dabel Posted February 2, 2011 Report Posted February 2, 2011 My 13 yo is in crisis! I do not know quite what to do. He now refuses to take his antibiotic or probiotic. He is staying up half the night. He was literally up all night last night and did not go to sleep today. He is staying at my mother's house 5 1/2 hours north of us because he is unable to be with his family. He does not want to leave the house. He does not want to see any other people besides his grandmother. He is massively depressed. He thinks his life sucks. He has not been able to attend school for three years. He no longer enjoys the things that he used to. He will not speak to me. He finds no joy in life. He does not want to be here. No need to go on.... I can not get him to come home to go to the LLMD. I found a nurse practitioner up north that treats Lyme and is ILADS trained. I spoke with her on the phone last week to see if she could help my baby. She was very kind and was willing to help but did say that he was a very complicated case (I am so sick of hearing that even though I know it is true ... just fix him please!) and I told her I would get back to her. I called her in tears today as my son is in such a bad place. I told her that I was going to make an appointment but did not know if I would be able to get my son to her office. She offered to go to my mom's house an hour and a half a way to see him!! What an angel!!!! She has also been in touch with two big Lyme doc's to see what they suggest in such a crisis situation. She suggested having a PICC line put in. She thinks we should consider a central line over a PICC line though because he is so non compliant right now (because he does not care anymore) and she is concerned that he will rip it out. I think she may be right. I think he may end up inpatient (I pray not....been there done that) and she said that they would have to follow the orders if they are in place at admission. I want to avoid the psych ward but I have to do something soon. My question is have any of your children or yourself had a line put in and if so did you see improvement quickly? Please pray for my boy! I pray having her go to my mother's house does not put him over the edge but I HAVE to do something NOW. I am just going to have to be prepared to have some tough love if need be to get him the treatment he so desperately needs. I can't just let him fade away without a fight.
kmom Posted February 2, 2011 Report Posted February 2, 2011 I don't have experience w/ the PICC line or central line but I do believe in the power of prayer and tough love. So I'll do the praying and you do the tough love or whatever it takes to get him well no matter how much he hates you till he gets well and can thank you later on. Good luck and know he's added to my nightly prayers.
KeithandElizabeth Posted February 2, 2011 Report Posted February 2, 2011 Dabel: I know that there are families on the lymenet website (under flash discussion/Medical Questions) who have had children on IV antibiotics. I think you will get a great deal of responses over there. I do not have experience with IV antibiotics, but given your son's non-compliance with taking the oral antibiotics and the severity of his symptoms, the IV antibiotics sound like a good idea. I know you have to protect the gallbladder and I have heard there are drugs to help do this. My thoughts are with you right now and we will keep thinking of ideas for you! Elizabeth
Suzan Posted February 2, 2011 Report Posted February 2, 2011 My heart goes out to you and your family. I wish I could help somehow. You are in my thoughts and prayers and I hope this wonderful nurse can help. I don't have any experience with IV abx though. Big Cyber hugs to you. Please keep us posted. Susan
tpotter Posted February 2, 2011 Report Posted February 2, 2011 You are so in my prayers. My son has been almost where your son is, but he wasn't refusing meds. But, I so feel for you. Believe that this nurse was sent to you, because she offered to take that extra step.
MichaelTampa Posted February 2, 2011 Report Posted February 2, 2011 Oh my goodness, so sad! I started my lyme treatment on IV abx. It was Invanz, but also took orals alinia and tindamax during the same time. It was alinia for 2 weeks, then tindamax for 2 weeks, then repeat, all the while on the Invanz. I had the IV for 2 months before the insurance stopped paying for it. After the two months, while I was still months and months of treatment away from being fully cured (who knows, I'm not there yet), I was feeling much much better by the end of the two months. I was very tired in the beginning, for the first couple weeks, but after that, could see slow and steady progress. I'm not too familiar with the PICC and central line things, but understand the idea of avoiding a situation of it being pulled out. My lyme doc does the IV's a little different than many, I had a new IV catheter put in my arm every week, his theory to avoid chance of infection. You got to do what you got to do! The probiotics are so important during abx! Good luck!
sf_mom Posted February 2, 2011 Report Posted February 2, 2011 I can not even imagine your situation but this nurse is truly a blessing. I too believe a PICC Line is the way to go for your son to get him functioning and taking medication. Once he is past the worst and feeling better, I believe he will be much more compliant with future oral antibiotics. Hopefully, he is more willing to listen to this nurse, who is in a position of authority outside of the family that wants to help him get better. Tons of prayers. Sorry, I have no experience with PICC Lines either other than knowing it can provide rapid relief. -Wendy
Iowadawn Posted February 3, 2011 Report Posted February 3, 2011 DeAnn- I wish I had answers for you. My heart aches for you and Aaron. I was awake at 3 this morning thinking of your situation. The best I have to offer is my cyber-shoulder and prayers. A Divine appointment--that's what the NP is! I'm always available and would even answer the phone in the middle of the night if you need to call. Anxiously waiting to hear how this works out. Dawn
philamom Posted February 3, 2011 Report Posted February 3, 2011 Adding my prayers. It truly sounds like this nurse is a blessing. I can't offer any suggestions- just wanted to let you know your son is in my thoughts.
Fixit Posted February 3, 2011 Report Posted February 3, 2011 Prayed for your ds when i first read your post..and i will continue.
dabel Posted February 3, 2011 Author Report Posted February 3, 2011 Thanks to all of you for your kind words and thank you to those who pm'd me info etc. I truly appreciate it! The nurse practitioner is scheduled to come on Monday. I think God sent her! I have sent all of his info etc so hopefully we can get the ball rolling quickly. Now I am wondering how the heck I am going to get him to a hospital to place a line when he won't even swallow a pill any more. Oh well, I will have to jump that hurdle when it comes. Your prayers are appreciated and much needed as I try to save this boy from the torment of his own bug riddled mind. It blows my mind to think that a little bug can do this to our children!! So sad for all....
justinekno Posted February 3, 2011 Report Posted February 3, 2011 (edited) It is scary but you are doing all the right things. Your son will definitely thank you some day. Just keep doing what you're doing. I'll be praying for you and your family. Thanks to all of you for your kind words and thank you to those who pm'd me info etc. I truly appreciate it! The nurse practitioner is scheduled to come on Monday. I think God sent her! I have sent all of his info etc so hopefully we can get the ball rolling quickly. Now I am wondering how the heck I am going to get him to a hospital to place a line when he won't even swallow a pill any more. Oh well, I will have to jump that hurdle when it comes. Your prayers are appreciated and much needed as I try to save this boy from the torment of his own bug riddled mind. It blows my mind to think that a little bug can do this to our children!! So sad for all.... Edited February 3, 2011 by justinekno
Bucci Posted February 4, 2011 Report Posted February 4, 2011 My 13 yo is in crisis! I do not know quite what to do. He now refuses to take his antibiotic or probiotic. He is staying up half the night. He was literally up all night last night and did not go to sleep today. He is staying at my mother's house 5 1/2 hours north of us because he is unable to be with his family. He does not want to leave the house. He does not want to see any other people besides his grandmother. He is massively depressed. He thinks his life sucks. He has not been able to attend school for three years. He no longer enjoys the things that he used to. He will not speak to me. He finds no joy in life. He does not want to be here. No need to go on.... I can not get him to come home to go to the LLMD. I found a nurse practitioner up north that treats Lyme and is ILADS trained. I spoke with her on the phone last week to see if she could help my baby. She was very kind and was willing to help but did say that he was a very complicated case (I am so sick of hearing that even though I know it is true ... just fix him please!) and I told her I would get back to her. I called her in tears today as my son is in such a bad place. I told her that I was going to make an appointment but did not know if I would be able to get my son to her office. She offered to go to my mom's house an hour and a half a way to see him!! What an angel!!!! She has also been in touch with two big Lyme doc's to see what they suggest in such a crisis situation. She suggested having a PICC line put in. She thinks we should consider a central line over a PICC line though because he is so non compliant right now (because he does not care anymore) and she is concerned that he will rip it out. I think she may be right. I think he may end up inpatient (I pray not....been there done that) and she said that they would have to follow the orders if they are in place at admission. I want to avoid the psych ward but I have to do something soon. My question is have any of your children or yourself had a line put in and if so did you see improvement quickly? Please pray for my boy! I pray having her go to my mother's house does not put him over the edge but I HAVE to do something NOW. I am just going to have to be prepared to have some tough love if need be to get him the treatment he so desperately needs. I can't just let him fade away without a fight.
Bucci Posted February 4, 2011 Report Posted February 4, 2011 My 13 yo is in crisis! I do not know quite what to do. He now refuses to take his antibiotic or probiotic. He is staying up half the night. He was literally up all night last night and did not go to sleep today. He is staying at my mother's house 5 1/2 hours north of us because he is unable to be with his family. He does not want to leave the house. He does not want to see any other people besides his grandmother. He is massively depressed. He thinks his life sucks. He has not been able to attend school for three years. He no longer enjoys the things that he used to. He will not speak to me. He finds no joy in life. He does not want to be here. No need to go on.... I can not get him to come home to go to the LLMD. I found a nurse practitioner up north that treats Lyme and is ILADS trained. I spoke with her on the phone last week to see if she could help my baby. She was very kind and was willing to help but did say that he was a very complicated case (I am so sick of hearing that even though I know it is true ... just fix him please!) and I told her I would get back to her. I called her in tears today as my son is in such a bad place. I told her that I was going to make an appointment but did not know if I would be able to get my son to her office. She offered to go to my mom's house an hour and a half a way to see him!! What an angel!!!! She has also been in touch with two big Lyme doc's to see what they suggest in such a crisis situation. She suggested having a PICC line put in. She thinks we should consider a central line over a PICC line though because he is so non compliant right now (because he does not care anymore) and she is concerned that he will rip it out. I think she may be right. I think he may end up inpatient (I pray not....been there done that) and she said that they would have to follow the orders if they are in place at admission. I want to avoid the psych ward but I have to do something soon. My question is have any of your children or yourself had a line put in and if so did you see improvement quickly? Please pray for my boy! I pray having her go to my mother's house does not put him over the edge but I HAVE to do something NOW. I am just going to have to be prepared to have some tough love if need be to get him the treatment he so desperately needs. I can't just let him fade away without a fight.
pixiesmommy Posted February 4, 2011 Report Posted February 4, 2011 I know you have been fighting hard for him. I am thinking of you and hope this is just the breakthrough you have been hoping for. ((((hugs)))) I'm here too if you need to call and just vent/cry, etc.
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