Opinions needed please????

Well, long story short. My daughter was diagnosed with acute itp 2 years ago with platelets of 5,000. One dose of winrho(nasty stuff):sick: adn normal counts for a year. Then her platelets started dropping slowly. She ahs had one more winrho and an ivig. Thank goodness for ivig. She handles it very well. Anyway, heres my problem. I have asked for over a year to have her vitamins checked. Finally changed hematologists who had her pediatrician check and here is what the results were. Her viatmin d was low at 25. Her doctor says she isnt happy with the reference ranges in the u.s for vitamin d. She said she wants it at least 50. Her ferretin was 11. I guess according to some reference ranges it is low or normal. But still normal low. So that needs some work also. Then her vitamin b12 was within normal ranges for the u.s but again the doc says that her level of 423 is not good and it needs to be at least 500-550. Her folic acid was 21.8 and I am wondering if that is too high. I guess my question is is does anyone know if these test results could be contributing to the itp. I have read so much about vitamin d causing autoimmune problems and I am wondering can fixing the defiency fix itp? Also, her bone marrow two years ago was mildly hypocellular but she was sick with a fever. There were also no iron stores in the bone chunk biopsy. Does anyone know if there is supposed to be iron stores. There were in the aspirate but not the actual bone? Thank you so much in advance for any opinions.

Well, I can tell you that a lot of us here seem to have low Vitamin levels. The doctor is right about those reference ranges. I've been in the exact same situation with D, ferritin and B-12. It's taken me three high dose scripts to get my D to 34. We're still working on that. The ferritin and B-12 were easier. Getting those levels up can make a huge difference in how a person feels.

As for whether or not it can raise platelets, my immediate thought is 'no'. I haven't read much in any research that indicates that Vitamin levels play a big role in ITP. However, since every one of us seems to have different responses to treatments, you never know what might make a difference. In any event, getting those levels up will help her in other ways, so good for you for having that checked!

Oh - ferritin = iron stores.

Thank you for the quick response. They dint give me any scripts. Just said to increase with a vitamin d supplement. Emma is 5 almost 6 so I am giving her 800iu of d and making her drink milk because the D wont work without calcium. And we are going out in the sun everyday. The doctor said that a low D level can cause autoimmune so they are hoping that fixing the deficiency will help the itp. I am hoping. She explained that the t-cells have a D on them and need it to mature correctly. I hope I explained it right. Anyways, as for the other vitamins, I am having her eat healthy cereal. Not the colorful stuff. lol. Im wondering how much D I should give her adn how long it should take to get her back up to where she needs to be. Should the core of the bone biopsy ahve iron stores? I would think so since they said there weren't any. I think I could be a pathologist by now. hehe.. I spoke with a lady who had itp. Tried everything. even a splenectomy. And everything worked briefly but after she relapsed her doc found her folic acid low and ever since bringing that up her itp is gone.Very strange thing this itp. Im sure it will end up going away soemday. Most chronic in children does. She has no other autoimmune illness either so were just waiting. We only treat when she is sick because her counts stay in the 50's and have been in the 60's recently. But with an illness they crash. Thank you again.

Well, there are differing opinions regarding Vitamin D. Recent research states that increasing Vitamin D may exacerbate autoimmune disorders.

www.sciencedaily.com/releases/2009/04/090408164415.htm

Honestly, I'm not sure what to believe. Since I've been on steroids for the past 6 years, I am doing what I can to protect my bones. Also, I had severe muscle loss due to low Vitamin D, so I had to get the levels up. Prior to finding out about my low levels, I had been supplementing with 800 IU's a day for over a year. It didn't do anything. I hope it works for your daughter.

As for the sun, I'm going to tell you what I tell all parents of ITP children. ITP can be a first symptom of Lupus. I am not saying that your daughter will ever develop Lupus, but sun exposure is known to trigger it if a person is predisposed. Just take it easy out there and don't let her burn. Too much sun isn't good either.

I don't know much about what the bone marrow biopsy should show as far as iron stores. I would think that if her ferritin levels are low, the iron stores in her bone marrow would also be low. Did the doctor advise you to give her iron?

They didnt say to give her iron. They have made jokes adn hand me the results and kinda just say you'll take care of it. lol.. They know I know better. Im very careful in the sun with her. She is very light anyway. Its been 2 years since this started. They have tested her ana, dsdna, c3 and c4. All were fine. her c4 was a little low once but is now normal. They have also checked her crp and for arthritis and so far clear. The rheumatologist told me that if it started 2 years ago that definately something would have showed up on her tests by now if she were to have lupus. That I have no clue about but I trust them. I wanted to tell you about the new thought that vitamin d exacerbates autoimmune diseases is from a man with an illness in which vitamin d is actually bad for. For some reason if they have witamin d their kidneys cant process the hormone and things go crazy. Dont let that worry you. Your doing the right thing with the vitamin D. But, there are articles from doctors saying that the man who is against vitamin D should be, but it doesnt pertain to other autoimmune diseases. I've even started taking it now because it seems like a wonderful vitamin. There are so many sites about how good it is for you, but only one man with this idea that it's not. oh, her immunoglobulins have also been checked and they are good too. The doc said that usually someone with a true autoimmune disease will have igg or iga off a little bit? Again, not sure about that either. Were you on the d2 or d3? My grandpa was a pharmacist and said use only d3. He said it absorbs much better. I think I may give her more though. I just dont know when to get her re-tested. Can't steroids lower your D level also?

D2 is not a well absorb vit. D. My D level was 19 and it took 10,000iu's a day of D3 for a year to get it to normal. So I would not expect 800iu's to do much of anything for your DD. You probably should look at either 2000 or 5000. Before that scares you, my son had basically normal D levels at 45 and we put him on 5000ius of D3. When we checked him 6 months later his D was only 74. Which was actually perfect as far as our naturopath was concerned. So you might need to up her iu's a bit and you shouldn't be afraid to. You should recheck it in 2-3 months to see if you're making any headway at all.

You can have her take a cell salt call Ferrum Phos (cell salt #4) that is a great blood/iron balancer. Hylands is one brand of cell salts. They actually have the #4 on the front of it. They melt in the mouth (much like the teething tablets do) and are very easy to take. This would very likely work out her iron issues in time.

The next best thing to do for vitamins is to make her diet as whole as possible. Cereal is highly processed (even "healthy" ones). The closer she eats foods to how they were grown, the better she will be with vitamin issues. So rather then processed cereals you could do whole oats, or cooked wheat, kamut, lots of things like that. Eggs, homemade pancakes, etc. would all be whole foods and loaded with natural vitamins.

I'm taking 50,000 IU's of D3, once a week.

Not true that Lupus or another autoimmune disorder would have shown up by now. I was diagnosed with ITP and Lupus didn't show up until 8 years later. All of my screening tests prior to that were normal too. I've seen it happen with others. All it takes is the right trigger.

I'm surprised the doctors don't want to deal with her other low levels. I'd check with them first though for doses if you want to supplement. My doctors said my low ferritin was okay too because it didn't affect my red cells, but I had symptoms that I didn't even know were related until I started to supplement and they went away.