still not alot of answers :(

[Kristina]

Sorry its taken so long to let everyone know whats been going on. I still dont have clear answers from the childrens hospital, but Matt's Dr here seems to be on top of things with him or at least he is doing something to watch him closely. Matt is doing somewhat better and improving on things that were still not yet back to normal when discharged from the hospital. Last week his hemoglobins were very low, and Matt has caught a cold/virus this past weekend. He seems to be doing alittle better thru out this week but had some blood work done today to check them again.

Im still really confused as the Childrens Hospital said he wasnt tested for the A Typical HUS, but shows all the signs for it and mentions it alot in the report I received. They really havent mentioned any diagnoses for Matt so its hard for me to know what to expect. I just take it 1 day at a time, and I try not to overreact to things. I just dont know what to look for if this was to happen again. I try to research information but there are so many different things you can go into I dont have the specifics to narrow my search. The kidney Drs at the hospital didnt seem to concerned. I had asked them if there was any damage to his kidneys from this episode and they could not answer my question. The genetic Dr has been nice, and they were able to rule out a very rare deficiency but still awaiting some other results from more tests they did. His Dr here has blood drawn weekly to check on the status of his levels, and put him back on blood pressure medicine. We have a breathing monitor ordered that should be coming in at anytime now. I also think we have got his GERDS back under control.

Just been a busy time with the Holidays and getting back to work. Is there alot of other mothers out there that work with a child who has this? Thanks again for giving me a place to find out more information about this. Wishing Everyone a Merry Christmas and a safe and Happy New Year!

[Cheryl Biermann]

I'm glad they are sharing his blood levels, I'm assuming 6.8 was his hemoglobin, you should ask for his hematacrit as well, when Nathan was below 8 he was getting twice daily transfusions, initially some whole blood, but mostly fresh frozen plasma while he was hospitalized. I think the best way to help you is to relate how we were "treated". The doctors were extremely proactive, even when he was home, we were going to the hospital three days a week receiving plasma, then tapered to two days, finally to one day, we did try skipping a couple of weeks at a time but we never got past 3 weeks without a reoccurance. The labs we watched were LDH, red counts, white counts, H&H, platelettes, creatnine, BUN...these are the bare minimum labs as well as checking for protien in the urnie. If his hemoglobin is that low, I would be jumping all over the doctors for more explanations, maybe they do things differently now, but you need this information. Four months between seeing the doctor with his hemoglobin at 10.7 scares me to death! Don't want to scare you or sound outrageous, but we have had kids in big trouble when doctors weren't proactive enough. I hope they have been monitoring his labs at least? Again, I Am Not a Medical Professional, so don't panic, just make lots of notes and ask things like what is this number, what does it mean, and insist on seeing his labs yourself. We were not able to help my mom when she was in an adult hospital because they wouldn't share her labs with her, therefore, she was there a long time, take advantage of being a parent, ask lots of questions and take lots of notes and take notes on anything out of the ordinary with him. That said, I hope you all had a great Christmas and your New Years is better than the old, with lots of answers. Even though they do not know genetically what is causing his hemolosis, they can be treating him for AHUS and tracking the results. You do need pretty much blood for genetic blood draws, unless they can do it with less now, but at 10.7, he should be stable enough. God Bless.

[Jodi Kayler]

Hi Kristina, As a parent, learning how to manage this disease is really difficult. You are doing the right thing to learn as much as possible.
Here are some labs I would ask for if I were in your situation. Ask for a haptoglobin and LDH levels. These labs will show if he is actively hemolyzing cells. Also, watch for shistocytes on the blood smear. That also shows if the disease is active. The creatinine is a critical measurement of how his kidneys are functioning and should be watched very closely. The minute the creatinine increases, treatment should be started. Also, watch for weight gain or puffiness from fluid retention caused by kidney failure. Fluid build-up from poor functioning kidneys can lead to life threatening breating issues.
It is better to catch relapses early--rather than allowing his kidneys to take another hit. I would be asking for labs at least twice a week until you know he is stable. If signs of a relapse are there, we do labs daily and treatment is started immediately. Also, his blood pressure should be monitored daily until everything is under control.
I don't know what your doctor team looks like but you don't have it already, I would get a children's hematologist and a nephrologist involved immediately. You are doing a great job being an advocate for your child. Just make sure your docs are being aggressive enough and providing you with all the answers you need. Hang in there.

[Kristina]

As far as I know they have not done any genetic testing specifically for the HUS, though they keep saying he has all the signs for it. Im alittle unsure what all they have tested for, I just know everything has come back negative. As for treatments, he had 2 blood and 1 platelet transfusions at the hospital. When he was admitted to the hospital on 11/4 his blood levels were at 6.8; creatinine 3.56. When he left the hospital on Nov. 17 his blood level was 10.7; the creatinine at 1.56. But, last week his blood levels had dropped to 7 again. So his Dr here had us come back to do a blood smear and then another blood test to count the red blood cells in the blood stream. I havent heard back from his Dr. but we go in for his 4month check up next week. The company had to order the breathing monitor and has not received it yet so I dont name exactly the name, but he will wear a vest at night and it will alarm if he stops breathing. My only worry is he has never stopped breathing, just really hard and loud as he struggled that morning to get air in him. I havent really had a long talk with his Dr here about contacting Dr Smith yet as the Childrens Hospital hasnt sent him all of Matts records to he knows exactly what all they did while he was there. Hope this helps to fill in some gaps. There were more numbers and names of things but as far as I know his Dr is watching his blood levels the most. Have a Happy & Safe Holiday's to everyone :)

[Svetlana Finley]

Hi, Kristina
I know how frustrating diagnosis can be, it took time for our dr. to find out what is going on with Anna in the beginning. First she was in cancer floor, but then they moved her. Even now since 2002 they did genetic testing and there no answers there, I agree with Cheryl it will be more helpful if u can share what treatments he gets? Did they contact Dr. Smith....
Anna's kidneys are stable and she never required dialysis and hopefully never will need it. Hang in there and keep us updated!!
We all praying for you

[Cheryl Biermann]

Kristina, we might be able to help more, if we knew how they are actually treating Matt, is it with FFP transfusions, steroids or something else? If they have not already, they need to contact Dr. Smith in Iowa, he has the most comprehensive set of genetic testing now. What kind of breathing monitor is he using? Is it a CPAP, or just something that measures his O2 levels? Don't worry about overreacting to things, this is the disease that needs "overreative parents"! Don't let anyone intimidate you all, most of us on this site, have complete access to all the labs, what they mean and a doctors full explanation of every detail of the treatment as well as all of the theories. There are full-time working outside of the home mothers on this site as well, your best bet is to question, question, question EVERYTHING, so many of our kids early on were not monitored closely enough.
When they still have their kidneys, anything out of the ordinary can send them into another episode-it was this way with my son, any fever, any cough, he even developed a large blood clot in his groin that caused swelling and blueness, and we caught it immediately and were being treated immediately because he was already hospitalized. I hope not to scare you, but to "train" you to be the parent of a child with a very damaging and dangerous disease. Please keep us updated, whenever someone is still in the diagnosing stage, the rest of us are like grandparents waiting for their first grandchild to be born, nervous nellies to whom information is everything! Our prayers are with you.