years. About 2 years ago she started having random bruises that we couldn't explain along with a "weird red rash" (now we know it was petechiae) and small nosebleeds. Since each nosebleed never lasted more than a min or two, we never thought anything of it. Since August we have been getting her looked at for seizures and in April she was diagnosed with Complex Partial seizures. At the end of April she had an allergic reaction to a bug bite (she is being tested in 4 weeks for fire ants since she was around those and spiders right before and my husband is allergic to fire ants). Two days later (on Monday) she had 2 nosebleeds that lasted 1-2 hours each. We kept an eye on her and Tuesday morning she was great so she went to school. Tuesday night she got another and it was very heavy so we took her to the ER. Once there, they did lots of tests and scans and admitted her. By the end, she was diagnosed with ITP, got IVIG while in the hospital, changed her seizure medication, and they took blood to test her for ALPS in addition to basic chromosome genetic testing.
They tested for ALPS because my husband has Hashimoto's and AHA. He was diagnosed with AHA in August/September when he ended up in the hospital with a hemo level of 4.3!
My daughter's platelet levels were at 524 a week ago (1 week after being discharged from the hospital) and her hemo was at 9 (she lost a good bit of blood and was at 7.3 when admitted, dropped to 6.4 after IVIG, and was 7.2 when discharged). We are still waiting to get her appointment for the rheumatologist and see the hematologist again next month. They did inform us that although her platelets look great right now, she is at risk of "relapse" because of her history of nosebleeds and bruises plus the ALPS. Because of all this, she is choosing to change her extra curricular activity from gymnastics to dance. She has been asking to dance for a couple of years but we refused because of costs. Now the gym we have been taking her and her older sister to will not let her participate in the group classes because of her health "issues" and said she would only be able to do private lessons (at $120 a month!).
My husband also talked to his hematologist about everything going on with her and he is now ordered CT scans and tests (including ALPS) to see if there is anything else going on other than AHA and to give us more information as far as genetic disorders that my husband may have or be a carrier for.
The only issue we are having with it is that she is at the point she is "over" getting needles. They have a hard time sticking her because her vain will roll on them. While in the hospital they stuck her 4 times trying to put a new IV in her arm when her other stopped working but they finally gave up and gave her a special bear that she now uses to hug when she needs to get needles. She still fights us on it though.

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autoimmune lymphoproliferative syndrome 1 year 3 days ago #63485

  • MGrover
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The poor little thing, it must be so hard for you guys watching her go through all that.
Kids are so resilient though, they seem to handle everything so well and take it all in their stride.
Jet had constant blood noses as well even when his platelets are over 100. The last 6 months he has not had any which his great. Strange when his levels have been really low.
I’m looking forward to getting the DNA results back and seeing what type of ALPS he has.
Finally having an answer is a relief. It’s so frustrating to have to wait so long for the Doctors to get answers. Where are you located? We are in Australia and everything seems to take a long time. Does your other child have any symptoms? Jet has an older brother but he doesn’t.
Thats crazy they want her to have private lessons, I bet the group glasses are the most fun for being with the other kids. Is her school supportive?
Jets in Year 8 in High school and they have been pretty good. He gets pretty tired when his levels are low so they are understanding. I keep them informed if he’s got a low count and they will accomodate with quieter activities. He’s had a little bit of time off school for various hospital stays and tests or when his platelets are too low.
I don’t think he has had low heamaglobin but I will go through all his results and see.
I have spent the last few years researching and it’s so interesting but so confusing. The body really is amazing.

Take care, Melina xxx

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autoimmune lymphoproliferative syndrome 1 year 2 days ago #63495

  • MuiseFamily6
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I actually have 3 other children and other than 1 having autism and the 1 that is also in gymnastics having ADHD, they are overall quite healthy. Thank God! We are in Georgia, USA. It is great that we can get tests back quite fast, at least compared to how long it usually takes to see a specialist. A lot of the time we are able to get the tests done before seeing the specialist so that they have the results by the time we see them for the first time.
Her Pre-school teachers have been amazing! They are taking turns working with her 1 on 1 as her delays make it where she needs the 1 on 1 help and they are always asking how she is doing as far as health and what they can do to help. When she was in the hospital, they checked on her daily. She will be starting Kindergarten in August and I am nervous. She will be going into the public school system and is currently on the list to get tested for assistance but we are also switching school zones this summer so we know very little about the school.

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