wait till you hear this
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April 7, 2010 at 11:00 am
I haven’t posted a whole lot for a while so let me get you caught up. My daughter got gbs/cidp 12/08 as a result of Fifth’s disease or other name Parvo b19. They kept asking us in the hospital if she had had a cold or a vaccine or anything and we said no, just Fifth’s disease. They FINALLY drew a titer and came back and said WE FOUND THE CULPRIT. Her titer was sky high. She also had reactive arthritis as a result of fifth’s in about every joint. The arthritis was overlooked because of the emphasis on gbs/cidp. Fastforward: we started getting weekly ivig and everything just seemed great. Everytime the doctor tried to stretch out her infusions to every other week, she would start crying at night and we assumed that she was demylinating. She also seems to have problems with her hands and I kept telling the doctor that I thought her hands were more affected with cidp than her feet and he said “whatever is going on with her hands does not appear to be cidp”. Got her in to see the rheumatologist and she said lets do an mri. The Rheumatologist called us yesterday and said that according to the mri that Selah’s hand bones have FALLEN OFF OF HER WRIST. The arthritis is so bad and she probably has it in the other hand too. During the last year and a half since all of this, I have asked for 3 Fifth’s disease titer to see if this is making a different and they all came back strange and we were told that they were probably affected by the ivig. I started doing to research about a month ago and looked into tx for fifth’s disease arthritis and found high doses of ivig to be the only experiemental cure. Proposed this to the rheum and she said that this is too ON THE FRINGE. Talked to out local pediatrician and gave him some research articles and he called a friend in infectious disease at the children’s hospital and she said she was willing to go out on a limb and order a pcr. I understand that this is like a dna test for certain bacteria and viruses. We had Selah’s blood drawn and guess what, IT WAS POSITIVE FOR FIFTH’S DISEASE. OUR PEDIATTRICIAN IS LIKE FREAKING OUT AND SAYS THAT THIS IS REALLY UNUSUAL. She still have Fifth’s diseasse since 12/08. How can somebody have a virus that long. I think that this is precipitating the cidp and arthritis. Any thoughts. She still have fifth’s disease rash on her little hands after 1 1/2 years.
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April 7, 2010 at 11:52 am
I hope you get some answers, I was feeling sorry for myself cause I don’t feel well after my IVIG yesterday, (Very high blood pressure) but…
After reading this post about your little one I just want to cry! It is not fair to make the little ones suffer so much. Keep calling and bugging your doc’s to get some help.
Big hugs to your family,
Rhonda from Canada
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April 7, 2010 at 6:12 pm
Funny you mentioned titers, I just told someone else on the sight, I think Jbeatty about checking titers before getting vaccines too. We checked the ig levels too. Why did Dr. Mendall stop the ivig before, did he lower the amount? Can you talk to the new administering doc and convince her to do the higher amount(3g/kg has been used/tolerated with young children) KEep us posted.
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April 7, 2010 at 9:02 pm
Dawn,
They did some new blood work called PCR. According to my niece who is a veterinarian, this is the new thing. Instead of checking for anibodies against a virus or whatever, it checks for DNA anywhere in the body. Selah testing positive PCR means that she still HAS the virus. This is crazy. Dr. Mendell never stopped Selah’s ivig, he has just been spreading it out. She got weekly for a long time and then we went to every other week and then we she cried in the night, we went back to weekly and then now back to every other week. He wants her to go to every three weeks. He does not change the dose, he just spreads out. Now that I know about the arthritis, I would be more willing to go to every third week, but the experimental thing that they are doing for Fifths disease arthritis is high doses of ivig over 5 days and then maybe another 5 day dose two weeks later. Selah does so much better with weekly, 2 hour infusions. No one that I have talked to has ever heard of someone having a virus for 1 1/2 years and not gettting over it.
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April 7, 2010 at 9:03 pm
Oh my. It’s time for me to have a good cry. I cant even imagine a precious little 3 yr old girl going thru so much.
I am so sorry.
Your family and your precious baby girl are in my prayers.
God Speed in finding the answers AND solutions to make her better right away. And strength to you as you get through this journey.hang in there friend.
Stacey -
April 7, 2010 at 9:28 pm
I wonder if that pcr test you mentioned is what the gastro was talking about. He said that there is a new test that can test the dna for candida? It is more accurate than a stool sample. He did not know a whole lot about it because it is not being used for the candida yet. I am going to research it thank you.
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April 8, 2010 at 12:40 am
I saw your prayer request on another post and sent prayers for Selah earlier. But no matter – I shall pray again – and keep her on my list. No baby should have to go through this. I had 5th’s about 10 years ago – they thought it odd for an adult to get it, and so bad. It took years to get my stamnia back. We didn’t do DNA checks then. I am begining to wonder if there is a connection between GBS and 5th. They both leave you so dibilitated. More to think about – – –
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April 8, 2010 at 8:44 am
Cathie,
You read my mind. I was reading on the internet last night about the strong connection between Fifths and autoimmune disorders. It was extremely convincing. I laid awake and thought about this. Can you tell me more about your fifths experience? thanks
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April 8, 2010 at 9:40 pm
Hi –
After talking with many of you this week, and sharing LJ’s story (got CIDP at 3 yrs of age after having cocksackie virus 3 weeks prior) I’ve been scared to stop the monthly IVIG treatments like dr wanted to do this month. We got lucky Dr Finkel at CHOPs had a cancellation tomorrow and we are heading to see him to evaluate LJ again and give us a 2nd opinion on treatments. He has been recommended by the foundation as a dr who has worked with pediatric CIDP before and was so much more detailed than our neuro. I am going to share these notes on PCR tests and ask him to run one on LJ to see if he might have similar traces related to the cocksackie virus he had in June 09, 3 weeks before coming down with syptoms of the CIDP.
I’ll keep you all posted as well.
Since connecting with you all this week, I feel SOOOO much better and blessed to have your thoughts and prayers and experience. We don’t feel alone anymore! -
April 13, 2010 at 3:28 pm
Wow, so much to think about! I am so very sorry that your little one is suffering. I sit and cry sometimes during treatments with my daughther, the little ones that come in and cry and don’t understand. None of this is fair to any of you and it just seems that there is so much information out there and there is not just one repository for all of this information collectively. I do think that my daughter had fifth’s when she was very little.
I wish everyone a great day! and hope that tomorrow is just a little better than today.
MomtoHeather
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April 18, 2010 at 9:11 pm
The infectious disease lady has ordered a lot of blood work for selah and one of them is called Lymphocyte stimulation test by Candida and mitogens. She is also ordering t and b cell immunophenotype. Can anyone out there help me understand what these are in simple terms. You guys are great teachers.
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April 19, 2010 at 9:23 am
Pamela,
OMG, in my very small mind, I am thinking your doc is thinking what I have been thinking but everyone thinks I am a wack job. Anyway, it all has to do with that leaky gut thing. I wish my docs would start listening to me or your doc!!I think they are checking the lymphokines to see if there is an abnormal production of them by the t-cells, hey there is that word I have been talking about, t-cells!! The abnormal production happens in response to bad candida.
These issues of the abnormal prod of lymphokines make us sucseptible to infections viral or bacterial (your fifths issue) and imune and autoimmune diseases. Your continual fifths and the inability to irradicate it is causing the other autoimmunes such as cidp and the arthrit. to trigger because of the candida overgrowth (bad candida, not good, the bad wipes out the good)
Lymphoid cells and phagocytic cells are essential for regulation of immune responses. Abscence of these cells causes or creates inflamatory processes….cidp arthritis.
Ask them to also check transferin and secretory Iga. These both have to do with leaky gut. It is all combined and feeds off each other. The eradication of the candida (that they mentioned to you) stops the injury to the mucosal lining in the intestines and the abnormal production of the above mentioned cells stops, the t-cell regulators start working properly.
If your doc is on to this, they may also know about the worms, ask them. The worms cause a protein that regulates or modulates the proper t-cell regulator production therefore balancing everything out. It is way more complex than this, it has been months of research, this is only a quicie condensed version. Ask Kelly to send you the info I sent her for you. It goes into detail about candida, worms, imune responses etc. There are three docs in the US that have FDA aproval for these worms. It is now legal through them, they are advanced in the trials for the use of the worms and are working with big pharma. But now, today, you CAN get them through these docs legally. One is in Boston, one in Wisc. and one is only a few miles from my home in Illinois. I am going to see how this candida irradication goes that we are doing, stay on the ivig another year and then if we can’t wean down again, I am going to look into the gastro in Illinois that has the fda approval.. Good luck, your doc is looking at all angles, thaT is awesome because the regular “stuff” just is not working!!
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April 19, 2010 at 10:30 pm
I am getting the impression from this lady that the leaky gut thing is the furthest thing from her mind as she did not even mention it. I think that candida must be an entity of its own outside of leaky gut but I do not know how. She is looking for any reason that would explain why selah has been unable to rid her body of the parvo b19 despite getting ivig. She put in her office note that she really believes that it is a genetic mutation that is specific to parvo b19. That sounds really far fetched but it seems like the whole last 1 1/2 years has been bizarre. Everything we have been told over the last year is that selah is like a 1 in a million or 1 in a million and a half. I have done a lot of research and I have really given this over to God. I know that my husband was the perfect one for me and for someone to say that together we produce a mutation just does not sit well. GOD IS THE MAKER OF ALL THINGS AND HE DOES ALL THINGS PERFECT. We see Mendell tomorrow so please keep us and the massive amount of blood work that they are doing tomorrow in your prayers please.
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