Fifths Disease 2
-
-
April 13, 2010 at 4:47 pm
We got some really bad news last Friday when we went to see the Infectious Disease Dr.. She said that she reviewed selah’s chart and that she believes that selah’s cidp and arthritis are both being CAUSED BY FIFTH’S DISEASE OR PARVO B19. She still has the virus and she believes that she is unable to rid her body of it despite ivig and that it will trigger cidp and arthritis for the rest of HER LIFE. She also said that she will carry the virus for the rest of her life too. This virus can do terrible things including brain and heart damage. We asked why can’t she rid her body of it and she said that it is due to some kind of genetic defect that has probably mutated. My husband and I are grieved and my husband has had diarrhea since and cannot sleep. He loves his little girl and she looks exactly like him. You cannot imagine the things that go through your mine when you have no hope given to you.
-
April 13, 2010 at 5:26 pm
My heart is heavy as I read this post. I am reminded how good God is, and also how many times you have told me that your family prays for Ryan. Thank you.. I am hear to give you some hope for your daughter. God is good all the time and all the time God is good..
Even in our darkest hours with Ryan God was with us giving us comfort and letting us know that he will give us hope and I dont know about you but I beleive God is hope and he is our ultimate Physician. He can heal your daughter of this Fifth Disease and CIDP and everything else that is wrong. Continue to pray and continue to look to him for your answers.
The doctor’s may not be able to give you hope but God can. He promise’s us that if we lay it down at his feet he will take care of it, if we call upon his name and ask for it he will give it to us, when 2 or more come together and pray for healing your prayer will be answered. I am hear to tell you that Ryan & I & our family are coming along side of you and your family and we are praying for Selah. I will be calling my prayer group today and will be asking them all to pray for her too.
so keep a positive attitude and keep looking for a doctor that may be able to help. do you do chiropractic care? Ryan started getting weakly adjustments and it has helped a lot, just a thought. we will continue to pray. hang in there it is so hard to see your child go through illness.
You have been such a comfort to us and I wanted to bring some comfort to you as well.
Rhonda
-
April 13, 2010 at 5:32 pm
I sent you a private message.. I am praying for your daughter and your family.
-
April 13, 2010 at 6:14 pm
I am concerned that no genetic testing has been done to confirm the diagnosis of a gene mutation.
You have researched and found information that only high doses of IVIG can help Fifth’s disease. DawnKeviesMom may be on the right track when she suggested higher doses.
Don’t give up and I am praying hard for Selah. -
April 13, 2010 at 6:25 pm
Have the docs tried the 3g/kg. If they are so convinced nothing can be done, then why not at least try the 3 or 4 g/kg. As well, if cytoxan can obliterate the entire imune system, why couldn’t it be tried for Selah. If they say there is no hope and brain heart damage are possibilities, I have to think that they would pull out all of the big guns. If chemo can kill cancer cells, it has to be able to handle fifths. At least they have to sart with the less invasive 3-4g/kg. Praying for you guys.
-
April 13, 2010 at 11:03 pm
Thank you everyone for your questions, prayers and concerns. They said that it was a gene mutation as they have ruled everything else out and that it is such a rare mutation that they are 20 to 30years away from identifying it.?????????????? They also said that no doctor would ever consider wiping out her immune system or doing stem cells as she has an active virus and therefore it would be too risky and no doctor would take on that risk. My son has said that he would be happy to give his sister stem cells and then there is the possibility of another baby and cord blood. What a crazy thought, but desperate times bring about desperate measurements. They also said that if it is a genetic thing and a recessive gene of mine and a recessive gene of my husbands that we could produce another child with the same problems: cidp and arthritis. Is this all crazy or is it me? We are getting into territory here that I no nothing about. Genes and viruses and immunodeficiency. The Holy Spirit lead me to ask about the pcr and the doctors never thought of it. I told them that I am not that smart to think it up on my own as I am just a mommy of a little girl. Something beyond me was at work. Why didn’t any of the doctors think about drawing this before now? I cannot help but wonder if there are people out there, even on this website who got a virus and it lead to cidp. If they could not get rid of the virus for whatever reason, then GBs could turn into cidp. The info I have read says that when you don’t fight the virus off that you do not get the fifhs disease rash and if you don’t get the rash how would you know if you ever had it. I feel like everyone should be tested. When I googled Parvo B19 and neurological problems, there is a definite connection between Fifths and neurological problems. Parvo B19 is the medical name for Fifths. Laurie, the new gal on the website, her sons cidp was caused by Hand Foot and Mouth which is a virus. I think we are all on to something.
-
April 14, 2010 at 7:14 am
I will add this to my Church’s prayer chain too.
Please seek a second and a third opinion. I’m so thankful I didn’t settle with my 1st misdiagnosis. I’m not saying Fifths is a misdiagnosis for your daughter, but it may be or you may find another doc who does have some alternatives you haven’t been given by your current docs.
Pray for and expect miracles. That’s our God’s MO.
Gary
-
April 14, 2010 at 9:25 am
Hi Pamela,
I think the leaky gut thing is a connection too! It is all so confusing. Anyway, the stem cell “harvesting” is your own stem cells. IT is what Alice had. If they feel that there is nothing else, then why not try to see if it is a possibility. If she had leukemia they would wipe her system out, how is is different. Is it the parvo and cidp or is the parvo causing cidp “like” symptoms, same question regarding the arthritis, are the arthritis “like” symptoms or arthritis? I only ask because if they are individual autoimmune processes, that would be 2 plus a virus, I can’t understand why they would not want to wipe everything out. Can you make it to Mayo? They know about things docs have not even heard about yet. Please consider Mayo. You said it yourself, it was your thought through divine intervention that brought that pcr test to light, not the docs. Maybe these docs just do not have the knowledge with this very rare case. We will pray for your family. -
April 14, 2010 at 10:25 am
We would certainly consider mayo. Have you guys ever done mayo and known someone who has? They believe that the Parvo b19 is triggering the cidp and is also triggering the arthritis. It is called reactive arthrits. It is such bad arthrits that it fits the criteria for Rheumatoid. Researchers have found that when they went in and randomly pulled people with RA out of a rheum practice and tested them for Parvo that some of them miraculously tested positive. I really feel like we are on to something here even if it does not help my daughter. I told the rhematologist that she may even have some children dx with rheu that are really parvo and she kind of stuttered and changed the subject. She did say that it is possible. For some reason i am really questioning the medical profession right now. We think that they are so advanced but there is so much more to be done. There is only one PHYSICIAN who knows all things and that is the GREAT PHYSICIAN. Out of ALL the doctors that selah has seen, he is the only one that caught the parvo.
-
April 14, 2010 at 10:35 am
There is a parent that is on this sight but does not frequent it. She is a good friend of mine, we talk almost daily, she is very nice and helped me so much in the begining emotionally. I am sure she would talk to you about Mayo. They have been there twice. They went to the one in Minnesota, as we live in Illinois. I know that you live south, so maybe Florida? Her daughter is now 13, she was 18 months I think when this all started.
-
April 14, 2010 at 12:36 pm
My thoughts and prayers are with your family.
-
April 14, 2010 at 12:56 pm
With all due respect for your Infectious Diseae Doctor. I would want to visit a Genetic Specialist where they draw a small amount of blood to test for a gene mutation. Gene mutations for muscular dystrophy and breast cancer have been tested this way.
I agree with Gary O that a 2nd and even a 3rd opinion might be necessary.
Plus I agree with Dawn to take everthing I say with a grain of salt.
Sometime just a small bit of information, one good idea and the right doctor is the key though sometimes hard to find.
I have no more medical knowledge than the average layperson, but my prayers and concerns are for your little Selah.
My gut tells me there is going to be a positive outcome and that you will find the right specialist. -
April 14, 2010 at 4:13 pm
Katyk,
I cannot tell you what your words mean to me. Sometimes a gut means a lot. Prayer changes things, I have been telling myself this all day as I have been cleaning. I just feel that God has brought us so far to just drop us off with a ” live with all of this and there is nothing we can do fo you” answer from a doctor. Everybody on this website has been such an encouragement, I do not know what I would do without all of you. I pray for all of you, especially when you post a special request.
-
