The Foundation for Children with Atypical HUS

We all have discussed our children's medical issues and that is a good thing. We need to be able to do that with knowledgable individuals and those who understand. However we rarely talk about regular parenting issues of such children. I'd number one like to offer my experiences in that direction. But more importantly I'd like everyone to bring to the fore front all those things that you are secretly anxious about with respect to raising your children. I know I had them and I still have them. I will probably die having them.

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My older daughter much of the time had a hard time with her sister being sick. My older daughter holds things inside and she is very sensitive. When Jessica was first diagnosed Angie was just about five years old. We were at first so caught up in the trauma that we had let her feelings slide. It was thankfully brought to our attention by her teacher. Her teacher had communicated to me that she was crying in class was there a reason. I responded immediately feeling guilty as heck. Between Angie's teacher and myself we decided that she should and could talk to the school couselor at least once a week. We of course discussed this with Angie and I explained to her that she may feel at times that she may not be able to talk to me but she could talk as many times as she felt necessary to the school counselor. The counselor and I then kept in touch and I updated her on events so she could address Angie with more foresight.

I think the thing that is most important is to realize that your kids are still normal kids. It's very difficult. I don't always see a lovely 21 year old in front of me who wants to make her mark in the world. Many a times I see the hospital, tubes, tests etc and not the girl who with courage faces all of this with as much of a positive attitude as possible.

We have always been honest and direct with both of our girls. I've always asked doctors and nurses to address Jessica directly as well as myself. I'd ask my questions and then I'd always ask her if she had questions. She'd usually decline to ask but I knew she was listening. When she was very little she would not look at the doctors. I always told them it was her way to cope but please address her anyway. Eventually she began to look at them and eventually she'd talk to me before hand and ask me to ask her questions. Now she will ask her questions. In the dialysis unit the nurses would get her involved in helping them to set up machines. Sometimes she would have to wait for me to get her for about a half hour and she would use that time to help the nurses. That got her knowing what lines and dialyzer she uses. Now she tells the techs and nurses what it is that she needs exactly. Up to this point she had me there to give her confidence and that was okay. Cause now I told her it's her and them and she has to speak up. I told her too that just because she's small in stature doesn't mean that her voice is small.

In school, I always had a notebook go back and forth with Jessica to her aide. If something was going on with her I'd communicate it in the note with instructions. Like you need to let the school nurse know this. Or we are expeciting a hospital stay, can we get work ahead and work on it at our pace. If you can get the teachers to plan ahead a little with you perhaps Nathan wouldn't miss as much. Also why not enlist the rest of the family to help with the school work. they can probably field his minor questions and point him in the right direction with his work. Also anything you do is an educational experience. When Jessica was learning addition and subtraction I'd use everything I could think of anywhere. When we would go to a restaurant for a meal on a Friday, I'd use the salt and pepper shakers and sugar as tools and we'd make a game of it. It usually involved my older daughter as well. I used to have to be in the car a lot with the two of them so we'd practice spelling words and meanings. I also worked part time so every bit of time get put to good use.

Have Nathan verify with the nurse or doctor during his monthly clinics what meds he takes and what dosages. Maybe if you try starting him on doing that, he'll carry it over to home and start doing for himself. You need to nudge them a little at a time with small steps.

Cheryl Christine Pallme Biermann said:
Colette, I'd love to hear your experiences with parenting, just general parenting, for example, how smooth or rough it was to get Jessica involved in her own care? Nathan has always helped with the pumps and watching out for nursing mistakes in the hospital, and we have just begun telling him, take your pills and then following up with that to make sure everything is taken. I've been wanting to get him in here to read some of the blogs and responses, but so far haven't done so.

It would be interesting to see the progression in school as well, Nathan misses so much, and we spend so much time on catching up that there is little time for enrichment.

Also, the seperation from the rest of family, we have a large family and the way that teachers, ect. have not said things so as "not to add anything else to our plate", has NOT been helpful, by the time you know there are issues, everyone is angry and upset and judging the other kids. I know it can't be just us, I talked to a woman in the hospital today whose child is in renal failure and two of her other children are now in BIG trouble. Maybe we all need to let caregivers of our healthy children know we need to stay informed and in charge, even if only remotely! I'm not only talking about when the patient is hospitalised, but even when you're at home.

Great idea to add this, thanks.
This is a far cry from what you ladies have been discussing above, but it's been on my mind a lot lately. Aiden is 2 now and is showing interest in using the potty. What are your experiences if any with potty training your little one who is on dialysis? Aiden says "I go peepee potty mama" and stands at the toilet and makes a "psssss" sound and then wants to flush it. I know he is imitating but can't help but wonder if it will be difficult/confusing to him to only be able to potty train him to go "poopoo" (as we say here in 2 year old land :) ) We try our hardest to treat Aiden as a normal 2 year old and he absolutely flourishes and is not behind in any areas developmentally, physically, etc so I think it's okay to start him now...just curious to know if you guys have any tips...... ( sorry if I'm rambling...it's late and SOMEBODy was a little Toot all day today! Wore his mama out!)
Christy - I'm the wrong person to ask - even though I should be the most relatable since we are just 'ahead' of you age-wise. But I'm of the late potty-training school. My daughter was almost 3 1/2 when she was potty trained - but that worked for me b/c she was honestly potty-trained (day and night panties) in about a day and with almost no accidents. So I just figured I'd follow the same path with Hyde. He does the same as Aiden - says he needs to go, etc. and we let him sit on the potty - and he's pooped (yes - language doesn't change in 3 yr old land by the way!) once or twice - but pure flukes I think. I think they'll do OK - I talked to a couple of parents at the hospital and they said their kids did OK - Is Aiden like Hyde as far as Hyde doesn't pee AT ALL - then I just keep asking if he has to go poopy - with him he wants to wear underwear - and I tell him he can't until he goes poopy on the potty. Anyway - I'm rambling here now - but in the Talbot house we are just kind of waiting - I'll let you know how it goes though b/c he turned 3 in July - so probably soon we'll be really pushing it around her ;-).

Christy said:
This is a far cry from what you ladies have been discussing above, but it's been on my mind a lot lately. Aiden is 2 now and is showing interest in using the potty. What are your experiences if any with potty training your little one who is on dialysis? Aiden says "I go peepee potty mama" and stands at the toilet and makes a "psssss" sound and then wants to flush it. I know he is imitating but can't help but wonder if it will be difficult/confusing to him to only be able to potty train him to go "poopoo" (as we say here in 2 year old land :) ) We try our hardest to treat Aiden as a normal 2 year old and he absolutely flourishes and is not behind in any areas developmentally, physically, etc so I think it's okay to start him now...just curious to know if you guys have any tips...... ( sorry if I'm rambling...it's late and SOMEBODy was a little Toot all day today! Wore his mama out!)
Yep, sister...same here....no pee pee...once every blue moon he will wake up with a semi-wet diaper but nothing consistent at all!:)

Phyllis Ann Talbot said:
Christy - I'm the wrong person to ask - even though I should be the most relatable since we are just 'ahead' of you age-wise. But I'm of the late potty-training school. My daughter was almost 3 1/2 when she was potty trained - but that worked for me b/c she was honestly potty-trained (day and night panties) in about a day and with almost no accidents. So I just figured I'd follow the same path with Hyde. He does the same as Aiden - says he needs to go, etc. and we let him sit on the potty - and he's pooped (yes - language doesn't change in 3 yr old land by the way!) once or twice - but pure flukes I think. I think they'll do OK - I talked to a couple of parents at the hospital and they said their kids did OK - Is Aiden like Hyde as far as Hyde doesn't pee AT ALL - then I just keep asking if he has to go poopy - with him he wants to wear underwear - and I tell him he can't until he goes poopy on the potty. Anyway - I'm rambling here now - but in the Talbot house we are just kind of waiting - I'll let you know how it goes though b/c he turned 3 in July - so probably soon we'll be really pushing it around her ;-).

Christy said:
This is a far cry from what you ladies have been discussing above, but it's been on my mind a lot lately. Aiden is 2 now and is showing interest in using the potty. What are your experiences if any with potty training your little one who is on dialysis? Aiden says "I go peepee potty mama" and stands at the toilet and makes a "psssss" sound and then wants to flush it. I know he is imitating but can't help but wonder if it will be difficult/confusing to him to only be able to potty train him to go "poopoo" (as we say here in 2 year old land :) ) We try our hardest to treat Aiden as a normal 2 year old and he absolutely flourishes and is not behind in any areas developmentally, physically, etc so I think it's okay to start him now...just curious to know if you guys have any tips...... ( sorry if I'm rambling...it's late and SOMEBODy was a little Toot all day today! Wore his mama out!)
Ladies,

My experience is that potty training takes a bit longer with a child on dialysis. Jessica got potty trained around 3. She was in the hospital though until she was 18-19-months old so I believe a lot of the delay had to do with that. I guess you just need a lot of patience. There will be accidents in big boy and girl underwear. Eventually they do associate the two things - potty and poop. Eventually they can figure out what they are feeling and where they have to go.

Christy said:
Yep, sister...same here....no pee pee...once every blue moon he will wake up with a semi-wet diaper but nothing consistent at all!:)

Phyllis Ann Talbot said:
Christy - I'm the wrong person to ask - even though I should be the most relatable since we are just 'ahead' of you age-wise. But I'm of the late potty-training school. My daughter was almost 3 1/2 when she was potty trained - but that worked for me b/c she was honestly potty-trained (day and night panties) in about a day and with almost no accidents. So I just figured I'd follow the same path with Hyde. He does the same as Aiden - says he needs to go, etc. and we let him sit on the potty - and he's pooped (yes - language doesn't change in 3 yr old land by the way!) once or twice - but pure flukes I think. I think they'll do OK - I talked to a couple of parents at the hospital and they said their kids did OK - Is Aiden like Hyde as far as Hyde doesn't pee AT ALL - then I just keep asking if he has to go poopy - with him he wants to wear underwear - and I tell him he can't until he goes poopy on the potty. Anyway - I'm rambling here now - but in the Talbot house we are just kind of waiting - I'll let you know how it goes though b/c he turned 3 in July - so probably soon we'll be really pushing it around her ;-).

Christy said:
This is a far cry from what you ladies have been discussing above, but it's been on my mind a lot lately. Aiden is 2 now and is showing interest in using the potty. What are your experiences if any with potty training your little one who is on dialysis? Aiden says "I go peepee potty mama" and stands at the toilet and makes a "psssss" sound and then wants to flush it. I know he is imitating but can't help but wonder if it will be difficult/confusing to him to only be able to potty train him to go "poopoo" (as we say here in 2 year old land :) ) We try our hardest to treat Aiden as a normal 2 year old and he absolutely flourishes and is not behind in any areas developmentally, physically, etc so I think it's okay to start him now...just curious to know if you guys have any tips...... ( sorry if I'm rambling...it's late and SOMEBODy was a little Toot all day today! Wore his mama out!)
Cheryl,

Yes I've experienced this more than a few times with Jessica. However I always remind her that school work comes first. She didn't always have the benefit of a tutor and many times it was me there to get her started. So I think that is great that Nathan has a teacher help. You also need to recognize that kids do need down time like we do. So if there's attitude about not watching tv maybe you could compromise by putting a time limit and then telling Nathan after that time you expect him to return to his work and complete what he needs to. Nathan is at an age where he's going to try you in every way as you know. He's no different than his older siblings. It's just he does have a more convenient excuse than they did. There are also times when they simply cannot function. When Jessica was truly sick feeling on treatment she just would sleep. Usually she has a hard time at the end of treatment with cramping and pressure drops. Try a compromise action. What are Nathan's goals? What does he enjoy doing? Sometimes reminding them that they have to focus sometimes on the big picture can get the motor going.

Cheryl Christine Pallme Biermann said:
Hi Colette, it's me Cheryl. Thought I would pick your brain about something that's been happening with Nathan lately. In the past, after his treatment for the horrible fungus that caused us to be on hemo was done, he usually did awesome with his dialysis. Then, not so awsome, reasons vary, the dialysis not working so great, change of seizure med, and real weight gain. So, he has been yucky, dropping bp (he's never too, low-just low for him 100-106). I fought like crazy to get teachers in there to help these kids, and now that we have them, he's always feeling bad. Not only that but they can only spend approx. an hour with him and he has volumes of undone work. When the teacher leaves, he always wants to watch t.v. I'm at the point that I know certain times he really does not feel well but sometimes I think he may just be trying to ditch his work. Today, he felt bad early (which is unusual, usually he feels bad later), then the teacher came and everyone agreed he was doing fine. When Adam, (the teacher), left, Nathan was "sick" again. Today he was angry with me for not letting him watch tv. But I thought if he was sick, he should rest and not watch television, so that is what we did. Did you ever have this experience-I don't know your circumstances-but if you suspected the ditching ploy, how did you handle it? It's so easy to fall so far behind, I'm reluctant to let him snow me! If this is what he is doing! You know???
It's been a long time and this is a general statement, but....

Christian was 3 months old when he started aHUS episodes... on PD at 1, transplant at 2, back on PD at 2.5.

He only 'made pee pee' for a few short months that I can remember.

He's 14 years old now and I must say that he has made every milestone in development a child needs to make. Some may have taken a little longer, some may have needed a little extra 'nudge' from mom or dad.

Honestly, I can't remember anything really out of whack. So I'm assuming since I don't have any recollection of any real issues, there was really no need to worry.

So, be at peace, free your mind, love on 'em, discipline 'em, they'll mature right through all the normal milestones with very little out of the ordinary.

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