Colonic Lymphonodular hyperplasia

[aethridge827]

My two year old daughter was recently diagnosed with Colonic Lymphonodular hyperplasia via colonoscopy after bloody stools since July with intermittent ABD pain. She has a history of food intolerance and we thought it might be associated.The pedi gastro said she will possibly outgrow it. Last week her daily stools became more frequent ranging from 3-16 per day with significantly more frank blood. The cramping and pain has intensified waking her frequently in the night. I have many questions but wanted to know if any of you have experienced similar situations and if anyone was aware of any treatment options. I ve read some studies where steroids were used with success. I can not find much info on this disorder any help is appreciated.
Anna

[AnkeM24]

Hi Anna, our daughter has diarrhea for 4 yrs now which increase. After 2 colonoscopies finally they found increased Eosinophiles and Lymphonodular Hyperplasia in the entire GI tract and stomach. Doctors assume she has food allergies, however they put her on Chromolyn Sodium Oral solution. So far it did not help yet. She was misdiagnosed for all these years as IBS and took Lomotil. Anything you can recommend from ur own experience. How far are you with your kid's health? Hope better. Can u contact me?
ANKE

[CalGal]

Quick and easy way to start is to use google as a search engine, type in Colonic Lymphonodular hyperplasia and go to the 'scholar' function - should be on the top (may have to use 'more' to find it). It will take you to a series of papers. Note the 1st authors names and you should be able to search further using that information. You can also use www.pubmed.com and 'colonic lymphonudular hyperplasia' to be able to successfully search.

[aethridge827]

Thank you for your responses.She has not had an upper endo I asked the pedi GI about it and he said there were no reasons to do both at the time. I will check out the hospital in Cincinnati Mammo. Thank you anything thye can offer would be helpful. CalGal do you know where I can find the papers. I have searched the medical journals for this diagnosis specifically but not specifically food allergies. I have limited time as I also work fulltime and go to grad school at night. I am keeping her hydrated with Popsicles, pedialyte and fruit. Her appetite is some better but she is still having frequent BM's today 5, and the first 4 were before noon. I feel so overwhelmed and frustrated . Her pediatrician has no clue and the GI just says it is this disorder but it has gotten much worse very quickly and I feel like there may be more going on. He hasnt seen her since the colonoscopy about 2 months prior.She also bruises easily but all of her clotting times are normal. The pain is just so intense for her even with the tylenol with codeine that the pedi prescribed. She has also had Lomotil with little success..
Thank you for your support
Anna

[CalGal]

There are a series of papers on on this subject and many of them focus on food or food-allergy issues in conjunction with the problem. Has she also had an upper endoscopy? Some of the evidence suggests that when this is done the duodenum will also show similar lymphonodular findings. In a number of cases a diet excluding both dairy and wheat has been tried with success. In others - with high eosinophilic count - more extensive food testing may be necessary.

[mammo]

Hi Anna. If I were you, I'd contact Cincinnati Children's Hospital.  They are recognized as the premier unit in the country for Pediatric Gastroenterology.  If you go to the link below, there is a way to contact them, and they are very responsive.  They are on the cutting edge of everything when it comes to children.  Parents travel from all over the country to have their child evaluated and treated at Children's Hosp. They also help with setting up accomondations at the Ronald McDonald House for parents.  Your child is really suffering, get other opinions, this hospital saved my grandson's life after being treated at another so called "Children's Hosp."  With your daughter having so many bowel movements, it's imperative to keep her well hydrated.  Dehydration is very serious, I hope her GI has addressed this with you.  It's about more than just water, she is also losing electrolytes which need to be replenished, Pedialyte is good for this, along with bananas and orange juice. This conditon has been related to food allergies, but determining what foods she is allergic to is time consuming, and in the meantime she is suffering.  You truly owe it to her and yourself to get an opinion from Cinti. Children's Hosp.  I wish you and your daughter all the best.  It's so difficult to see them hurting. Take care.


http://www.cincinnatichildrens.org/