Severe Recessive Dystrophic Epidermolysis Bullosa (SRDEB) and Celiac Disease

[great defender]

Hi, i am a father of three children whom have Severe Recessive Dystrophic Epidermolysis Bullosa (SRDEB). despite every attempt at good nutrition bar tube feeding they had faltering weight.. and we lost them to foster care nearly two years ago under neglect.. mum was just diagnosed with coeliac after i told the dr she had coeliac following research online. i had hoped that the children would receive a positive test for coeliac (something they had not considered until i mentioned it recently but one child's blood test result has just come back negative according to the social worker, whom has been informed by the hospital specialist. i have asked for the test results. i am aware they are tube fed mainly, and feel this may have interfered with the test, also they have a condition which can cause blistering and damage to their bowels with SRDEB.  

do you have any advice, do you think i am right in the tube feeding reducing chances of a positive test. what are the odds of a false result? 

The local authority here is totally geared against my family, and i am not just saying that as an angry person, after two years and depression, i have emerged and looked into our case and simply they did not support my family, ran the case purely on opinions of professionals rather than evidence based on fact and ignored our pleas that we did feed the children. since being in foster care, the child whom tested negative for coleiac has worsened iron deficiency, something she now needs occasional infusions or blood transfusions for. 

sadly their symptoms of SRDEB cover all symptoms of coeliac, so they would never be identified as such as sufferers. any advice or medical quotes/references, gladly welcomed. 

thank you for your time and consideration of my trouble. 

[Claire grace]

 

 

On 7/29/2020 at 3:10 PM, great defender said:

Hi, i am a father of three children whom have Severe Recessive Dystrophic Epidermolysis Bullosa (SRDEB). despite every attempt at good nutrition bar tube feeding they had faltering weight.. and we lost them to foster care nearly two years ago under neglect.. mum was just diagnosed with coeliac after i told the dr she had coeliac following research online. i had hoped that the children would receive a positive test for coeliac (something they had not considered until i mentioned it recently but one child's blood test result has just come back negative according to the social worker, whom has been informed by the hospital specialist. i have asked for the test results. i am aware they are tube fed mainly, and feel this may have interfered with the test, also they have a condition which can cause blistering and damage to their bowels with SRDEB.  

do you have any advice, do you think i am right in the tube feeding reducing chances of a positive test. what are the odds of a false result? 

The local authority here is totally geared against my family, and i am not just saying that as an angry person, after two years and depression, i have emerged and looked into our case and simply they did not support my family, ran the case purely on opinions of professionals rather than evidence based on fact and ignored our pleas that we did feed the children. since being in foster care, the child whom tested negative for coleiac has worsened iron deficiency, something she now needs occasional infusions or blood transfusions for. 

sadly their symptoms of SRDEB cover all symptoms of coeliac, so they would never be identified as such as sufferers. any advice or medical quotes/references, gladly welcomed. 

thank you for your time and consideration of my trouble. 

If what they are being given currently is indeed gluten free then they could have a false negative.

Doctor's advise patients not to stop eating gluten until after testing because otherwise the test result can be inaccurate.

 

I am very sad to hear about what happened to your children, have you contacted an attorney? 

 

If you don't mind telling me where you live (Just your general area)  I can find out if there Is anyone in your area that I know of who might be able to help.

 

I have heard of other similar stories happening to families of children with rare genetic disorders, it seems that social workers don't often have much if any medical training and don't understand these conditions.

It may also be that they have a sort of prejudice because they may have encountered people who just use the story of having genetic disorders falsely and as a result, cause problems for everyone else who actually does because of stereotyping. Either way, you should be protected by laws against these things, and assuming there is no legitimate reason for them being taken, an attorney should be able to help you get them back. 

 

 

 

[great defender]

Hi, I tend to agree with your comment. I have indeed got a solicitor and barrister and we are currently going back through court as the local authority have now decided to place a further 3 of my children into Foster care on the basis of non compliance after covid 19 presented difficulties in them gaining access! We are in North Wales, UK.

Thank you

[Claire grace]

It sounds like a very difficult situation, I don't know anyone in that area but I pray that they're in good hands and receiving the best possible care until you are able to be reunited.  I know it must be very hard for you and for them.  Given their health condition, until  your barrister is able to straiten everything out, probably the best thing you can do for them is to reassure them that everything will be okay. I imagine it must be terribly stressful on them (even if they are in the best of care) to be separated from their parents. Please keep us posted  and I will keep them in my prayers.