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TOPIC: My 5 year old

My 5 year old 9 years 2 months ago #16312

  • ecarballo
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My 5 year old was diagnosed with itp a little over 2 moths ago and anyone going through the diagnosis process knows it is a whirl wind of emotions especially when it is your baby instead of you. So far at her known lowest she has only fallen as low 14 it seems each time we have to start the discussion back up about IVIG her body goes into over drive and she increases back up to 18 or 20 so far we havent gone any higher Im skeptical of the timing of her diagnosis now being aware of the signs that she has been struggling with this longer; but being soooo active I never occured to her frequent bruising could be a sign of something much more serious. It wasnt until she received a bruise from a shopping cart the size of my hand on her thigh (now imagine she's five and has chicken legs a bruise the size of my hand is a a scary thing to see on a child this small) that the alarms went off. Despite all this and coming to terms and understanding of this diesease we are now facing a secondary diagnosis of neutropenia. Im confused and conflicted on why her body has turned against it self and feel so helpless in efforts to help her. This past week we hav been finally able to rule out any type of blood cancer which is a MAJOR relief. She is suppose to be starting kindergarten in 3 weeks and am petrified becasue she will no longer be under my 24 hour serveilance. I know there isnt much that can be done with these diagnosis especially at the risk levels she falls in but does anyone know of any type of homepathic methods or foods that can help. I just dont know what else to do...

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Re: My 5 year old 9 years 2 months ago #16317

  • ecarballo
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Another thing is that she is constantly complaining she is cold, she walks around with a sweater all day and sleeps with 2 sets of pj's. Now keep in mind we live in NC and todays high is 103 degrees. I was wondering if anyone else is experiencing this sympton. Her ped. told me it wasnt but Im not convinced.

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Re: My 5 year old 9 years 2 months ago #16346

  • pinkdaisy024
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Hello, I am so sorry you and your child are going through this. My daughter is dealing with it for the second time. She is also 5 and getting ready for kindergarden. (Scary)Anyway, I dont want to sound like a know it all but Vitamin B12, folic acid, or copper deficiency can cause you to feel cold and I have talked with one woman with itp who was deficient in folic acid and fixing that fixed her itp. Then theres my daughter, who I just found out recently was low in vitamin D adn I dont want to speak to soon but since her levels have come up ( Still not normal)it seems her platelets have been much better. She normally has sat in the 50's but drops when she gets sick. She had ivig may 8th and her platelets went up to 400,00 but quickly dropped. She is at 88,000 as of last friday and her vitamin D is 41 instead of 25. Still have to get her up to about 80 in the Vitamin D. I guess what I am trying to say is I would ask the doctor to check the vitamin D, Folic acid and B12. And ask for the actual results because they will tell you it's normal even its the lowest normal. For instance they say 41 for my dayghters vitamin D is normal. Sure, it might be a normal U.S range but it's not a super healthy range. It took me a year to get her doctors to test. I guess I should have been more pushy about it. But, before supplememnting anything I needed to know. I try not to worry, her hematologists are so hopeful that because she is 5 that her itp, although chronic will go away. They said most chronic kids do outgrow it when they are young. But, in the mean time we just be extra careful. I hope I was some help.

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Re: My 5 year old 9 years 2 months ago #16354

  • april
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Hi,

My daughter was 12 when she was diagnosed with ITP, and she had that exact same symptom, where she was freezing cold all of the time, even though it was in the middle of summer in Southern California! She would insist on wearing long-sleeved shirts and long pants constantly, and would also wear a winter parka and wool beanie hat the entire day and she'd even sleep in them! Even dressed like that, she would still be highly sensitive to the cold if someone opened the front door--even if she was all the way back in her bedroom.

Her doctors also did not think it had to do anything with her ITP. But, it was probably one of the most helpful symptoms she had that I observed, in looking for a homeopathic remedy that could help her. That is a Keynote symptom of a few different homeopathic remedies, and, with her other symptoms, it made finding a good remedy for her quite easy.
She had not responded well to any of the other treatments I was willing to try (In fact, she almost died from them!), but 4 days after a single dose of her homeopathic medicine, she went from 11k to 411k! For the previous 6 months she had hovered below 10k.Since that time, her platelets have stayed stable and normal, usually in the high 300's. She will soon turn 20 in a few months, so you can see she has remained stable for almost 7 years, using only her homeopathic remedy..

You might want to read her story, which I posted on the older forum, in the Natural Treatments section.
Here's the link:
discuss.pdsa.org/topic.asp?TOPIC_ID=23985

April

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Re: My 5 year old 9 years 2 months ago #16403

  • ecarballo
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Had to take her to her hemotologist on an Emergency visit she had bruising all over her body that appeared virtually over night and had some mouth sores... it turns out miraculously her platelets remained stable at 20,000 however we got some more test results back and she had tested pos on her ana test the antibody test for lupus.....

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Re: My 5 year old 9 years 2 months ago #16568

  • 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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Escar:

I'm sorry to hear about your daughter. I'm sure it is a scary time.

Having a positive ANA does not mean that a person has Lupus. Many times, it is incorrectly referred to as the "Lupus test", but it is just one of many tests that diagnose Lupus. Basically, it is just a screening that can determine if more tests are necessary. Do you know what the result is? A low titer ANA may not mean anything at all, even though the doctors call it 'positive'. That result would be 1:40 or 1:80. The higher the numbers go, the greater chance there is of an autoimmune disorder like Lupus. Has she been referred to a Rheumatologist? That would be the next step. There is a set of criteria that must be met before a diagnosis of Lupus can be made. It can also take a long time for Lupus to develop enough to be diagnosed. It may not show up in blood work for years, but some symptoms can be present. Because of that, Lupus cannot really be ruled out in a person who has several symptoms.

I am always cold too and I do have Lupus. It is not a known symptom though; I've researched it to death trying to find a reason, but have never had any luck. I frequently have low Vitamin levels and do treat them, but it hasn't made a difference in my body temperature. I wish! I have a space heater in my office at work that is turned as high as it will go every day.

Hopefully, some of the other parents will chime in and let you know how they handle school. Many of them have good plans with the school and the children do very well.

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Re: My 5 year old 9 years 2 months ago #16609

  • pinkdaisy024
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I am so sorry to hear about the positive ANA. Hopefully it's just the itp causing it. Itp can disrupt that test and also the complement tests. I've been wondering how your child is doing? I have an update and I hope I'm not speaking to soon but when they found my daughters low vitamin d we immediately started giving her D and worshiping the sun. I got an okay to go in the sun from her hematologist because she doesnt have any other autoimmune markers so I wouldnt suggest sun bathing. but, her count has gone now from 88,000 to 103,000. I havn't seen those numbers for over a year. And the IVIG is definately worn off her hematologist said. She must have been higher than 103,000 because she got some petechia like she had dropped some. Wierd thing is I had not had her in the sun for about a week and had removed one of her sources of vitamin D since her numbers were coming up. So, back in the sun for us. I would really look into the vitamin D test because it is good for most autoimmune diseases in general. Anyways, I hope your child is doing well and that things are looking up.

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