Hello,
I wrote in FMF area in May and wrote a follow up yesterday. I dont even know where to begin, to make a very long story short. My son was having problems with his health and was having "episodes" he would have fevers, severe headaches, leg pain (where he refused to walk) stomache pain and mood swings and very tired. We were sent from one dr to another and were unable to get answer until we were sent to Immunologist. He told us my son has fmf or traps and was trying to get insurance to pay for test. He told us he had us on NIH waiting list as well. He sent us to a peditrician that was powerful and could get test done, she got it done at the wrong lab and the test was only done on fmf most "common" genes and was inconclusive. This peditrician then decided that my son was "normal" despite being violently ill in her office, and said I was making up his symptoms. On June 10th both our children were taken from us. We have not seen or spoke to them since. We know he has still had problems, and told his Nana on the phone he is afraid to tell anyone he isnt feeling well.
Does my son have FMF or Traps? we dont know, my question to everyone here is, did any dr ever question the symptoms your children were having? what was the rest of everyones lab work like was it normal abnormal,? How frequent were the episodes and how long did they last? Andrew would go anywhere from every 5 days to 3 weeks, sometimes he would have high fever and pain that lasted a a couple of days to sometimes less than a day. I am baffled at the conclusion the dr has come to, but more baffled trying to figure out how to help my little boy. It sounds that at some point you all have been through many dr's and many tests. We are heartbroken and are just trying to find some answers.
Thanks for any advice, I am praying for all your children.
Cindy
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Any Advice Please
5 replies
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- Newest first
- By jan
- Posted October 6, 2006 at 8:33 pm
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Hi Cindy,
I am so sorry that you are giong through such a tough time.
I do not know if I can help but I will try. I am the mother of a child with FMF. I am also a peditrician.
When kids get rare diseases that the doctor may never have even heard of it is not unusual for Some doctors just think we are "crazy neurotic mothers" and blow us off. Before the diagnosis is figured out I do not think it is unusual for doctors to consider the possibility of a parent giving their child something that might make them sick. This really does happen and it si called Munchause by Proxy. It is a seroius psychiatric diagnosis usually in the mother. As doctors we are trained to consider this diagnosis when a child has unusal symptoms that do not fit into a medical pattern. It was considered as a potential diagnosis in my son's case early on. This made sense because the doctor was being thoughrough and, as hard as it is to believe, Munchausens is far more common than all of the periodic fever syndromes combined.
I would recommend that you get a doctor who knows the case and who you trust to talk to the protective services team. You can also ask them to talk to the gaurdian ad litum-often one is assigned by the courts to look at a case from the child's interest and to gather information.
Someone needs to educate the child protection team about his abnormal labs and what they indicate. I think the immunologist you worked with might be a good bet. Also ask the gaurdian as litum or social worker to evaluate him while he is in foster care. Get them to repeat the labs that were abnormal before-usually this would be a SED rate and a CRP, possibly also a CBC.
If they are still abnormal and you have not been with the boys this should help clear your name and get your family back together.
I hope this is helpful.
Again, I am sorry you are going thru this and wish you the best of luck.
Jan
- By Gcbec
- Posted October 8, 2006 at 5:18 pm
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I appreciate your response. I was accused of MSBP, not because I gave my son anything but because the dr that saw my son 2 times and knows nothing about him decided I was making up my sons symptoms. I find it very hard to beleive a dr can come to this conclussion after seeing my child 2 times, and after several people have seen him sick. Teachers, neighbors, friends, coaches, even people that worked in the resturaunt we went to frequently. Everyone here knows when you have a child that is sick you dont know what to do, you take them to the dr and trust they will help, who ever thinks the dr isnt going to beleive you? And if they didnt tell me , I dont beleive you I think he is fine, but to take innocent children from loving families because they are either covering up malpractice or because they want to make a name for themselves IS WRONG...Like you said, some people poisoin their kid, well them call it attempted murder and posioning not MSBP. But to say a mom is lying about the childs symptoms after seeing him 2 times is wrong.
To give you an example, my son had tubes in his ears and adnoids removed at 3 years old. According to this dr who didnt even know my son then she said it was unnessicary and I duped the dr into preforming the surgery. Now the dr that did the surgery testified in court and said it was absolutly nessicary, but because accusing dr is considered "expert" in MSBP, the judge beleived her. So what she is saying is ent dr was malpractice? I dont know but as a dr I am sure you would never prescribe something unless you felt it nessisary.
Now the question is how is my son, well they stopped medication Adderall the day they took him from us. When my family was first allowed to visit him and my daughter my son was having problems, he was having severe stomache ache and headache, also he had a feer when my friend was there. All theses things were never reproted to anyone, and what happened, the visits were stopped by our family and friends. My son told my mom he is afraid he is not allowed to tell anyone he is sick or doesnt feel well. SO is he better away from us? well the accusing dr plays another role, now she is Primary care dr, they were taken away from their primary care ped and she saw them 1 time in July. SHe said he is totally fine nothing wrong with him very healthy. Once again do wwe beleive her?
I dont know what is wrong with my son, but let me say, what would anyone here do if this happened to them before they got a diagnosis? SO again, my question is, How can they diagnose and what symptoms did children have, and how long did diagnosis take? Oh yes and my son had increased sed rate and some other things, they will not retest or take any blood work that is invasive. They are strictly going on 1 dr word. I also was evaluated and all my sons records were reviewed by 2 top forensic psychologist one in Oregon and one in New Hampshire. They both did different approach but found NOTHING to indicate MSBP. In fact they actually found some medical malpractice in some of the files, like my son was on reglan and the adderall.
Where are you a peditrician?
- By jan
- Posted October 8, 2006 at 9:02 pm
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Hi,
The case sounds complex and very sad. I am sorry you are giong through this.
The symptoms of FMF are described well at a site called FMFcommunity. Most kids have fevers, some joint pain, belly pain and headaches. The average time of diagnosis is 5-6 years after symtpoms began. The best way I can think of for you to address this is to work with your old pediatrician and the immunologist as well as a gaurdian at litum. Good luck.
- By lisalau
- Posted January 28, 2007 at 6:43 pm
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Hello Cindy
I have sent you a message along with a friends invitation but i wanted to contact you in any way possible, so here I am in your discussion.
My name is Lisa and I have fmf
I am part of a wonderful support group held at yahoo groups who have read your message and are deeply moved by what has happened to your family. I want to invite you to join us, we have many parents of children with fmf and traps and you describe everyones worst nightmare. I sincerely hope that your situation has improved since this posting.
You will find us at yahoo groups, health, genetic illnesses, fmf but my dear friend Amanda has sent you a private message with links as she is wonderfully computer savy, something which i am not.
This invitation is issued ofcourse to all members here, i hope that isnt against any rules of this forum. The fmf yahoo group is both supportive and educational.
My heartfelt wishes that everyone who is sufering in this forum, or cares for anyone that is suffering, are improving and finding some peace
warmest regards and in hope that this situation is rsolving itself in the best manner for the health and peace of your family
lisa
- By traceyfreeman
- Posted January 29, 2007 at 7:11 am
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Dearest Cindy,
God bless your spirit!!!!!!
After reading your story it truly took my breath away.
In this day and age there is a lack of medical knowledge concerning Periodic feaver syndroms.
You are not making this up
The symptoms are real
The pain is substantial
My heart goes out to you and your family, It is my sincere prayer that you are reunited with your children.
Dont give up and please keep the faith ~~~ KEEPING YOU IN PRAYER ~~~ Tracie
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