Well since I last posted about my DD Rowan. Things have been a uphill battle. Where should I start. On Dec 6th bleeding started again we were weening the pred down to 4. Called GI told me to increase to 6, went in for a CBC. 3 days later bleeding got worse. Admitted to children's and IV steroids started CBC was 12. C.diff negative. Overnight bleeding increased in the morning started Flagyl to avoid C.diff. Day 3 CBC was 9.6 still bleeding. Day 4 CBC 7.4. she wouldn't eat much and was extremely pale. Day 5 CBC 8.2 thought we were getting better. WBC was rising daily... They didn't share this with me. Enology came in. Started her a saline port for blood draws. This didn't work but the one time they took it after they put it in. Day 6 CBC down to 7.5. They removed saline port the next night bc Rowan said it was hurting her and decided to get the CBC from the blood that poured down her arm. Bad idea bc they contaminated the draw. She tested positive for Staph. Thank god it wasn't real. LOOKING FOR A MIRACLE! Drove to see a parasite scientist that does electro dermal screening from hair samples he found Toxoplasmosis Gondii gave me some homeopathics to purge it from her system. Day 7 CBC 6.5 has to start a blood transfusion she received one unit of blood all RBC. WBC was 42000. She slept through the first half of the transfusion which was started at like 1am. Day 8 second half of transfusion started. 4 hours later, They told me her CBC should be 8.0 it was a 10. Now they started taking CBCs twice a day. CBC was dropping again 9.7 still having blood... Lots of blood. Day 9 CBC was 8.6 and dropping. Steroids not working she was taking 20mg via IV. CBC down to 7.6. Doctors came in questioning the homeopathics they thought I was hiding something from them. I hadn't even started them. Day 10 CBC was a 10 again overnight. WBC 62000. Enology was extremely concerned asked me about my family and cancer and lymphoma. Scared to death. Did a series of blood smears all came back negative. Asked the doctors to test her for toxoplasmosis before released and they refused bc she was not showing the signs which are swollen glands and fevers. But she is on a high does of steroids which would keep them at bay. They looked at me like I was crazy. Still refused. She was released on Dec 19th the day before her birthday. She is not bleeding anymore now. (Holding breath) I tested her pH and it was acidic at 6.5 Asacol releases in a pH of 7 so got her pH back up. Her original doc said food didn't matter but it really does if your acidic. We switched doctors, we now have the head of gastroenterology at children's hospital. He was great and felt the Asacol will work. Fingers crossed. I finally saw my first shell of the pill the other day. She also is taking a Canasa suppository before bed for a month. She cries every night says it hurts, if she didn't fight I probably wouldn't but she is only 4 and this thing is huge. Her cheeks are rose pink today. I hope this is a good sign. Started the pred ween on the 28th down to 15mg.
I have altered her diet dramatically. Alkaline/acidic friendly while sticking with the foods to avoid. We have cut tomatoes completely from her diet. Her previous diet was a lot of Spagetti and pizza. Not that is was normal but we were moving and this was all my babysitters could get her to eat. Grandmas can't say no. Lots of fresh greens avoiding all peppers cooked down or puree. Fruits are only non acidic ones and are squeezed onto everything to keep her pH just right. Very healthy eating no potatoes for the homeopathics therapy says to avoid nightshade veggies. I do think she has this parasite. Doctors were baffled as to why her WBC is so high knowing the steroids and inflammation would make them high but saying this is higher even with these factors. Well if her body is fighting a parasite in her blood. Duhhh. Hoping this all works for her. She is quite the little cook now. We made fruit salsa last night I let her use the chopper to liquify everything. Found a healthy chip she likes. Avoiding milk except lactose free and cooking with goat milk and yoghurt to thicken sauces. Praying for a miracle still. We all started going back to church hopefully we can keep it up. Well that is my story for now thanks for listening.
I have altered her diet dramatically. Alkaline/acidic friendly while sticking with the foods to avoid. We have cut tomatoes completely from her diet. Her previous diet was a lot of Spagetti and pizza. Not that is was normal but we were moving and this was all my babysitters could get her to eat. Grandmas can't say no. Lots of fresh greens avoiding all peppers cooked down or puree. Fruits are only non acidic ones and are squeezed onto everything to keep her pH just right. Very healthy eating no potatoes for the homeopathics therapy says to avoid nightshade veggies. I do think she has this parasite. Doctors were baffled as to why her WBC is so high knowing the steroids and inflammation would make them high but saying this is higher even with these factors. Well if her body is fighting a parasite in her blood. Duhhh. Hoping this all works for her. She is quite the little cook now. We made fruit salsa last night I let her use the chopper to liquify everything. Found a healthy chip she likes. Avoiding milk except lactose free and cooking with goat milk and yoghurt to thicken sauces. Praying for a miracle still. We all started going back to church hopefully we can keep it up. Well that is my story for now thanks for listening.
