New to this group-approaching a year with ITP

Hello Everyone,
My 3.5 year old son was diagnosed May 2009 with ITP. We've been going through the "wait and see" approach without any medication. When he was first diagnosed, his numbers were 47K and they have been on the decline ever since. The "norm" for him is in 19-21K.

Lately, he's been complaining about being tired, so I decided to have his levels checked yesterday and today, the doctor told us that they want him to have a BMA tomorrow morning. His count is at 14K, but his while blood cells are low, his hemoglobin is low and his red blood cells are enlarged. I have been walking in a fog all day.

A few months ago, we sent his DNA to a company called BioTracker to assist us in finding the source of his ITP. We were told that it was brought on my his last immunization he was given. He has provided us with certain vitamins/supplements to help raise his count.

We have been following a more natural and homeopathic method of feeding him with the assistance from natural supplements, such as wheatgrass and alfalfa-just to name a few, as well as, a strict regiment of certain foods that he should avoid. At this point we are considering a Gluten-free diet.

I have been reading what many of you have said about BMA and I am a bit more at ease with the procedure; however, I am very concerned about what this all may mean. I have read and investigated any and everything possible to help my son.

Have any of you ever heard of or experienced a drop in not only platelets, but hemoglobin and blood cell counts? I am interested in anything that you may have to say.

Thank you and I am so glad I found this group.

Juwana
Mother of Gihan (3.5) and Keoni and Kenji (6.5)

Hi Juwana, wish your son the best luck! How did the BMA go? Hope it's a good result.

Hi Juwana, wish your son the best luck! How did the BMA go? Hope it's a good result.

Juwana:

I'm sorry that your son isn't doing well; I'm sure you are very worried. One day at a time...

I did want to tell you about some of the natural supplements that are available - sometimes natural supplements, depending on what they are, can stir things up. I've read this about alfalfa:

“Auto-immune diseases” such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), or other conditions: Alfalfa might cause the immune system to become more active, and this could increase the symptoms of auto-immune diseases. There are two case reports of SLE patients experiencing disease flare after taking alfalfa seed products long-term. If you have an auto-immune condition, it’s best to avoid using alfalfa until more is known.

www.webmd.com/vitamins-supplements/ingredientmono-19-ALFALFA.aspx?activeIngredientId=19&activeIngredientName=ALFALFA&source=2

www.nlm.nih.gov/medlineplus/druginfo/natural/patient-alfalfa.html

My son had a BMA on Wednesday and he did pretty well...I was a mess inside, but he was such a trooper. We were at the hospital all day, hoping we would be able to find out something. His doctor explained to us that his symptoms (abnormal red and white blood cells, low platelets and low hemoglobin levels) were characteristics of 3 different conditions. 1) leukemia, 2) myelodysplastic syndrome or 3) aplastic amenia. Unfortunately, the lab was still processing his bone marrow, so we had to wait another day for the results. We waited all day and about 2:30 pm the doctor called to let us know that he didn't have any of those I already mentioned. So, they are still saying that he has ITP. They are still running test to find out why the other issues are happening, but we are just happy to know it wasn't one of the other conditions.

Also, his platelet counts were 14K on Monday and, as of Wednesday, he's now down to 6K.

Thanks for asking.

Hello Sandi,

I would like to thank for that information on alfalfa. We have discontinued its use. Trying to handle ITP has become an experiment, trial and error, and has called for a lot of research. Some things I have read have been so conflicting.

Thanks again,

Juwana.

You and your son are in our prayers..God Heals! The Moore's

I can't imagine how long those two days might have felt. I'm glad they ruled out those three things. Have they mentioned Evans Syndrome?