Daycare.com Forum

Go Back   Daycare.com Forum > Main Category > Daycare Center and Family Home Forum

Daycare Center and Family Home Forum Daycare Center and Family Home owners, Directors, Operators and Assistants should post and ask questions here.

Reply
 
Thread Tools Display Modes
  #1  
Old 01-30-2012, 07:21 AM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default Heartbroken and Not Sure What To Do

I need some advice/guidance/someone to calm me/tell me Im nuts/ I don't know - a list of a few things going through my head! This is the story in brief. So I have been caring for a family for the past 3 years. They were due to have a baby in December and then have 6 weeks maternity leave! So the baby would join its brother in daycare in January. Well the baby was born with very long fingers and toes, they thought he had extra cartilage and they were referred to a specialst in which took a couple weeks to get into to. Took him to the doctor who concluded that was not what was going on and reffered them to a different specialist. They saw this specialist the day before she had to return back to work. On his first day of daycare at drop off she informed me that they got bad news at his doctor appointment. He has a heart defect and a possible underlying syndrome. His aorta is stretched to two times the size that it should be and they are treating him with meds. He is the youngest child they have treated and the medication has only been out for 5 years. His condition is called aortic root enlargement. They have to take him back in in a few weeks to see if the dosage/medication is working. Also the underlying syndrome wont be figured out for 4-6 more weeks after they get the results back for the genetic testing. : ( I am completely heart broken for this family. I have been a complete basket case over all of this. I am having mixed emotions and have been on a complete rollercoaster, I can't even imagine what the mother, father and family is going through. I don't know what to do. I feel heartbroken and want to help, but at the same time I feel like this was completely dumped on me and I REALLY have my hands full as I am starting another infant mid Feb, have a 1 year old of my own with a total of 11 children I care for. I am completely nervous to care for him, I feel horrible for saying this, but its the truth! : ( I feel like right now it is a waiting game to see how everything unfolds, as far as whether his meds are doing the job, what the syndrome is going to entale.... AND currently they have been in the hospital for the past week and a half with RSV! : ( I really need some support and some help. I am just a mess over this and don't know if I am comming or going, please help.
Reply With Quote
  #2  
Old 01-30-2012, 07:26 AM
Springdaze's Avatar
Springdaze Springdaze is offline
Daycare.com Member
 
Join Date: Jun 2011
Posts: 526
Default

Poor little one! I would have to tell them that I wasnt qualified to watch a child with those conditions. I would think he would need to be watched my a nurse, especially because he's so young.
Reply With Quote
  #3  
Old 01-30-2012, 07:35 AM
mickey2's Avatar
mickey2 mickey2 is offline
Advanced Daycare.com Member
 
Join Date: Dec 2010
Location: Ontario Canada
Posts: 334
Default

Wow this is so sad. It must be so difficult for you. Having had this family for so long you get attached and grow to love them. I can understand the emotions you must be going through wanting to help however with so many issues this little guy needs special care.

So sorry for you and this family.
Reply With Quote
  #4  
Old 01-30-2012, 08:51 AM
Daycaremomof2's Avatar
Daycaremomof2 Daycaremomof2 is offline
Daycare.com Member
 
Join Date: Oct 2011
Location: California
Posts: 101
Default

Quote:
Originally Posted by chellenj View Post
Poor little one! I would have to tell them that I wasnt qualified to watch a child with those conditions. I would think he would need to be watched my a nurse, especially because he's so young.
I would have to agree. That is too large of a ratio to be caring for a child who will need special attention- any child with any type of condition needs someone who will have their eyes on them every second of the day. It is sad, but it is too much liability for you. You have to look out for yourself and your own family first.
Reply With Quote
  #5  
Old 01-30-2012, 10:55 AM
Ariana's Avatar
Ariana Ariana is online now
Advanced Daycare.com Member
 
Join Date: Jun 2011
Posts: 6,868
Default

Are they wanting you to take care of him right away or will they wait until he's more stable? I think if it were me I would try not to worry too much until his condition is more stable. Research as much as I could about the condition so I know what to expect and take it one day at a time. Sometimes things like this are no big deal once the child is stable and taking to meds appropriately. He may or may not need special care and at this point no one really knows.

Keeping the lines of communication open with the parents is a good way to assess the situation and perhaps getting some counselling if it's affecting you deeply.
Reply With Quote
  #6  
Old 01-30-2012, 11:01 AM
permanentvacation's Avatar
permanentvacation permanentvacation is offline
Advanced Daycare.com Member
 
Join Date: Jun 2011
Location: Maryland
Posts: 2,456
Default

If you don't feel comfortable watching the child, you need to let them know that. You might want to suggest that they find someone with less children in their care so they can focus more on their child with the special needs. There are a handfull of daycare providers who had been in the nursing field before going into daycare. The parents might be able to find someone with a nursing background in which that person would be better qualified to care for this particular child.
Reply With Quote
  #7  
Old 01-30-2012, 11:07 AM
Mary Poppins's Avatar
Mary Poppins Mary Poppins is offline
Daycare.com Member
 
Join Date: Jan 2012
Posts: 399
Default



How scary for the parents and for you!

I would be very uncomfortable giving care to him, too. So many "what if's"! I would just be honest with them though and tell them once he is fully stable with a note from the doctor you'd love to have him back. Unless of course this falls under discrimination which I'm not entirely sure of.

Perhaps some of our wiser members can weigh in on that...
Reply With Quote
  #8  
Old 01-30-2012, 11:12 AM
Ariana's Avatar
Ariana Ariana is online now
Advanced Daycare.com Member
 
Join Date: Jun 2011
Posts: 6,868
Default

This might be the syndrome he has:
http://en.wikipedia.org/wiki/Marfan_syndrome
Reply With Quote
  #9  
Old 01-30-2012, 11:27 AM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

Marfan syndrome is one of the many genetic syndromes they are testing for, but definately at the top of the list due to the heart defect he has which goes along with Marfan syndrome. I have googled and researched a ton, but it is difficult with this type of heart defect and if indeed it is Marfan, most people don't catch it until later on in life, so everything I am finding is nothing related to infants.
Reply With Quote
  #10  
Old 01-30-2012, 11:30 AM
Sugar Magnolia's Avatar
Sugar Magnolia Sugar Magnolia is offline
Blossoms Blooming
 
Join Date: Apr 2011
Location: Where the wind goes.....
Posts: 2,379
Default

Ariana is correct. It sure is Marfans, ib have this syndrome as well. It can be mild to severe. I am very tall, have very long fingers, my arm span is 2 inches longer than my height. I also have heart issues in the form of a mitral valve prolapse. My aorta is mildly distended. It is usually worse in males. It is genetic. My father had it and died at the age of 29. I am 43. I may need a valve replaced, I see a cardiologist yearly . This syndrome is only a death sentence when it is undetected. I hope this baby will be ok. Take a deep breath and try to relax.
Reply With Quote
  #11  
Old 01-30-2012, 11:36 AM
Countrygal's Avatar
Countrygal Countrygal is offline
Advanced Daycare.com Member
 
Join Date: Aug 2011
Location: Wisconsin
Posts: 981
Default

I am so sorry for everything you and the family are and will be going through! My prayers and thoughts are with you during this!
Reply With Quote
  #12  
Old 01-30-2012, 11:38 AM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

Sugar Magnolia,
I would LOVE to talk to you more about this. I am trying to figure out if daycare is the best decision for this child and if he will be ok here. I do know that earlier you detect it the better. I am pretty sure he has it severe, but that is my guess looking at the many symptoms he has. The geneticist said that yep he can come to daycare, but for my assurance and my sanity I need to know that is a good decision and doesn't put me in a very risky situation. Please help and share any info you can regarding this.....
Reply With Quote
  #13  
Old 01-30-2012, 12:01 PM
Sugar Magnolia's Avatar
Sugar Magnolia Sugar Magnolia is offline
Blossoms Blooming
 
Join Date: Apr 2011
Location: Where the wind goes.....
Posts: 2,379
Default

J J : this baby sounds like a severe case. I did not know I had it until I was 8. I was freakishly task tall and skinny, but it did not effect my life too much. I am also hard of hearing but that may or may not be related to marfans. It can limit him later in life with sports and other activities. The aorta is the BIG concern. If they caught it this early, it is likely pretty severe. I think he will not need special care, but it does seem like you have a lot of kids. Do you have anassistant? You can pm me if you want to talk more. The only real problem I had as a child was teasing. I was on ski team and I did everything I wanted to. But I have a mild case. I wouldn't say "its nothing", because after all, I do have a dead father. He did not know he had it and he was in San Francisco from 1968 until his death in 72, so they believe somelifestyle choices may have contributed. (yes , I mean drugs). This baby should be ok.
Reply With Quote
  #14  
Old 01-30-2012, 03:44 PM
nannyde's Avatar
nannyde nannyde is offline
All powerful, all knowing daycare whisperer
 
Join Date: Mar 2010
Location: Des Moines
Posts: 7,244
Default

Quote:
Originally Posted by JJPlaycare View Post
The geneticist said that yep he can come to daycare, but for my assurance and my sanity I need to know that is a good decision and doesn't put me in a very risky situation. Please help and share any info you can regarding this.....
Did you get that in writing from the geneticist or is the parent saying he said that?

You may be in the middle of a deal where the geneticist is thinking that the infants risk isn't different in child care than in parental care BUT that doesn't mean that the infant doesn't pose a risk to you if you do not properly care/supervise to the level HE needs. It may not increase the infants risk but it sure may increase your liability.

Methinks this was either a quick comment to them in passing or not well thought out from YOUR prospective.
Reply With Quote
  #15  
Old 01-30-2012, 07:59 PM
MarinaVanessa's Avatar
MarinaVanessa MarinaVanessa is offline
Family Childcare Home
 
Join Date: Jan 2010
Location: Ventura County, CA
Posts: 7,200
Default

Quote:
Originally Posted by nannyde View Post

Methinks this was either a quick comment to them in passing or not well thought out from YOUR prospective.
I have to agree here. Who knows? Maybe I'm wrong however I would want a note from the doctor as to how the child is to be cared for properly and I know I'd like the physician to know the child:adult ratio in my DC.

I'd want to know specifics of what possible complications and scenarios the child could encounter while at home and what the protocol is if something bad were to happen. Then think about all of that and add 11 other kids to the mix. Only then can you make and informed and educated decision as to whether or not you are up for the job.

If you decide to take the child on I'd make copies of the physician's note and information that he gives you and (if you're licensed or registered) I'd send those along with a written note from the parent which says in their own words that they understand everything that the doctor said (including any medical emergencies that you can be faced with) and send them to licensing. Keep the originals in the child's fiile and update is as the parents find out more. This is so that if something does happen (knock on wood that nothing does) at least you are covered and the parents can't say that it was because of something you did or failed to do.
__________________
Daycare Ninja, CA
Helping Hands Childcare
Reply With Quote
  #16  
Old 01-30-2012, 10:20 PM
3kidzmama's Avatar
3kidzmama 3kidzmama is offline
Daycare.com Member
 
Join Date: Feb 2011
Location: southern USA
Posts: 155
Default

Is there any type of medical Childcare facility for children with health problems where you live? If so, I would contact them and then provide the parents with this facility as an alternate resource. They would be better equipped to care for this child. There is a facility in my area that is operated by the children's hospital in our state. This is the type of facility that I would recommend to the parents for Childcare. Hope this helps! Praying for you, the family and the baby!
Reply With Quote
  #17  
Old 01-31-2012, 07:10 AM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

I have requested all of the above info frrom the parents. I have talked to my liccensor who is brand new and right out of college. I then contacted our nieghboring county which iis bigger and has a more experienced licensor. The syndrome is still not confirmeed and wont be for a few more weeks. The heart condition is being treated with medicaation and they will need to go in for several apts. to watch the aorta and its size closely. I also told her she needed to talk and bring something in writing from his peditrcian as well as from the geneticisAll of this is new and health stuff I have never dealt with or heard of. I have been on a rollercoaster of emotions and what the best decision for the baby, myself and the rest of the kids would be. I am nervous to care for him, I couldnt live with myself if something happened, I dont think it would be fair or a healthy decision for the child to come here. I however am vert scared of thr discrimination part of this and dont exact ly know what to say other than to be honest and tell her that I am not qualified to care for her child and express my concerns andkeep making it about the child because that is the truth and the main concern here. I thank you for all of your help with this, but I think for now I have decided that all of my attachment and emotions and heartbreak of this situation needs to be set aside and I need to let reality surface and do whats best for the child and helping his parents get him the care he needs and deserves.
Reply With Quote
  #18  
Old 02-02-2012, 12:31 PM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

I went and talked to the parents last night at their house and explained to them that I am not qualified to care for their child and that there are better more suitibable places and people out there that would be a better fit for their child and would be better, more experienced and more qualified to provide the care their child needs. Mom is very sad, but understanding. Dad is not happy and very frusterated and grasping for straws..... I agreed to talk to their doctors to see if that would change things, but explained that I didn't think it would change what I have decided and that I am only doing what in my opinion is best for the child. It went exactly how I thought it would. I completely understand all of their emotions as I have plenty of my own, but have come to realize that sometimes emotions have to be set aside and reality has to take ahold. The syndrome (which is still undetermined) is not my major concern it is the heart condition and it is my job to make sure every child here is recieving the care that they deserve and need. If I don't feel qualified or comfortable caring the a child then they can't recieve everything they deserve and need. I ultimately want what is best for this child and know in my heart and my head that I am not the answer. I do have another question just so I can use this in the future as well, but what is the time frame you use when a child is diagnosed with RSV before you let them reenter back into daycare?
Reply With Quote
  #19  
Old 02-03-2012, 09:52 AM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

So the childs cardiologist called me back and assured me that he would be just fine in childcare. I was able to explain to her how many children I care for and our activity level. She went on to tell me that they are treating his heart with meds now to prevent problems in adulthood. She said that he wouldn't need special care or extra attention because of it. His syndrome is still undetermined. As far as the RSV she said it is prevalent and you can't tell what it will or will not do as far as lasting effects on a child. His heart condition alone does not put him at any sort of risk of getting sick more often. Does this change your minds on whether you would take this child or not?
Reply With Quote
  #20  
Old 02-03-2012, 10:10 AM
Blackcat31's Avatar
Blackcat31 Blackcat31 is offline
 
Join Date: Oct 2010
Posts: 16,983
Default

Quote:
Originally Posted by JJPlaycare View Post
So the childs cardiologist called me back and assured me that he would be just fine in childcare. I was able to explain to her how many children I care for and our activity level. She went on to tell me that they are treating his heart with meds now to prevent problems in adulthood. She said that he wouldn't need special care or extra attention because of it. His syndrome is still undetermined. As far as the RSV she said it is prevalent and you can't tell what it will or will not do as far as lasting effects on a child. His heart condition alone does not put him at any sort of risk of getting sick more often. Does this change your minds on whether you would take this child or not?
I guess I can't answer about whether or not this would change my mind about caring for him but I did want to say that I am glad to hear that you were able to talk directly with the cardiologist.

I guess the info can't get any clearer than directly from the person who would know right?
Reply With Quote
  #21  
Old 02-03-2012, 01:18 PM
itlw8's Avatar
itlw8 itlw8 is offline
Daycare.com Member
 
Join Date: Jan 2012
Location: Missouri
Posts: 2,199
Default

I would take the child. At this stage caring for him is no different than any other infant.

And if something else comes along you just deal with it.

Truthfully family childcare is one of the best placements for children with special needs or special medical needs. Why? because of one consistant provider.

I think back to my special friend that had a bleed on the brain at birth. Yes it was extra work but I know I made a difference in his life.
Reply With Quote
  #22  
Old 02-03-2012, 01:20 PM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

The syndromes they are testing him for are Marfans and Loeys Dietz.
Reply With Quote
  #23  
Old 02-20-2012, 01:01 PM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

So we came to the agreement that until things were set up with a clear plan of care they would remain out of care. We decided 2 weeks ago that a start up date for them would be Feb 28. By that day they would know the syndrome and have a pretty good care plan set up. We decided to do a 2 week trial period to see if it is going to be a good fit and I can provide and feel comfortable caring for him. I talked to the cardiologist as well who reassured me that he would be just fine in daycare and that they were treating him with meds now to prevent adulthood issues. She said he wouldn't need any special care from me and there wouldn't be a problem. The parents are going to have to bring him into appointments probably monthly to monitor his aorta which is twice the size that it should be. The medications slows his heart rate, which in turn slows his blood flow to stop the stretching of the aorta. All would be good at daycare and for me and they were taking all these precautions to prevent later adulthood problems is what she told me!
So last Monday he had an appointment and they declared the syndrome was indeed Marfans. They basically were told that no two people are alike with Marfans, so it is going to be a waiting game to watch how he develops to see if or when he needs anything regarding the syndrome.
Last Wed. I get a text that his echo gram came back and showed a little more stretching of his aorta and now he has a leaky valve and if your valve is leaking your heart is leaking. She said no big deal just something we need to keep monitoring.
After talking to the cardiologist I was feeling quite reassured and felt that this was something I could do, but now I am back to feeling like no this is a big deal and back to all my original emotions and now I am questioning what the cardiologist said......
Reply With Quote
  #24  
Old 02-20-2012, 01:17 PM
MarinaVanessa's Avatar
MarinaVanessa MarinaVanessa is offline
Family Childcare Home
 
Join Date: Jan 2010
Location: Ventura County, CA
Posts: 7,200
Default

Only you know what you alone are capable of handling. If you think that you'll be a complete nervous wreck when this child comes to your DC then maybe you just simply say that. It looks to me like you have handled everything very well and have done extensive research. The only thing that I would require before the infant starts is to have the cardiologist write everything that he told you down. Everything in writing.

Have the parents create that plan of action for you which they will sign which will include everything that could possibly happen during daycare hours (aorta rupturing etc) and have them sign that they understand that this could very possibly be a reality. At least that way you are protected legally. The parents are pretty much saying that they understand that something could possibly happen at any time and at least the liability portion of this issue doesn't weigh on you.

Other than that, if the cardiologist has ensured you that the infant won't need additional attention than any other infant then I personally wouldn't see any reason to say no. If I woudn't need any additional staff, time or equipment and I was given everything in writing I'd have a hard time finding a reason to say no. But that's just me. What do YOU feel? Because that's what's important.
__________________
Daycare Ninja, CA
Helping Hands Childcare
Reply With Quote
  #25  
Old 02-20-2012, 01:20 PM
Daycare Diva's Avatar
Daycare Diva Daycare Diva is offline
Daycare.com Member
 
Join Date: Sep 2011
Location: Virginia
Posts: 45
Default

If your heart is leaking blood how can that not be a big deal? What happens when he gets upset and cries.? For me anything dealing with the heart is a scary situation.
Reply With Quote
  #26  
Old 02-20-2012, 01:20 PM
Blackcat31's Avatar
Blackcat31 Blackcat31 is offline
 
Join Date: Oct 2010
Posts: 16,983
Default

Honestly, if I were uncomfortable in any way, I would just decline to provide services for that reason. I would say that I didn't feel equipped to manage his care.

I know it sounds as though there is no risk and I am not arguing that there is or isn't....just that if YOU don't feel comfortable, then you shouldn't do it at all.

That is a lot of stress and I know I too, would be so worried all the time. What if this? What if that? etc etc etc....
Reply With Quote
  #27  
Old 02-20-2012, 01:29 PM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

I just feel that the family is viewing this as "not a big deal". The cardiologist was VERY reassuring in everything she said, but then a week later "oh there is more stretching and oh now we have a leaky valve!" I thought we were treating him for adulthood issues like she said and now here we are a week later with new worsened conditions! Which in turn tells me that they don't have everything figured out like she said!! I have told them I don't feel comfortable and all of it. I agreed to talk to the cardiologist which after talking to her changed my mind a little bit, but now after the worsened state she texted me and said in there "no big deal", "just a little something to monitor", "should be fine" I am back to feeling overwhelmed again and now I feel stuck because I agreed to the 2 week trial period! I guess at the start of the 2 weeks I will say this is your 2 week notice, cause I don't think I can mentally handle this!!
Reply With Quote
  #28  
Old 02-20-2012, 01:38 PM
MarinaVanessa's Avatar
MarinaVanessa MarinaVanessa is offline
Family Childcare Home
 
Join Date: Jan 2010
Location: Ventura County, CA
Posts: 7,200
Default

Well the beauty of the 2 week trial period is that during that time either of you can cancel childcare at any tome without notice. If you don't even want to begin care then just say so. If you want to try it for 2 weeks then do it and know that at least you have until day #14 to cancel the arrangement with no notice. If you do okay and want to keep trying it out after the 2 weeks you can also always change your mind and give them 2 weeks notice. Just remember that a 2 week trial period is exactly that, a trial period. No committment, no termination notice, nothing. You don't have to give notice of termination during this time. You can tell them on day #3 "You know what, it just isn't working for me. This is your last day."
__________________
Daycare Ninja, CA
Helping Hands Childcare
Reply With Quote
  #29  
Old 02-20-2012, 01:42 PM
Blackcat31's Avatar
Blackcat31 Blackcat31 is offline
 
Join Date: Oct 2010
Posts: 16,983
Default

Quote:
Originally Posted by JJPlaycare View Post
I just feel that the family is viewing this as "not a big deal". The cardiologist was VERY reassuring in everything she said, but then a week later "oh there is more stretching and oh now we have a leaky valve!" I thought we were treating him for adulthood issues like she said and now here we are a week later with new worsened conditions! Which in turn tells me that they don't have everything figured out like she said!! I have told them I don't feel comfortable and all of it. I agreed to talk to the cardiologist which after talking to her changed my mind a little bit, but now after the worsened state she texted me and said in there "no big deal", "just a little something to monitor", "should be fine" I am back to feeling overwhelmed again and now I feel stuck because I agreed to the 2 week trial period! I guess at the start of the 2 weeks I will say this is your 2 week notice, cause I don't think I can mentally handle this!!
Since they already know what it is (Marfans).....do YOU have a family physician that can give you advice about the condition itself?

Maybe your own doctor could give you some unbiased information and/or advice. I don't mean to divulge any personal details or break confidentiality, just ask him in general what he thinks the risks (if any) there are?

Kind of like a second opinion.

Because the parents keep saying it is no big deal, do you feel like they could be being less than completely honest with you?
Reply With Quote
  #30  
Old 02-20-2012, 02:00 PM
JJPlaycare's Avatar
JJPlaycare JJPlaycare is offline
Daycare.com Member
 
Join Date: Apr 2010
Location: Green Isle, MN
Posts: 292
Default

I honestly feel like they just don't know. Its not a question of being honest or not. I have done my research on the heart condition as well as the syndrome. They have not and were honest that they havent researched about the syndrome because they wanted to get a diagnosis first before looking into the syndrome. After talking to the cardiologist myself I think she is the one making them feel and talking about it like its no big deal, because she made me feel that way because she said "they are treating him now to prevent adulthood issues" however I research online on medical worthy pages, his heart has worsened and now I am feeling that she isn't making it seem or sound like a big deal, but indeed it is. I am unsure why she is being so mild about it with the parents as well as me, but I think that is why the parents are acting the way they are and its not a question of being honest.
Reply With Quote
  #31  
Old 02-20-2012, 02:07 PM
Blackcat31's Avatar
Blackcat31 Blackcat31 is offline
 
Join Date: Oct 2010
Posts: 16,983
Default

Quote:
Originally Posted by JJPlaycare View Post
I honestly feel like they just don't know. Its not a question of being honest or not. I have done my research on the heart condition as well as the syndrome. They have not and were honest that they havent researched about the syndrome because they wanted to get a diagnosis first before looking into the syndrome. After talking to the cardiologist myself I think she is the one making them feel and talking about it like its no big deal, because she made me feel that way because she said "they are treating him now to prevent adulthood issues" however I research online on medical worthy pages, his heart has worsened and now I am feeling that she isn't making it seem or sound like a big deal, but indeed it is. I am unsure why she is being so mild about it with the parents as well as me, but I think that is why the parents are acting the way they are and its not a question of being honest.
Oh, I gottcha... I wasn't understanding who it was that was making it seem like "not such a big deal". Hmmm, I wonder why the cardiologist would present it that way. I would think that any type of stress or crying or anxiety or a wole bunch of things would or could make his aorta stretch more or at least play a part in effecting it somehow.

I wish I had some better advice for you. This whole situation is sad and I know if I were in your shoes would be just as conflicted about it as you are.

Maybe the best thing to do, is provide the 2 weeks trial period and then just not do it anymore. I KNOW that is the route I would take. I just wouldn't be able to handle the what ifs....
Reply With Quote
  #32  
Old 02-20-2012, 02:46 PM
nannyde's Avatar
nannyde nannyde is offline
All powerful, all knowing daycare whisperer
 
Join Date: Mar 2010
Location: Des Moines
Posts: 7,244
Default

Quote:
Originally Posted by JJPlaycare View Post
I honestly feel like they just don't know. Its not a question of being honest or not. I have done my research on the heart condition as well as the syndrome. They have not and were honest that they havent researched about the syndrome because they wanted to get a diagnosis first before looking into the syndrome. After talking to the cardiologist myself I think she is the one making them feel and talking about it like its no big deal, because she made me feel that way because she said "they are treating him now to prevent adulthood issues" however I research online on medical worthy pages, his heart has worsened and now I am feeling that she isn't making it seem or sound like a big deal, but indeed it is. I am unsure why she is being so mild about it with the parents as well as me, but I think that is why the parents are acting the way they are and its not a question of being honest.
I don't know JJ

I got a feeling that their downplaying this is because they want him enrolled as a regular child not a special needs child. If it's "no big deal" then you have no more liability than any other kid.

It just feels wrong to me. It feels like they are trying to get you to take care of him with the knowledge that he is a special needs child but when the actual care of him comes into play they want you to just charge as a regular kid.

I will be totally honest with you and tell you that my first discussion with the cardiologist would be this worse case scenario: Can his heart withstand long bouts of extreme crying? The doctor needs to understand that he won't have an adult to regulate by action his crying.
Reply With Quote
  #33  
Old 02-20-2012, 03:07 PM
Cat Herder's Avatar
Cat Herder Cat Herder is offline
Advanced Daycare.com Member
 
Join Date: Dec 2010
Posts: 9,985
Default

This should answer some questions. http://www.marfan.org/cms/uploaded_f...20in%20mfs.pdf

My Training and understanding is such that they won't know how severe the disease process is until full growth is obtained. Aortic Dissection is rare during the pediatric phase of the disease, so they don't know of any true preventative care plans.

If the disease progresses fast enough for a true aortic tear/rupture there is really not much that can be done barring living in a surgical ward with a dedicated 24/7 team. Even then, the chances are low.

It (dissection) is simply so rare in young children, they don't limit activities or participation much at all. Just common sense stuff we should be doing anyway... I hope it helps. It is one of those difficult/touchy decisions.

Basically you take a child with the understanding they may die while in your care OR they may die at 80. It can be pretty scary.
__________________
- Unless otherwise stated, all my posts are personal opinion and worth what you paid for them.
Reply With Quote
Reply

Tags
aortic root enlargement, illness, liability, marfan syndrome, maternity leave, overwhelmed, special needs

Thread Tools
Display Modes

Posting Rules
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 01:14 AM.



Daycare.com         Find A Daycare         List Your Daycare         Toys & Products                 About Us

Daycare.com
Please read our Disclaimer before continuing.

Topics pertain mainly to the following States:

Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware District of Columbia Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada New Hampshire New Jersey New Mexico New York North Carolina North Dakota Ohio Oklahoma Oregon Pennsylvania Rhode Island South Carolina South Dakota Tennessee Texas Utah Vermont Virginia Washington West Virginia Wisconsin Wyoming