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    Suggest treatment for chronic kidney disease

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Posted on Tue, 7 Mar 2017 in Child Health
Question:
Dear Dr. ........,

I am sending to you below the story of a very sick little boy, Ádám Patkós, living in Hungary, on behalf (and with the permission) of his parents.
I help the family in overcoming linguistic barriers, thus I will be the contact person and interpreter at the same time.
In case you can provide any medical help for this 2,5-year-old boy, please, contact us, we are looking forward to your reply!

And now, the story of Ádám:



“My son was born in Hódmezővásárhely, in Hungary, on 03.07.2014. He was born on 39 weeks with caesarian section because of toxemia and breech birth, but as a healthy baby with 2,740 g weight and 47 cm length. When he was 2 months old, his axillar lymph node swelled up to approx. 40 mm on the side of the BCG vaccination. Ultrasound scan showed multiple swollen lymph nodes without abscesses present, then the check-up ultrasound scan showed further growth and also the signs of abscess formation, involving several lymph nodes. We went to the department of surgery, the lymph nodes were cut open, cleaned, and drainage was provided to ensure the removal of pus. We showed up for every check-up examination. Then, about 3 months later the inflammation returned, Betadine washing was performed several times, cover dressing was applied and exchanged. After this, he was treated several times at the department of pediatrics of the local hospital, where he received peroxide treatment, and appeared to recover again. In the August of 2015, he started to have crying spells during the night until he became unconscious. His belly was bloated, he needed antibiotics for a throat inflammation, as he stopped eating and drinking. In the local hospital, blood test results showed very high level of inflammation, and he had diarrhea, so he was admitted to the department of infectious diseases. Here, the stool culture test showed slight positivity for Calici virus. As the inflammation markers remained elevated despite the antibiotics, showing only a slow tendency for improvement, his antibody levels were checked, with every immunoglobulin having low levels. An ultrasound was performed to check his bloated belly, and revealed numerous swollen lymph nodes. We were referred to an immunologist, who excluded malignant diseases. His blood samples were sent for another laboratory test to check cell numbers. On the next immunology check-up he had fever and elevated inflammation marker levels, therefore he was hospitalized for 4 days. During this, Staphylococcus aureus was found in the culture from his axillary fistula. Venous antibiotics therapy was initiated, he was released from the hospital after 4 days as he achieved normal CRP levels. Antibiotics were continued orally at home. On the next check-up, our immunologist recommended immunoglobulin replacement, as he received antibiotics again because of the risk of cross-infection in his hand-foot-mouth disease. Hospitalization was not necessary this time. On 20 November 2015 he received his first immunoglobulin replacement, but he already had slightly high body temperature episodes, high CRP levels, low immune levels, severe iron deficiency (2s iron) and other abnormalities in blood count results, also abdominal bloating and moniliasis in his mouth. Here they told me that his body temperature is elevated because of the moniliasis or teething. He was allowed to go home. I took him to his general pediatric practitioner, who called the hospital to get him admitted to the hospital for testing because of his very poor blood count results and hardly palpable abdomen, as he said he did not know, what the problem was, but certainly there was something. By then we were already over an otorhinolaryngology examination and a urinalysis, which was negative. He was admitted on 2 December 2015, and on 22 December, after a lymph node removal and because of highly increased fluid accumulation and ascites, it have been realized that my son had type A TBC from the pathogens in the BCG vaccine. We spend 3 weeks at the intensive care unit. Antituberculosis therapy was initiated (streptomycin, rifamphicin, ethanbutol and inh). On the same day he had an abdominal surgery, where the surgeon removed the caseous lymph nodes that he could, and my son received a jejunostomy. We started to apply parenteral feeding, he received a gastric tube. At the end of January he was transferred to the general ward, where they started jejunal feeding with 20 ml/hour over 20 hours per day, later he could eat orally too as much as he could. On 5 February 2016 he was released, with medication to be given via his tube, Nutrini drink and with a CRP value of 40, coughing. Unfortunately he developed a fever on the next day, so he was taken back to the hospital. There his blood oxygen levels proved to be low, so he was admitted to the intensive care unit with RS virus infection, and after about a week he was transferred to the gastroenterology ward. His ascites production restarted, and he was given streptomycin again. After long weeks of struggle, ascites production stopped, and he was fine under the circumstances, but from 22 December 2015 he was continuously on parenteral feeding, except for a two-week period. He had another abdominal surgery in July, where his peritoneum was lysed as it was segmented due to pathological adhesions. Lymph node samples were obtained, in which the acid-fast rods were clearly visible. To prevent the infection of his organs, he received wide spectrum antibiotics (meronem, vancomycin, dalacin, ciprofloxacin). First, meronem, then vancomycin, dalacin, and last, around November 2016, ciprofloxacin therapy was stopped. After the last antibiotic was stopped, he had elevated body temperature again, high CRP levels and increased white blood cell counts, but some other antibiotic was given, which was not a wide spectrum antibiotic, he had episodes of elevated body temperature and fever, and his general state worsened more and more. Around the beginning of December, his kidney became close to require dialysis, so rifampicin therapy was also ceased, only INH was continued - his kidney functions recovered. In December 2016, culture from his Hickman catheter showed 2 pathogens: Pseudomonas and Staphyllococcus. In January 2017, his CRP values increased further, then he had extremely high systolic blood pressure values around 190 Hgmm. His general state was very poor, dialysis was almost necessary again, then he received Nubain. His Hickman catheter was replaced with a central venous catheter. During this surgery, they observed that his blood vessels are full with lipids, his blood lipid levels are high due to the elongated period of parenteral feeding. Dialysis cannulae were inserted a few days later, but because his abdominal adhesions prevented abdominal dialysis, they were inserted into a blood vessel in his neck, which was a complicated procedure. On the same day he had a septic shock with blood circulation disturbances, blood pressure values of 50/40 Hgmm. After 3 days of dialysis the cannulae was stuck, it could not be moved.
Current status: insufficient excretion of toxic wastes with urine (nitrogen and phosphate), potassium and creatinine are at acceptable level. His liver functions are fluctuating, currently they are worse, as the level of protein and lipids were reduced in his parenteral feed due to his high blood lipid levels, thus his albumin levels fall, resulting in fluid accumulation. His intestines stopped working because of the anesthesia, therefore bile drainage is insufficient, thus bilirubin cannot be excreted, which should be filtered and excreted by his poor kidneys, leading to a vicious circle. If parenteral feeding could be stopped somehow, it would lighten the load on his liver, but today doctors started to wake him up from the anesthesia to restart his bowels, with 5 ml/hours feeding. Unfortunately any time they attempted to start feeding into his intestines, his abdomen bloated up to approx. 60 cm diameter, he vomited a lot, and his diaphragm was pushed upwards. He has mesenterial edema, the current medical opinion is that this causes the bloating. According to doctors, his intestines became permeable from the intensive antibiotic therapy, and infections get through there. An endoscopic test in the summer revealed a stenosis at the lower segment of the jejunum, where contrast material passed through, only slowly. His stomach was normal, reflux was diagnosed. When laid on his left side, his stomach failed to empty. His stomach was emptying when lying on the right side, and the contrast material leaked back to the pharynx when supine. Currently he is in a serious but stable condition. Blood pressure levels can be maintained with only mild supporting medication. Anesthesia was decreased, he is gradually being waken. Chronic renal insufficiency was diagnosed, and performing dialysis is difficult because of the relatively large thickness of the cannulae. Doctors tell me there is no good prognosis for my son. Currently he cannot be transported. Immunological and genetic tests were performed, where 5 mutations were revealed: a tyrosine kinase mutation, a toll-like 4 defect, and hypogammablobulinaemia, He was also screened for other acquired immunodeficiencies, everything was negative, and immunological tests results were also normal. The reason why he got an infection from a weakened pathogen have not been revealed yet. Currently our blood samples are tested at a clinic in Vienna; so far, they have found nothing else than the aforementioned results.
Pediatric Health Center of Szeged, 14-15 Korányi fasor, Szeged, Hungary Pediatric ICU. Attending physicists: Noémi Vass, pediatric gastroenterologist, Dr. Péter Gaál intensive care unit physician. Dr. Csaba Bereczki, head of institute, nephrologist - they are treating him currently.

Please, if you can, help us save my son! Currently he cannot be transported due to his seriously bad status. I am looking for a physician who could contact our local hospital, or possibly could travel here and examine him.
We are waiting for your answer and advice.

Best regards,

xxxxxxxxxx (Mrs. Patkós)
00.00.2000


doctor
Answered by Dr. Taher Kagalwala 13 hours later
Brief Answer:
It might be a good idea to call in a paediatric intensivist

Detailed Answer:
I am s by 5o sorry to hear about your son. However, I don't think a general paediatrician is the right doctor for your son. I think his results should be shared with an Immunologist, but the immediate need is for him to be seen by an intensivist.

I am not so sure there would be any one Dr who can solve his entire problem.

Best wishes ,

Dr Taher
Above answer was peer-reviewed by : Dr. Prasad
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Answered by
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Dr. Taher Kagalwala

Pediatrician

Practicing since :1982

Answered : 706 Questions

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