Tuesday, March 31, 2009

TEC

Transient erythroblastopenia of childhood (TEC)this is what the doctor diagnosed Daniel had while he was sick. Again, he is healed. He nolonger has to conditons, praise God. Here is some info I found on http://www.drgreene.com/21_808.html,
this a question and answer site... in this describption Dr. green is writting about a little boy, this is not Daniel,... he is writiing about some other other little boy.


"The average life span of a red blood cell is 120 days. Every day, just under 1% of our old red blood cells retire, to be replaced by an equal number of fresh young ones. We depend on this steady supply of new red blood cells. If something were to interrupt this supply, we would be completely out of blood within 120 days, but would probably die within 90 days from not having enough red blood cells to deliver the minimum amount of oxygen needed for life.

Your son's diagnosis, transient erythroblastopenia of childhood (TEC), is a condition in which new red blood cells stop appearing. The children with TEC are otherwise well, so at first nothing appears to be wrong. Each day, though, they lose about 1% of their red blood cells. Very gradually they become tired and pale. After a number of weeks, the children are usually brought to the doctor because this fatigue and pallor become quite noticeable.

The physical examination is usually normal, except for the pallor and an increased heart rate (the heart is working extra hard to pump the limited number of red blood cells around the body faster). The complete blood count (CBC) usually shows normal looking and normal sized red blood cells that are markedly decreased in number. The white blood cells and platelets are usually not affected. Reticulocytes (immature red blood cells) are profoundly fewer than normal, until the child is beginning to recover.

TEC is uncommon, but has been seen with increasing frequency over the last few years. It occurs most commonly between the ages of one and three. TEC is thought to be triggered by a viral infection occurring 2 weeks to 2 months before the TEC. Some investigators have linked TEC to parvovirus B19, the virus that causes Fifth Disease, or Slap Cheek. In a recent study of six children with TEC, however, none of the children tested positive for parvovirus (Archives of Pediatrics, February 1995). There are also researchers who believe there may be a genetic component to TEC, but have yet to identify any responsible gene (Journal of Pediatric Hematology/Oncology, 29(9), Sep 2007, 659-660).

In children with TEC, red blood cell production will recover spontaneously -- usually within 30 to 60 days, but sometimes longer. In some children, transfusions are necessary to keep them alive and decrease their symptoms while waiting for this spontaneous recovery. Transfusions are given when the number of red blood cells is low enough to begin to severely affect the child's health. This usually happens when the measure of red blood cells called the hematocrit ("crit") drops to about 10 or 11, though the “cut-off” for giving a transfusion will be different for each child. A transfusion may be indicated sooner if there are significant symptoms or if there are no signs of early recovery in sight. Steroids have sometimes been given to children with TEC to try to hasten recovery, but this does not seem to be of any value. Iron supplementation may help a little, since iron is needed to build red blood cells.

If TEC occurs outside the normal age range or if recovery is prolonged, further workup should be done. Likewise if the platelets or white blood cells are low in number (they can be mildly low in up to 25% of cases of uncomplicated TEC), or if the red cell size or appearance is unusual, further tests are indicated to rule out other, more serious, conditions (such as leukemia or Diamond-Blackfan anemia).

If your son follows a typical course, his crit will begin to rise within a few weeks. The first sign of recovery will be a rise in his reticulocyte count. I am thankful that transfusions were available to support him until his own bone marrow begins producing red blood cells again.

Alan Greene MD FAAP

Reviewed by: Khanh-Van Le-Bucklin MD & Liat Simkhay Snyder M.D.
Originally published: November 04, 1996
Last reviewed and updated: May 2008"




Praise God, doctor of doctors!









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Praise God! Daniel is healed!

Hi All,

Thank you God for healing Daniel. Thank you to all who begged God to heal our little boy.
Once at CHEO this morning, they checked Daniel's vital and then he got to play in the awesome playroom. Daniel then had an IV put in. The IV was to give him fluids and later medication to sedate him for the surgical procedure to biopsy bone marrow. We then saw the doctors. Dr. Johnston, Daniel's hematologist, was very nice. She took the time to go over Jacob's and Esther's blood work. Both of them are fine according to her. Our family doctor wants Jacob's blood sugar tested in a little while just to make sure everything is ok as his HbA1 was slightly low. Dr. Johnston said it would be a good idea to have Esther's blood work done in a few weeks gust to make sure her hemoglobins are climbing and are at good levels, but she is not worried.
Since, Daniel had fallen asleep we were brought to a "quiet" room to wait until they were ready to bring him to the operation room. After a short while in the room, Dr. Johnston came back in the room. She told us that they had jsut received Daniel's blood work from today. We were a little nervous... She told us that his hemoglobin were up to 101... praise God. They had increase from 90 to 101 in 4 days!!!!!! The ricket number (the number of new cells) were at the appropriate levels. She told us they were cancelling the biopsy as his bone marrow had started to produce hemoglobin again.... I started to cry tears of joy. I asked her "This means he is healed?" ... she said "yes!".... He will go back on May 1st, 2009 for a check up with blood work to confirm everyhting is still were we want it to be. She also recommended that we still wait a few months before he receives any vaccinations... but otherwise he is a healthy little boy.... Hurray... Thank you so much for all the prayers/ petition you have sent up to our Lord and King. God has touched me in many ways during this ordeal and your support in physical, emotional, and spirital ways hav ehelp in more ways that I can begins to explain at this time. Now, my children can play with a mommy who is not worried about their health. And I have an house to try to get back into shape.
We are looking to hire someone to come by from 9am to 1:30 am (maybe 2pm) either on Wed. or Friday (would perfer Fridays) to help me get the kids outside to play.... maybe do a little house work... or watch the some kids while I play with the other ones.... if you know anyone interested please let me know.
Daniel will still be on anti-seizure medication for one year due to the amount of seizure he has had... but the keppra (anti-seizure medication) is working well. He is also being followed by "first-words" a speechpatholgy program here in Ottawa due to a large tongue causing difficulties in saying the "e" sound and the long "a" sound.
God bless,
Roxanne

Monday, March 30, 2009

Jacob test result puzzling

Any nurse or hematologist out there... can you please tell me what a low HbA1 means, and a just a little high HbF,...
Jacob result from his Hg Electrophoresis tests are back:HbA1 94.5% (normal is higher then 96.0%) - hence a little low, HbA2 is 3.4% (normal is 2.0 - 3.5%) - hence he is just a the normal top, and HbF is 2.1% (the normal is below 2.0%) - hence he is just a little high. No hemoglobinapathy detected. From what I can figure out with the internet: hbA1 could relate to blood sugar amount - he was hospitalized as a newborn for low blood sugar was on glucose IV drip for 3 days and then came home on day 4. No one ever checked his blood sugar levels since then.HbA2 is a mistery to meHbF is high when your born and decrease as you age, maybe it is high at age 3 3/4.... I would love your input....Dr. Rabie our family physician will get a call from us tomorrow, inbetween getting Daniel's biospy done.
We still have not received Esther's blood work. With al lthe worry,... those little sleeping aid the doctor gave me should come in handy.
The reason we get the result sent to us, is because our doctor has a hard time getting the result s through her fax machine. So if anyone wants to donate an extra telephone line to Dr. Rabie.. go ahead. But I can't complain to much she and her team are great.
They get double thumbs up from me.

CHEO called Daniel's biopsy is tomorrow

HI all, Please pray. CHEO called this morning. They have changed Daniel's bone marrow biopsey date. Dr. Johnston wants it donw tomorrow rather then thursday. The excuse they gave me was that they are overbooked on Thursday, and they want his done sooner then later. All childcare arrangements were made in less then 5 minutes and Joey is hoping to be able to get the day off tomorrow.Please pray for all of this. I am nervous. I was taking real comfort that Daniel's biopsy was going to be on the anniversary of John Paul II's death. But then again maybe he has something to do with them changing the date. The sooner we have answers the better. Miracles are happening! Please pray that we get Esther's iron levels back today. I am so nervous about that. Her hemoglobins are low too, and we need to know if it is due to iron deficiency before we go ahead and put her through all the testing like Daniel had and is having. Please also pray that I relax. My body is aching so much,.. it is really hard to sleep. and went I do it is not very deep. thank you,If you have any prayer needs, please let me know. I would like to offer up the procedure tomorrow for those in need.God bless,Roxanne

Colapssing or not!

With the exception of labour, I don't think my body has been this sore. I feel like my body will snap or collapse. Last night, Joey sent me to bed early. It was wonderful to sleep by myself (without Daniel by my side). Joey ended sleeping in the twins room with them in their crib for a little while, until Daniel started his coughing fits and woke up Esther. That is when we all played musical bed. Jacob had just woken up and managed to snuggle me in my bed. Hence, Joey took Daniel to Jacob's bed and I snuggled Esther in the single bed in her room. I eventually managed to get bak to my bed for a few minutes unitl Daniel woke up yelling for Mama! Then again it was 6:50 am.
It has come to our realization that I must not be getting any REM sleep due to high stress and being Daniel's nurse around the clock. Hence, Joey gave me that brake last night. Daniel had about 4 coughing spells last night which each lasted 30 minutes or so. .... but otherwise seems to be handling everything well.
Any know of any muscle relaxants which still allow you to drive?

Sunday, March 29, 2009

Sleep or no sleep

The house is quite,... and I should be sleeping. It seems the pressure to sleep is keeping from sleeping or maybe it is all the chocolate I have been eating. I know it is lent and I should probably not eat sweets but with all the stress going on around here,... a few handfuls of chocolate cannot hurt!!!

We meat with our small community of families tonight. It was great. Our piano was played by a great pianist and guitar strings where plucked and the house was filled with praise and worship to our Lord and King. Stories of how God heals terminal illness where shared and rejoicing took place. The children received prayers and they danced like no one was watching... with the exception of their heavenly Daddy.

At bedtime we had a little incident that is just to funny not to share.
Months ago we decided to switch the twins from formula to cow's milk. We did it gradually. Esther did not mind at all. When we got to about 1/2 formula and 1/2 cow's milk Daniel protested and refused his "baba". We kept it up for about 4 1/2 days until I could nolonger handle this little boy who was misbehaving and tantruming all the time. I gave him a formula bottle and he returned to his joyful self. Since, then he had been having formula and Esther cow's milk. Esther will have formula when we are out and about just because it is easier. We have wonder what Daniel who say to trying cow's milk again... well...
tonight... Daniel asked for his bedtime bottle and we gave it to him... but he took a few sips and rejected it. This happened several times. He kept begging for a bottle, and he was refusing to fall asleep without a bottle. We would give him his bottle and he would reject it and say NO! Joey was trying to rock him to sleep, when it hit me... had we accidently given the formula bottle to Esther and the milk bottle to Daniel.... I made a new formula bottle handed it over to Daniel. He took a few sucks ... and happily sucked all of it back. And was asleep in minutes. Guess we got our answer.

With that I think I will go catch some ZZZZZZZZ

Saturday, March 28, 2009

Daniel's second visit to oncology/ hematology clinic

Hi All, Our second day at the clinic went fairly well. Daniel's hemoglobin were at 90! On Wednesday Daniel's hemoglobin were 69; hence he received a blood transfusion, in the in the emergency department on Wednesday night they were 93. The Doctors are not to worried about the drop form 93 to 90. They had told us on Wednesday during the transfusion that they would expect his haemoglobin to be at 90 on Friday. The not so great news is that many of the virus for which Daniel's blood was checked for are showing negative meaning he does not have them. (We are still waiting for one result to come in but it probably will come back negative too.) this is not so good news because if it was a virus causing all of this, the nightmare would be over with at the most in a few weeks. Daniel still had a fever yesterday at the clinic. As this was day 5 of fever he had a chest x-ray (which he hated), and urine sample taken (which he also hated). The chest x-ray was clear and the urine sample will take 24 hours to come back. Daniel still has "spells" of breathing fast but the fever has given us a brake. He cough at night chocking on his saliva.... he has a sore throat... sounds like laryngitis. They considered admitting him yesterday. However, looking at how much Daniel dislike being at the hospital and how he in enjoying coming home and taking into consideration some other factors such as how close we live to the the hospital. We concluded to not have Daniel admitted at this time. If we are worried about his condition we are to take him back to the emergency department and have the telephone number for the on-call hematologist/ oncologist. We will be seen again in the clinic on Thursday, April 2nd. This will be an all day affair. This is the day on which he will have his bone marrow tested for nasty things like leukemia. This morning Daniel enjoyed playing outside and just being a typical 20 month old with giggles and tantrums. Esther seems to be better. The antibiotics seem to be doing their job. She has not yet had another seizure. She just had one on the 10th of March (late at night) and on March 24th (given Daddy an ambulance ride as a birthday present!).Thank you for all your prayers and support. God is totally helping us through these challenging times and making the system work for us.Love,Roxanne

first visit to oncology/ hematology

Hi All, We are heading off to the onocolgy/ hematology clinic this morning for more blood work and hopefully some test results and unlikely but possibly another blood transfusion for Daniel.Many of you have asked how you can help? Meals, or home made goodies are always wlecomed and appreciated as things are pretty busy in the home and we are out at the hospital so much. When we are home the kids just want our attention the sick ones and the "not sick but need mommy too" ones. Visits are appreciated as well as it gets our minds thinking about things other then illness. One way you can help is simply by calling and talking to us.... somethings about what is happening with us as it helps to get it "off out chest"/ "out of our heads" or the best is to hear what is happening with you... or just make us laugh and feel normal that people are calling.... you are not bothering us by calling. We need anything that can resemble a sign of normalcy. other things you can do is prayer, pray , pray...and let us know if you get anything from those prayers. One of the possible things Daniel is facing as a diagnose is called TEC but it is a diagnose of exvlusion... meaning everything else has to be ruled out first.... here is a link to explain what TEC is....and is not....http://www.drgreene.com/21_808.html It is not sure that this is whatwe are dealing with but it is the most probable. Please keep in mind that there is different ways to count hemoglobins some count in with low number ex. 10 and other count them with high number... 100. Daniel visit to emerge on March 25th in the evening demonstrated that his hemoglobins were at 93 after the blood transfusion up from 69 that morning. Hurray.... today they will check to see how much hemoglobins are in the blood again to see where things are at. Daniel's body could be destroying hemoglobins as well as not producing many of them... hence the need for the test. Got to run to CHEO...love lots and thanks for everything...Roxanne"Give blood it saves lives!"
Hi all of your dear friends and family, Thanks you for all your prayers and support through out this day. We arrived at the onocology clinic a little before 9am. Daniel had more blood work done. We waited for some of the blood work to come back and then met the resident doctor. She had a crucifix and a medal of Mother Mary and Baby Jesus on her necklace.... She questioned us on all of Daniel's medical history and his overall health and being. It was very complete. A little while longer and another Docotr came in a great man I forget his name at this time.... but he was amazing. It turns out that Daniel's hemoglobins dropped from 74 yesterday afternoon to 69 this morning. A blood test has discovered that Daniel has very few new Hemoglobins which indicates that his bone marrow is not producing the proper amount of hemoglobins. He talks to us about the various possibilities of this. Including Leukimia. Daniel will be put under sedation for a bone marrow test next Thursday (April 2nd). This will test for nasty things like cancer. The doctors don't think it is leukimia but it could be so they are testing for it. Today, Daniel had many many many blood test done. Complete results form this will take a few weeks. The doctor says that some virus can actually decrease the bone marrow from producing the proper amount of hemoglobins. Daniel was tested for many of these virus today. Some of the virus that can cause this h

Daniel had more blood work done. We waited for some of the blood work to come back and then met the resident doctor. She had a crucifix and a medal of Mother Mary and Baby Jesus on her necklace.... She questioned us on all of Daniel's medical history and his overall health and being. It was very complete. A little while longer and another Docotr came in a great man I forget his name at this time.... but he was amazing. It turns out that Daniel's hemoglobins dropped from 74 yesterday afternoon to 69 this morning. A blood test has discovered that Daniel has very few new Hemoglobins which indicates that his bone marrow is not producing the proper amount of hemoglobins. He talks to us about the various possibilities of this. Including Leukimia. Daniel will be put under sedation for a bone marrow test next Thursday (April 2nd). This will test for nasty things like cancer. The doctors don't think it is leukimia but it could be so they are testing for it. Today, Daniel had many many many blood test done. Complete results form this will take a few weeks. The doctor says that some virus can actually decrease the bone marrow from producing the proper amount of hemoglobins. Daniel was tested for many of these virus today. Some of the virus that can cause this in the bone marrow have no test. Hence it gets disagnosed as TEC which means that Daniel will have to be monitored very closely and might need repeated blood transfusion over the course of several months but then will be fine. Because, Daniel was very lehargic this morning and his hemoglobins were at 69 and probably dropping he received his first blood transfusion. Which means being hooked up to an IV for 3 hours. I have never ever be so grateful that someone actually took the time to give blood. Thank you to all of you who in the past have done this. ... We will be going back to the onocology clinic on Friday morning for a 9:40 am appoitment for more blood work. Meaning to see how his Hemoglobins are in they increase, stayed the same or dropped. Then we will be going on Thursday, April 2nd at 8am for his bone marrow test for which they have to sedate him. Unfortunately, they are not able to do his MRI at the same time. Hence, my little guy will be under sedation in early april and then again in mid June. Please pray for him,... all of this is affecting all of us. Jacob is very stresed out. .. Thank you for your ongoing support.Will keep you posted.... with lots of love,Roxanne

Blood work and seizure in van

Hi All,
Just asking for prayers and giving more updates... We took all three children for blood work today.Daniel and Esther's were done at CHEO but we had to go to another Lab for Jacob because he was to old to have one of the specific test done at CHEO. (he had to be under two)So after CHEO we went to anotehr lab and did Jacob's. Then we went to buy Daddy's birthday Cake (Joey turned 32 today). I was not home two minutes the phone rings and it's our doctor demanding that the kids come in right away... appointment in 40 minutes. Ocne there we waitied our turn... nervously. Daniel's hemoglobin drop from 82 to 74 ... they are suppose to be 110-120. Esther's hemoglobbins raised from 92 to 99 yet white blood cell were high... she will be starting antibiotics.. as she has fever again. Daniel has an emergency appointment with an Hemoglobist at 9 am March 25th. The Doctor is DR. Johnson and we are meeting her at CHEO in 6W (the cancer ward)... that is a little scary!On the way home, Esther had a seizure in the van.... and was not recovering well so I called 911. The paramedics met us on the side of ROberston Rd. and Joey came to our rescue... JOey went with Esther becasue Daniel was very scared and just wanted his Maman. And the Dr. wanted me to watch Daniel for sings of going into shock because of the blood stuff. ...at 7:30 ish tonight Daniel's was trembleing a lo t9Not seizure just trembling... and his mounth area went blue for a while.... hence I brought him into emerge. Both kids were seen... we are stable enought to be home for a few hours and go in and see the doctor in the morning.... the specialist... Joey is coming with me , Thank God for understand employers.Please pray for us.... and Dr. Johnson. We are still awaiting more of the blood work. The Mono test came back negative for both Daniel and Esther. Thanks....God bless all of you,Roxanne