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GUILT #255410
07/22/13 07:18 AM
07/22/13 07:18 AM
Joined: Jul 2013
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scaredmom Offline OP
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scaredmom  Offline OP
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frown Does anyone else feel guilt for not finding help for child sooner? My dauter had her 1st flare four years ago the beginning of her Freshman year. We actually thought she had broken her wrist. Doc saw nothing and put her in a splint for comfort. We went back several more times. Never got any answers. Bloodwork always came back normal. Doc would say text less even though she hardly does text or tendnitis other such meaningless diagnosis. Meanwhile pain spread everywhere concentrating in her back. She hurt every day for three years. Eventually refused to go back to doctor. She is a high achieving driven young lady. Finally I cut her off over the counter pain meds. I had to push the doctor visit. After a few weeks she agreed to the doctor. He seemed open at 1st but again changed tune when bloodwork came back normal. I was convinced she had fibromyalgia so I insisted on seeing a rhematolgist. He found inflammation throughout her body including the spine and damage to her hip joint. I cannot express how guilty I feel for not being on top of this years ago. So many times my poor girl held out her hands, wrist, foot or back and asked me if it was swollen. I always said not that I could see. For six months her hands turned blue (Raynaud phenomenon) without me noticing or her telling me. You might think we are not close but to the contrary. I would go every weekend with her to debate tournaments. We spend more time together than most. I knew she hurt but it was as if the hurting became normal for us both. It is so crazy that I let this go on for soooooo long. I feel so guilty that she has hip damage thatcould have been prevented or at least delayed. I know guilt helps no one but I feel it anyway. Any mom out there have any similar experiences. If I could I would bare this pain for her though I would never be as determined and courageous as she is.

Re: GUILT [Re: scaredmom] #255566
07/25/13 01:25 PM
07/25/13 01:25 PM
Joined: Jan 2010
Posts: 3,148
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cemc Offline
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Easy to say "don't feel guilty" but kind of hard to do sometimes.

If its any comfort, the average delay from onset to diagnosis is something like 8 years, so actually you can pat yourself on the back for having her diagnosed within 4! Its not just parents who "miss" the signs either - doctors frequently fail to pick up AS until its very obvious, and if doctors with medical training can't spot it, how would they expect parents to? In fact, you did do well - you took her to the doctor, you kept taking her back, you pushed for doctor visits and rheumatologist.......and you got there. Please congratulate yourself rather than beat yourself up.

Also, don't think too much about permanent damage until she has got her treatment working - you may find that what you think was "permanent" disappears completely with appropriate treatment. Some folk have had absolutely incredible results from treatment.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: GUILT [Re: scaredmom] #255615
07/26/13 02:34 PM
07/26/13 02:34 PM
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scaredmom Offline OP
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Thank you for responding. I am feeling much better. After reading the many stories here and on the teen site I realize that our journey is typical. This is a sad fact. Pedatricians need to be better trained to recognize AS.So many stories report symptoms beginning in early teens.


I cannot say that all guilt is gone. That will take some time. I do give myself credit for always believing in my daughter. I never doubted the intensity of her pain. I always thought there was something wrong. I finally did dig in my heels and get her help. I wish I had done it sooner but there is no changing the past.

I am in a much stronger place. This is her fight but I will be there to support her all I can. I have great faith in my daughter. She has the strength to handle this and when she does not have the strength I will be there to hold her up or just hold her while she cries.


Re: GUILT [Re: scaredmom] #255616
07/26/13 02:35 PM
07/26/13 02:35 PM
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Posts: 37
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scaredmom Offline OP
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Thank you for responding. I am feeling much better. After reading the many stories here and on the teen site I realize that our journey is typical. This is a sad fact. Pedatricians need to be better trained to recognize AS.So many stories report symptoms beginning in early teens.


I cannot say that all guilt is gone. That will take some time. I do give myself credit for always believing in my daughter. I never doubted the intensity of her pain. I always thought there was something wrong. I finally did dig in my heels and get her help. I wish I had done it sooner but there is no changing the past.

I am in a much stronger place. This is her fight but I will be there to support her all I can. I have great faith in my daughter. She has the strength to handle this and when she does not have the strength I will be there to hold her up or just hold her while she cries.



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