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Discussion Starter · #1 ·
<p>I've posted here many times about being at a difficult place in my marriage, trying to figure out if things can be improved or if I should leave.</p>
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<p>This post isn't about that long term, bigger issue, but about something more immediate involving one of our children. DS has a swallowing disorder and sees a variety of specialists. He aspirates and has his liquids thickened to prevent this. Recently DS has made a lot of progress in what he can eat, but his swallowing specialist and SLP still hear evidence of aspiration when they visit. They say we should still thicken his liquids. The plan is that when they no longer hear evidence of aspiration (coughing, congestion, different voice after eating and drinking) they will do a swallow study to make sure he's not aspirating, then we can stop thickening.</p>
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<p>Recently DH has decided that based on DS's increased swallowing ability, he no longer needs his liquids thickened and has stopped thickening them. DH says he doesn't hear coughing when he drinks; I've pointed out that aspiration 1) can be silent, and 2) isn't necessarily on every swallow, and 3) still a big risk according to highly trained professionals. DH still gives him thin liquids.</p>
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<p>So now I'm wondering where to go next. DH looks after the kids while I'm at work (PT) so I don't have complete control over what DS drinks. If DS aspirates enough he will get pneumonia (he had pneumonia five times before we found out he was aspirating). I know we're not going to agree on every parenting issue, but this is a big one.</p>
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<p>Anyone deal with differing medical approaches? I think another swallow study would prove that he still needs thickening, but it's a big deal for his specialist to set up, only to convince DH to do what they have already said is necessary.</p>
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<p>****** Update, March 14******</p>
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<p>I was really hoping I'd never have to write this update. DH has slipped and isn't always thickening the liquids, or thickening them enough, and is not following other advice related to DS's condition.  He even told me that the medical professionals are wrong, that DS has outgrown his swallowing problem and has an alternative hypothesis for all his symptoms.</p>
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<p>This just came to a head this weekend and I have an appointment with DS's case worker to lay it all out for her. She's a mandated reporter and might call CPS on us, or she might have another way of dealing with this. All I know is that I'm not handling this by myself and I need help. I can't just get up and go, it's just too complicated, but I'm supervising DS all the time now, and will do so until I can meet with his caseworker.</p>
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<p>I'll let you know what happens, but I have a feeling the next few days could be very tough around here.</p>
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<p>DS is currently healthy, though, Hooray for that.</p>
 

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<p>umm seriously he is endangering you're child! A lot worse things can happen when you aspirate besides pnemonia.</p>
<p>This is NEGLECT he i neglecting what is medically necessary for you're child.</p>
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<p>I'm not sure what you could do about it...but this is serious. DH can't just disregard you're sons special needs. I would not leave him with him alone..maybe you should call CPS on him yourself? I have no idea but you need to do something and drastically..</p>
 

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<p>This sounds a bit scorched-earth, but I'd be contacting the medical practitioners who see your DS and (a) getting this documented and (b) (more important) getting advice or contact info for someone to intervene appropriately.  Hospital social worker, perhaps, if this is a practice with hospital privileges, or something.  But I'd call the people who treat your DS for help.</p>
 

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<p>This is a big deal and it is medical neglect.  I would ask the therapists what they think.  They may report you but that would show that your dh is being neglectful and you are making the right decisions.  Will he do it to humor you until a study can be arranged?  I hate to say it but this easily documented situation may be helpful to you since you mentioned that his public persona makes it difficult to show his parenting issues.</p>
 

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<p><br>
I thought this thread was going to be about vaxes, which are at least contriversial. What is his argument for skipping the thickening? Is there some risk/downside to thickening liquids?</p>
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<p>Can you have the doctor's talk to your husband again? I would at least look into finding another caregiver in the next few weeks while you figure this out.</p>
<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>PoppyMama</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues#post_16145441"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>This is a big deal and it is medical neglect.  I would ask the therapists what they think.  They may report you but that would show that your dh is being neglectful and you are making the right decisions.  Will he do it to humor you until a study can be arranged?  I hate to say it but this easily documented situation may be helpful to you since you mentioned that his public persona makes it difficult to show his parenting issues.</p>
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<br><br><div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>MariaMadly</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues#post_16145424"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>This sounds a bit scorched-earth, but I'd be contacting the medical practitioners who see your DS and (a) getting this documented and (b) (more important) getting advice or contact info for someone to intervene appropriately.  Hospital social worker, perhaps, if this is a practice with hospital privileges, or something.  But I'd call the people who treat your DS for help.</p>
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<br><br><p>I agree. This isn't about "different approaches"; he seems to be arbitrarily stopping treatment. It is not as if there is a risk in this treatment and he is erring on the side of caution, he just decided to stop a benign treatment that is working at significant risk to your child.</p>
 

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Discussion Starter · #8 ·
<p><br>
 </p>
<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>sosurreal09</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues#post_16145373"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>umm seriously he is endangering you're child! A lot worse things can happen when you aspirate besides pnemonia.</p>
<p>This is NEGLECT he i neglecting what is medically necessary for you're child.</p>
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<p>I'm not sure what you could do about it...but this is serious. DH can't just disregard you're sons special needs. I would not leave him with him alone..maybe you should call CPS on him yourself? I have no idea but you need to do something and drastically..</p>
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<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>MariaMadly</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues#post_16145424"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>This sounds a bit scorched-earth, but I'd be contacting the medical practitioners who see your DS and (a) getting this documented and (b) (more important) getting advice or contact info for someone to intervene appropriately.  Hospital social worker, perhaps, if this is a practice with hospital privileges, or something.  But I'd call the people who treat your DS for help.</p>
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<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>PoppyMama</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues#post_16145441"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>This is a big deal and it is medical neglect.  I would ask the therapists what they think.  They may report you but that would show that your dh is being neglectful and you are making the right decisions.  Will he do it to humor you until a study can be arranged?  I hate to say it but this easily documented situation may be helpful to you since you mentioned that his public persona makes it difficult to show his parenting issues.</p>
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<br><br><p>Thanks for your replies. I'm of the same thought, that it's not just a different approach but very serious, but sometimes I need outside perspectives to help me think clearly. He is so calm and confident and I'm always hearing what a great dad he must be that it's hard to trust myself sometimes.</p>
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<p>I'll tell him it could be seen as medical neglect and see if that has any effect on him. If not, I'll mention it to his SLP/case manager who is coming Monday. I'm not working between now and then, so I can do all the liquids.</p>
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<div class="quote-block">Originally Posted by <strong>texmati</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues#post_16145629"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p><br>
I thought this thread was going to be about vaxes, which are at least contriversial. What is his argument for skipping the thickening? Is there some risk/downside to thickening liquids?</p>
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<p>Can you have the doctor's talk to your husband again? I would at least look into finding another caregiver in the next few weeks while you figure this out.</p>
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<p>His argument is that DS is making so much progress, and he really is. He has no response when I point out the coughing, though. My guess, knowing DH, is that denial is a huge force in all of this and he truly believes DS doesn't aspirate any more. Denial is strong enough to overlook all sorts of conflicting information. DH once told DS's PT that DS could ride a scooter (the kind you ride on standing up, which out super-athletic 4 year old can barely do yet). DS has PT for low muscle tone and <em>cannot</em> ride a scooter, but he can push it while he walks next to it. This, in DH's mind, equates to riding a scooter, so he bragged about it to the PT. (His case manager now insists all DS's therapy sessions of any kind are with me rather than DH. I didn't ask why, I figured it was awkward enough for her to make that request and chose not to make the conversation even more uncomfortable for her, but I'm guessing they get a more accurate picture of what he's doing from me.)</p>
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<p>I can't figure out how to get another caregiver, we have no money for child care and minimal family help (3 of 4 grandparents are overseas, the 4th is looking after his own elderly parent.)<br>
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Does he go to the doctor appointments too? I know you said you have to go for whatever reason from the case manager, but he should go too. For my DH, hearing it straight from the doctor really helps him to "get it". It seems silly that it should have to be that way, to me if he tells me the doctor said something, I believe him fully and it is just like the doctor said it, but it isn't that way for him. It isn't that he doesn't believe me, it just doesn't hit him the same way.<br><br>
Also, I would talk again to your DH and celebrate the progress your child has made but do whatever you can to convey that while there is so much progress, he still has more to go and aspiration is very dangerous. Ask him if he wants to set up the swallowing study now. If not, then he should at least call and talk to the doctors and better go in and see them in person and talk to them. Let them be the "bad guys" if he just isn't getting it from you. Other things that might work, relate it to someone he would listen to, maybe his mechanic with his car or his personal doctor/dentist with himself. These are paid professionals and you pay them for a reason and it makes no sense to disregard their medical advice, you wouldn't drive your car if your mechanic told you it was damaged and driving would damage it further? Something like that. Good luck but yeah, you definitely are right to be worried here!
 

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<p>I would set up the swallow test ASAP and ask DH to thicken the food till then. </p>
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<p>If necessary, you can leave pre-thickened food for DH to serve to him.</p>
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<p>If he will not serve pre-thickenned food, you should not leave your son home with DH. Pneumonia is nothing to mess around with - prevent it if you can.  I am not above telling my DH he needs to thicken the food or I will quit my job and ensure it is done.  The thought of loss of income might help him to cooperate.   </p>
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<p>He may be in denial, he may have a different opinion than you on his swallowing ability, but until there is a test that shows it is safe, he needs to thicken stuff.  I understand him thinking the doctors are wrong - there have been times in my life where I thought doctors were wrong  (and drumroll, please, I was right).  I  really would get the test done ASAP, though, it will show what is really happening so you can both move forward.</p>
 

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<p>Speaking a an ICU nurse, silent aspiration is a nightmare to deal with. Once someone gets pneumonia they are far more likely to get it again. Pneumonia also results in permanent scarring of the lungs. He is compromising your child's health not just for a "simple" care of pneumonia, but long term. Children are *often* intubated and become septic, just like adults, for pneumonia. This is deadly serious and I am not speaking in hyperbole.</p>
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<p>It may seem like no big deal, and a real pain to have to thicken everything you give your DS, but it is vital to his health and life. I hope your husband gets this loud and clear.</p>
 

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<br><br><div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>Wild Lupine</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues#post_16145796"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><p> </p>
<p>His argument is that DS is making so much progress, and he really is. He has no response when I point out the coughing, though. My guess, knowing DH, is that denial is a huge force in all of this and he truly believes DS doesn't aspirate any more. Denial is strong enough to overlook all sorts of conflicting information. DH once told DS's PT that DS could ride a scooter (the kind you ride on standing up, which out super-athletic 4 year old can barely do yet). DS has PT for low muscle tone and <em>cannot</em> ride a scooter, but he can push it while he walks next to it. This, in DH's mind, equates to riding a scooter, so he bragged about it to the PT. (His case manager now insists all DS's therapy sessions of any kind are with me rather than DH. I didn't ask why, I figured it was awkward enough for her to make that request and chose not to make the conversation even more uncomfortable for her, but I'm guessing they get a more accurate picture of what he's doing from me.)</p>
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<p>I can't figure out how to get another caregiver, we have no money for child care and minimal family help (3 of 4 grandparents are overseas, the 4th is looking after his own elderly parent.)<br>
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Choke cough sputter is an absolute sign of swallowing difficulties and there is no need for another swallow test yet. Even if it's only sometimes, even if it's only a couple times every meal.</p>
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<p>Silent aspiration is what you have to worry about when you never hear the choke cough sputter again. He really needs more education. I hope that you can get more health care providers involved in educating your DH.</p>
 
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Discussion Starter · #13 ·
<p>An hour after I last posted DS had a febrile seizure and was rushed to the ER. Diagnosis: pneumonia. It was terrifying, he went from sitting on the couch talking to me to completely limp and unresponsive within seconds (it was an absence seizure). He was out for about 2 minutes; honestly there were a few moment when I thought we had lost him, I'd never seen a baby have an absence seizure before so didn't immediately recognize it. He hadn't even seemed sick, just a little sniffley like the rest of the family has been for the past week.</p>
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<p>DS and I spent the afternoon and evening at the hospital (DH stayed home because DD had a playdate and we wanted her day to be as normal as possible); they brought his fever down, gave him an intramuscular antibiotic, then sent us home once he seemed better. He's sleeping now and I have emphasized - again - that he needs his liquids thickened. DH actually said that his pneumonia might be a coincidence (!) but I said coincidence or no, liquids need to be thickened! I think he got it. But my next step is to threaten to quit my job if I find out he hasn't been thickening. And I'll see I can schedule a special appointment we both can be at so DH can hear how serious this is. Though his capacity for denial amazes me, DH has a medical background and DS is on his 6th bout of pneumonia. He's a smart man, I just don't get it.</p>
 

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<p>Denial is huge, denial can make make normal sane people make very poor choices, just like your DH. This is and has been proven to be serious enough that your DH needs an eye opening conversation. I would not leave him alone with DS until an appointment with someone can be made where he can go and hear just how harmful this can be to your child AND he needs to agree never ever to do it again until the therapists deem it correct. </p>
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<p>I'm sorry about the seizure, that must of been so scary for you. <img alt="hug2.gif" src="http://files.mothering.com/images/smilies/hug2.gif"></p>
 

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<p>At this point, I would be upfront with all your medical providers about why your DS isn't getting thickened liquids consistently.  You need it to be documented that it is your husband, not you giving inappropriate care.  And I would take whatever steps necessary to fix this.  You two are at high risk of being reported for medical neglect, and having CPS involvement.  I would still be honest about what is going on, but I would be aware of the risks. </p>
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<p>As far as the childcare, I know how tough that one can be!  I'm sure you've already run through most of the options, but just in case - can you re-arrange your schedule, or work from home for some of your hours?  Can you apply for subsidized childcare?  Can you trade childcare with a single mother or other working parents?  Ask your case managed if there are any resources, often EI workers are able to help find programs or fill out applications and paperwork that may be daunting. </p>
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<p>I feel for you and for your DH.  Denial can be so strong, and is a protective mechanism when we as parents can't face what our children are going through.  It seems like fathers, especially, cling to denial for a long time.  But after awhile it has to stop - and 6 bouts of pneumonia says that time has come for you guys.  Can you arrange counseling for him, or both of you?</p>
 

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<p>OT a little, but my youngest is prone to pneumonia (she aspirated food when she was little - she has a repaired tracheal eosophagael fistula).  Long after the aspiration issue stopped, she is still prone to pneumonia.  I think the early pneumonia did a job on her lungs.  We now give her asthmatic inhalers when she has a cold and fever at the same time to prevent it from turning into pneumonia and it works.  She has not had pneumonia in one year.  This is the longest she has ever gone without having pneumonia.  </p>
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<p>Tuck the inhaler ideas in the back of your mind in case you are ever dealing with recurrent bouts of pneumonia.</p>
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<p>Hugs, mama</p>
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<p>Kathy</p>
 

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<p>Oh WildLupine, I am so sorry! I didn't know that he had come down with pneumonia before, much less six times, and so very very sorry that your DS had a seizure which I am sure scared the pants off you.</p>
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<p>I agree with PP's who have said your DH is not able to care for your DS alone. This is now proven dangerous for your DS's health. I do not tend to over react.  Nor say that one's rights as a thinking human and parent should be compromised but at this point I truly believe that your child is at risk when left alone with your DH (who obviously loves his child so much that he can't bear to think he is really this sick and needs all this special attention. The denial is strong in this one.).</p>
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<p>Don't just threaten to quit your job, make arrangements, whatever they need to be, to ensure that your sweet DS is not left alone with DH until you believe that he will never ever again give him thin liquids. I would consider medical leave/personal leave if possible and if not, just call in sick, or if worse comes to worse, quit. But do not go back to work until child care arrangements can be made that do not include your DH being the sole care provider. I know that your DH will think you are crazy, but you *are not.* I can't say this emphatically enough.</p>
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<p>If you need help sorting how to convince him, feel free to PM me or post and I know we are all here to help you sort this.</p>
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<p>I hope for a speedy recovery for your son.  When is his follow up xray?</p>
 
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<p>Also, I don't know if there are other rules that the therapist said to follow but some basics I would follow for DS are no straws, always at a 90 degree angle, straight up and down when feeding. No eating on the couch or anywhere else. Small bites, chew thoroughly and small sips of thickened liquid. I don't know if he needs chin tuck. Did they say anything about chin tuck? These rules are not to make your DH's life more difficult and not fun and restricting a natural way of being, these are strictly for prevention of pneumonia.</p>
 

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<br><br><div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>Aridel</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues-scary-update-13#post_16146983"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>At this point, I would be upfront with all your medical providers about why your DS isn't getting thickened liquids consistently.  You need it to be documented that it is your husband, not you giving inappropriate care.  And I would take whatever steps necessary to fix this.  You two are at high risk of being reported for medical neglect, and having CPS involvement.  I would still be honest about what is going on, but I would be aware of the risks. </p>
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<p>As far as the childcare, I know how tough that one can be!  I'm sure you've already run through most of the options, but just in case - can you re-arrange your schedule, or work from home for some of your hours?  Can you apply for subsidized childcare?  Can you trade childcare with a single mother or other working parents?  Ask your case managed if there are any resources, often EI workers are able to help find programs or fill out applications and paperwork that may be daunting. </p>
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<p>I feel for you and for your DH.  Denial can be so strong, and is a protective mechanism when we as parents can't face what our children are going through.  It seems like fathers, especially, cling to denial for a long time.  But after awhile it has to stop - and 6 bouts of pneumonia says that time has come for you guys.  Can you arrange counseling for him, or both of you?</p>
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<p><br><span><img alt="yeahthat.gif" src="http://files.mothering.com/images/smilies/yeahthat.gif"></span></p>
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<p><span>IDK I think I may  be seeing this as a way bigger deal than some people but DH could kill you're son! seriously I dont even understand why he is still in the house! you say in the latest post something like "if he does it again" do you understand the next time may be the last?</span> <span><img alt="Cuss.gif" src="http://files.mothering.com/images/smilies/Cuss.gif"><strong>you are his mother  and you need to PROTECT him, even if it's from his own father.</strong> I get it denial sucks and I really feel for DH but *I* wouldn't let him touch my child with a ten foot pole</span></p>
 

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<p><br>
DS seems to be OK this morning. He had a restless night, but is up and playing now, and his fever is staying down. He has a follow up with his pediatrician today.</p>
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<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>Aridel</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues-scary-update-13#post_16146983"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>At this point, I would be upfront with all your medical providers about why your DS isn't getting thickened liquids consistently.  You need it to be documented that it is your husband, not you giving inappropriate care.  And I would take whatever steps necessary to fix this.  You two are at high risk of being reported for medical neglect, and having CPS involvement.  I would still be honest about what is going on, but I would be aware of the risks. </p>
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<p>As far as the childcare, I know how tough that one can be!  I'm sure you've already run through most of the options, but just in case - can you re-arrange your schedule, or work from home for some of your hours?  Can you apply for subsidized childcare?  Can you trade childcare with a single mother or other working parents?  Ask your case managed if there are any resources, often EI workers are able to help find programs or fill out applications and paperwork that may be daunting. </p>
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<p>I feel for you and for your DH.  Denial can be so strong, and is a protective mechanism when we as parents can't face what our children are going through.  It seems like fathers, especially, cling to denial for a long time.  But after awhile it has to stop - and 6 bouts of pneumonia says that time has come for you guys.  Can you arrange counseling for him, or both of you?</p>
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<p><br>
There's a little more going on that would complicate blaming DH for this. DS developed an awful sensitivity to his thickeners last week and it was a huge struggle finding adequate ones that he would drink (he has texture issues along with aspiration issues). I was in constant email contact with his swallowing specialist and doctor's office about this while we worked together to find a solution, but there was about a day or so when neither of us could thicken to the consistency recommended. His providers all know this because of my panicked emails and phone calls for help. After a day or so I did find something that worked; it was during that time DH said he didn't think the thickeners were necessary anymore and didn't try to find something that worked, and decided not to use what I eventually found.</p>
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<p>Also, DS is adopted; the first three bouts of pneumonia were before he lived with us, the fourth and fifth were before we found out he was aspirating. This is the first bout he's had since he's been diagnosed with a swallowing disorder.</p>
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<div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>geekgolightly</strong> <a href="/community/forum/thread/1287947/when-you-disagree-on-medical-issues-scary-update-13#post_16147031"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>Also, I don't know if there are other rules that the therapist said to follow but some basics I would follow for DS are no straws, always at a 90 degree angle, straight up and down when feeding. No eating on the couch or anywhere else. Small bites, chew thoroughly and small sips of thickened liquid. I don't know if he needs chin tuck. Did they say anything about chin tuck? These rules are not to make your DH's life more difficult and not fun and restricting a natural way of being, these are strictly for prevention of pneumonia.</p>
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<br><br><p>He does have a variety of specialists, but I've never been completely happy with his feeding/swallowing specialists. I've posted about that in the SN forum. But DS does have rules for eating and drinking, not exactly what you mentioned, but similar.</p>
 
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