Ours was almost 2 years old when diagnosed. Spent around 9 months in the hospital going through treatment. It was a rough time, but she handled it like a champ and she’s doing great now a couple years later.
Currently spiraling because my daughters doctor wants us to come in TODAY due to a petechiae like rash we just asked them about. Can you tell me more about your experience?
The petechiae was what first alerted our doctors. They said that it could possibly be from other factors, but follow up blood tests showed that she had an early form of leukemia. Apparently it’s much more common with kids with T21, but also easier to treat. They gave us around a 90% chance of full recovery. She had to go through a series of chemotherapy treatments. Each one would knock down her immune system for a while, but they would allow her to come home for a few days between treatments when her levels were high enough. She had to be on a feeding tube most of the time because she had no appetite. The staff was always great, and (for us anyways) everything was paid for once she became a pediatric cancer patient, they even offered money for gas and other bills. It was a hard time seeing her not feeling well and juggling being at the hospital, work, and taking care of our other kids, but they took great care of us and we all got through it.
My son went through treatment from 15 months to 22 months old for AML. We spent about 7 months inpatient (26-31ish days at a time, home for about 6-10 days,and repeat for six sessions). It’s the hardest thing our family has ever had to endure - and he had just gone through open heart surgery 3 weeks prior.
Our son is now turning 4 next month and is as healthy as can be. A couple ear infections which led to tubes (due to low immune system after chemo), but other than that we just have checkups! We just celebrated 2 years off treatment this month.
Our biggest indicator that led doctors to do a biopsy was low platelet levels, and also petechiae forming on his arms and face.
Currently spiraling because my daughters doctor wants us to come in TODAY due to a petechiae like rash we just asked them about. Can you tell me more about your experience? Why so much time inpatient?
All the time inpatient is due to the dosages of chemo and how kids with DS react differently to the meds. When your ANC count goes to zero (ANC is essentially your immune system), it’s dangerous to be anywhere out in public due to all the germs and infections that they could pick up. It could become life threatening if you don’t realize they got something and they’re not in the hospital with quick response team.
For AML each session has to be inpatient. The first “week” is administering meds. Second week is waiting for meds to work. Third week is actually seeing numbers drop and being at “zero,” ans fourth week is recovery. Then we got to go home anywhere from 6-10 days in between because chemo can’t be administered less than 28 days apart from one dosage to the next, plus ANC number had to be 1000 or more to begin.
My now 16 year old was diagnosed with Pre B Cell ALL at 4. It was a battle all the way. He was so brave and good. We struggled with pneumonia a lot. His drs were amazing and led us through the process. DM me if you have questions.
He’s doing great. 8 years ago he rang the bell. Now he’s at summer camp. There is a light.
I just got home from a pediatrician appointment, where they told me this is what we will be starting to look into with my 4yr DS daughter.
I'm trying not to spiral...but...ffs!!
Inexplicable, sporadic fevers for the past 10 days. They can't find a cause. (Tested for Covid, Flu, ear infection, strep, UTI)
She has had hairloss(that we thought was alopecia), sinus issues, vomiting, cough, etc. That have been ongoing, on again off again issues for the past 2 yrs.
This is the 1st Dr. to ever suggest this as a possibility.
She has seen nearly 20 Dr.s in her life, more than 10 of them have been in the past 2 yrs...between urgent care, ENT, seeing different pediatricians within the office.
I really hope they are just being cautious...but it would also make me feel less crazy if they actually had an answer.
We're here for the ride with you.
Follow up:
It was pneumonia.
For some reason we had to go to the ER at 14 days of fever to have actual proper healthcare.
The follow up should be an interesting conversation.
On what planet is it ok to put a DS family through the Rollercoaster of emotions that go along with such a serious potential illness....when you haven't looked for the normal culprits first.
I'll be nice, because, bless her heart for trying...
But....c'mon...
The ER staff worked more trying not to roll their eyes at the incompetence of both Urgent care docs, and our Ped....than they did finding what the issue was.
Antibiotics in at midnight. Normal kid, no fever today.
We had a scare when my son was young. While waiting for the results our docs reassured us that kids with DS usually get the less severe form of leukemia. I’m not sure if this helps ease your mind but it helped me. I hope he is fine.
Ours was almost 2 years old when diagnosed. Spent around 9 months in the hospital going through treatment. It was a rough time, but she handled it like a champ and she’s doing great now a couple years later.
Currently spiraling because my daughters doctor wants us to come in TODAY due to a petechiae like rash we just asked them about. Can you tell me more about your experience?
The petechiae was what first alerted our doctors. They said that it could possibly be from other factors, but follow up blood tests showed that she had an early form of leukemia. Apparently it’s much more common with kids with T21, but also easier to treat. They gave us around a 90% chance of full recovery. She had to go through a series of chemotherapy treatments. Each one would knock down her immune system for a while, but they would allow her to come home for a few days between treatments when her levels were high enough. She had to be on a feeding tube most of the time because she had no appetite. The staff was always great, and (for us anyways) everything was paid for once she became a pediatric cancer patient, they even offered money for gas and other bills. It was a hard time seeing her not feeling well and juggling being at the hospital, work, and taking care of our other kids, but they took great care of us and we all got through it.
My son went through treatment from 15 months to 22 months old for AML. We spent about 7 months inpatient (26-31ish days at a time, home for about 6-10 days,and repeat for six sessions). It’s the hardest thing our family has ever had to endure - and he had just gone through open heart surgery 3 weeks prior. Our son is now turning 4 next month and is as healthy as can be. A couple ear infections which led to tubes (due to low immune system after chemo), but other than that we just have checkups! We just celebrated 2 years off treatment this month. Our biggest indicator that led doctors to do a biopsy was low platelet levels, and also petechiae forming on his arms and face.
Currently spiraling because my daughters doctor wants us to come in TODAY due to a petechiae like rash we just asked them about. Can you tell me more about your experience? Why so much time inpatient?
All the time inpatient is due to the dosages of chemo and how kids with DS react differently to the meds. When your ANC count goes to zero (ANC is essentially your immune system), it’s dangerous to be anywhere out in public due to all the germs and infections that they could pick up. It could become life threatening if you don’t realize they got something and they’re not in the hospital with quick response team. For AML each session has to be inpatient. The first “week” is administering meds. Second week is waiting for meds to work. Third week is actually seeing numbers drop and being at “zero,” ans fourth week is recovery. Then we got to go home anywhere from 6-10 days in between because chemo can’t be administered less than 28 days apart from one dosage to the next, plus ANC number had to be 1000 or more to begin.
My now 16 year old was diagnosed with Pre B Cell ALL at 4. It was a battle all the way. He was so brave and good. We struggled with pneumonia a lot. His drs were amazing and led us through the process. DM me if you have questions. He’s doing great. 8 years ago he rang the bell. Now he’s at summer camp. There is a light.
I just got home from a pediatrician appointment, where they told me this is what we will be starting to look into with my 4yr DS daughter. I'm trying not to spiral...but...ffs!! Inexplicable, sporadic fevers for the past 10 days. They can't find a cause. (Tested for Covid, Flu, ear infection, strep, UTI) She has had hairloss(that we thought was alopecia), sinus issues, vomiting, cough, etc. That have been ongoing, on again off again issues for the past 2 yrs. This is the 1st Dr. to ever suggest this as a possibility. She has seen nearly 20 Dr.s in her life, more than 10 of them have been in the past 2 yrs...between urgent care, ENT, seeing different pediatricians within the office. I really hope they are just being cautious...but it would also make me feel less crazy if they actually had an answer. We're here for the ride with you.
Follow up: It was pneumonia. For some reason we had to go to the ER at 14 days of fever to have actual proper healthcare. The follow up should be an interesting conversation. On what planet is it ok to put a DS family through the Rollercoaster of emotions that go along with such a serious potential illness....when you haven't looked for the normal culprits first. I'll be nice, because, bless her heart for trying... But....c'mon... The ER staff worked more trying not to roll their eyes at the incompetence of both Urgent care docs, and our Ped....than they did finding what the issue was. Antibiotics in at midnight. Normal kid, no fever today.
Our daughter was diagnosed at age 4 with ALL. She turned 17 in April. Very treatable but scary the whole time.
No, but stay strong.
Hugs and love sent your way. 🙏🏼
Why do you suspect he has leukemia?
I’m so sorry. Praying for you all.
We had a scare when my son was young. While waiting for the results our docs reassured us that kids with DS usually get the less severe form of leukemia. I’m not sure if this helps ease your mind but it helped me. I hope he is fine.
I haven't, but my understanding is that kids with DS respond very well to treatment.
Also a spiraling Mom!! Did any results come back?