ALPS (Autoimmune Lymphoproliferative Syndrome)

I am curious if anyone's type 1 child has ever been diagnosed with ALPS also.

Reese is an unusual case...having been diagnosed with Lymphocyte Predominant Hodgkin's Lymphoma 7 months prior to his Type 1 Diabetes diagnosis and we have a very good study Dr. who believes the linkage may be ALPS (which we will test for in a couple of weeks).

We are probably the only ones with this...but it's worth asking. Thanks.

Heather
http://www.carepages.com/carepages/ReeseEndresen

 

We have not been but you might find some others so you are right to check.
Wishing the best for you.
Allene

 

Heather..... have heard of this, mostly because I've been searching for answers for my youngest. She has type1, and thyroid. She also has a host of other symptoms (headaches, dizziness, numbness and tingling, stomach aches, fatigue) that have caused her to miss days of school every week. She was supposed to go to the endo clinic yesterday, but a stomach virus kept her home. This is one of the things I found in my search. I pray for you and your little Reese everytime I'm on here...

 

How did your child end up getting diagnosed with this. I have not heard of this one. We have spent 10 months trying to find out what is wrong with my daughter besides type I. She has a lot of these symptoms. What kind of test do they do? Thanks,

 

He hasn't been diagnosed with AlPS (yet). After the 2nd diagnosis, I asked everyone of his Drs how the two diseases (Hodgkin's Lymphoma and Type 1) might be connected. Our local docs (endos and oncs) did not know of any connection, but when I asked the head of his cancer study (Dr. Cindy Schwartz at Brown University), she told us that she thinks it could be ALPS.

We told our local docs about her opinion and have requested a blood test called "flow cytometry" that may give us the answer. We will do the test at his next clinic visit in a couple of weeks, so I will post the results when we get them.

Dr. Schwartz believes ALPS may explain why a number of auto-immune diseases may run in some families (including type 1, lupus, rhuematoid arthritis, and even lymphomas). It may be that many of the type 1 kids have ALPS too, but they aren't yet being tested for it because it is a relatively new discovery.

I would ask your Dr. if they are familiar with ALPS...I have learned that the research and observations of the parents can be a HUGE asset to our kids doctors (if they are the types that will listen...and if they are not those types, then you should get new Drs.)

 

Yes, this is interesting to me. Unfortunately I have not found a doctor that wants to look and how everything works together.

 

More ALPS information for anyone who is interested:
http://autoimmunedisease.suite101.com/article.cfm/alps_lymphoproliferative_syndrome

 

Child with Type 1 and ALPS

Was trying to send a message to Reese's mom about her child with the same diseases.

 

Although I am not a child, I have been diagnosed with ALPS.

I was diagnosed T1D at age 6, and may have had ALPS since, but it was not confirmed until age 33. I am now 38.

I have been to the NIH several times, I was one of the first patients diagnosed as an adult with ALPS.

 

I am an adult Type 1, and my 9 year old son is now being worked up for ALPS , he has had chronic ITP (Idiopathic Thrombocytopenia Purpura) since he was 16 months old. He doesn't have diabetes.

 

If you click on Reese mom name up will get a popup and can select private message.

 

Anybody who is looking for ALPS info... here are some tips I have learned with my ALPS journey.

1. Find a Hematologist. They will be in an Oncology area, ALPS is NOT Cancer, just the Cancer docs and blood docs work really closely. Endocrine may not be able to diagnose etc.
2. Make sure that Hematologist is part of a teaching hospital. You need someone that is a DR to do research, not make money. They will discuss with other docs to get consensus and new ideas.
3. Ask that Dr to contact the NIH ALPS team. They can help you know exactly what gene to look at to find if you have the FAS gene mutation that is an ALPS marker.

Common affects from ALPS: Hi Vitamin B in your blood, Low Vitamin D.
- ITP
- Hemolytic Anemia
- Neutropenia
- Enlarged spleen
- Enlarged Lymph nodes

I did not get diagnosed til I had been through all 3 (ITP, Hemolytic Anemia, Neutropenia). My Hematology drs were working with the NIH to get blood and information and things started happening from there.

I am the only patient that the NIH has found that has adult onset ALPS, with diabetes. Traditionally ALPS is a childhood problem that goes away.

PM if you have questions to me. I will do my best to help.

Don Fitzreiter