- advertisement -

Please help, I am desperate and need advice what to do.

Discussion in 'Parents of Children with Type 1' started by OLGA, Aug 7, 2010.

  1. OLGA

    OLGA Approved members

    Joined:
    Aug 7, 2010
    Messages:
    5
    This post is long, but please read to the end. I am desperate and I need help and advise what to do.

    My son is 9 y.o. and has type 1 since 2006 and has pupm since 2009. My ex husband constantly withholding the information about changes he makes to Nick?s insulin intake and how this affects Nick?s daily BG as well as any details about Nick?s diabetes management while he is with my ex.. I am a pediatrician from another country, I had practiced medicine and taught pediatrics, including endocrinology to med students for 8 years and I do feel I have a lot to learn and completed my son?s pump training. My ex didn?t complete his pump training and says he doesn?t need it as he knows everything. I just discovered he doesn?t even know how to administer Glucagon and makes huge mistakes with pump management.

    My son just has his first seizures this week. :eek:It happened first thing in the morning, 3-5 minutes from the time he woke up. He wasn?t given me any sings of being low, nor he complained. I have checked his BG right before it happened and he was 37, I turned around to get his juice box and it is all happened. We have seen lower BG before (even 18) and Nick still was able to walk and talk (he was showing signs of low BG but was responsive). Even with my medical training and experience seeing seizures and doing resuscitations, I am still not OK after reliving this experience. Nick ended up not going to the hospital I was able to bring him back with a Glucagon shot and then with little drips of juice in his mouth until he was able to swallow.

    When I analyzed what happened and how to prevent it I realize that my ex- is hugely responsible for what happened.

    The facts: ? On 06/16/2010 Nick had Dr?s appointment at which his Dr. has significantly changed Nick?s basal insulin numbers and asked me to collect the detailed information, including his BG should be checked not less then 8 times/day for next 2 weeks and then report to him how the new basal numbers affected Nick?s BG and if necessary these numbers to be adjusted.
    ? My ex picked up Nick 2 days later for his half of the summer (I would no be seeing Nick for next 3,5 weeks). I have asked him to collect all this information and give it to me by the end of 2nd week. He refused; he even refused to let Nick to read his BG numbers to me over the phone, saying that if anyone would report those numbers to Nick?s Dr. it would be him. I said OK, please do so. He didn't.
    ? As I discovered after the seizures he has increased Nick?s basal insulin numbers, he decreased him breakfast and dinner insulin ratio and he decreased BG target. All unauthorized to my knowledge.
    ? As Nick?s pump shows his BG?s numbers at my ex-s were up and down all the time for 5 weeks, which shows that his basal and/or bolus rations are incorrect and needed to be adjusted. My ex didn?t call to do it.

    What I have learned additionally after the seizures and follow-up Dr. visit::mad:
    1. My ex has told me after the fact that he actually had to lower Nick?s basal insulin to 80% during the day all the time.
    2. He also instructed Nick?s camp counselors to give him carb snack during the day without bolusing to prevent Nick from getting low BGs. Apparently Nick was getting carb snacks at the camp without bolusing more then once/ per day and after I seen pump reading from the time with my ex- he still was getting low BGs. According to my ex-, camp counselors called him to discuss it and increase the carb snacks. (at Nick?s pump training I was told ? if child is on the pump he must get bloused (get insulin) for every time he eats anything including snacks. Snacks without a bolus should be given only to correct low BG.
    3. My ex- increased Nick?s breakfast carb: insulin ration
    4. Nick?s BG numbers at my ex- house are like a rollercoaster, which constant low BGs a lot( few per day) and then getting rebounce all the time.

    I have not seen my son for 5 weeks, when Nick came to my house I started seeing him getting low BGs at morning and after observing this situation for few days I realized that I need to lower his basal. When I did it, I saw that my ex- increased his basal, so I decreased it to the numbers Nick?s Dr. ordered in June. But I didn?t have a chance to observe Nick on a new basal insulin numbers ordered by his Dr. in June and because my ex- didn?t share any information (1-4 paragraphs) with me I had no idea that even those numbers were too high. Because my ex- always claims that Nick needs less insulin while he is with him, I thought this should do it.

    My ex- never shared any of it with me or with Nick?s Dr. Well, 2 days after I changed basal numbers Nick had his seizures. If my ex- would share with me (or Nick?s Dr.) all his practices in Cincinnati (see paragraphs 1-4), Nick?s seizures hopefully could be prevented, because I or his Dr. would realize that his basal is too high.

    After all this even my ex- is still refusing to provide any information or collect any information for Nick?s Dr. and to get a needed training.

    You need to know the history more here, but to be short, my ex- is a narcissist (per forensic psychological evaluation made for the custody purposes), who likes to play power games with me. He is also very arrogant and doesn?t feel he needs to learn anything.

    In 2005, during our divorce, he created a spliced audio tape with so called child abuse evidences, where he falsified the events to make me look bad mother. I am worried that his games right now is the same. But even if it is not an attempt to make me look bad, him withholding any information about Nick?s diabetes management and not completeing the training is still bad.
    He always refused r to share the information about Nick?s diabetes management with me. He has done it in the past (when he was filling prescriptions, not sharing the supplies, when I took it upon myself, moving Nick?s prescription to the pharmacy in Cincinnati (I?m in Columbus) and not letting me know, not taking care of Nick?s flue and high fever while with him, and after Nick self medicated himself, not forthcoming with the truth, etc.), but now when Nick got on the pump it became the madness.

    Should I call Children?s Services? Would you consider this to be a child enlargement? Would they even listen to me?

    If you tell me to hire an attorney, I can?t do it. I lost my job 1,5 years ago and can?t find another one, I have applied even for entry retail jobs, but now luck as I my background is out of main stream and my compensation was too high before for an entry jobs. My ex- while making over 100K, doesn?t pay any child support for 3 years, and even after I lost my job, refuses to give a penny. I am on welfare now, thus I am so embarrassed to admit it.

    Because we have pending custody case in the court, when my ex- moved to Cincinnati in 2007, he filled for custody again, Child Support enforcement agency by law can?t get involved and I have to wait for a Judge?s decision on any child support arrearages. In mean while my son and I financially suffer. I spent any money I had for the custody case which was going for 3 years; we are waiting on Judge?s decision: who gets the custody. I am a primary parent now, Nick sees his dad only every other weekend and during half of the summer, but even with me being on top of his diabetes management this happened, so either way, whoever get?s the custody, I needs to do something about my ex- madness and refusal to complete the training.

    Because I owe my current attorney so much she doesn?t want to do anything unless I pay and I do not have any money to pay her or to hire a new attorney to help me now and I have no family in US, I am from Ukraine and all my family is there. They can?t help. Legal Aide can?t help either. I already tried. They have to have an open case with children?s services to help. Is JDRF or ADA could help with an attorney? Is anybody knows another source that could help with an attorney?

    I would appreciate any advice. If someone wants to speak to me directly my email is OKZS2721@gmail.com[/email]. I could also provide my phone number. Please advise what I can do to stop this madness. I feel my son?s life is a toy in my ex- hands.

    P.S. I can practice any medicine in US due to the laws, I have to go through the multiple steps before I can get my license back, and I can?t even be a nursing assistant due to the laws as well. My experience in US is in medical sales and healthcare recruitment, I have great references from clients such as UPMC and Johns Hopkins but because of the bad economy there are many other looking for medical sales as well and it is very hard to get your foot through the door. So if someone has any leads for the job I would appreciate it as well.
     
    Last edited: Aug 7, 2010
  2. Jeff

    Jeff Founder, CWD

    Joined:
    Jun 1, 1995
    Messages:
    1,549
    Managing diabetes in a child when parents are divorced is often challenging. I would suggest that you begin with your son's diabetes team, asking them to ensure that all of your son's caregivers are trained in his diabetes management.

    Also, the insulin pump companies can often assist, providing hands on training at home.
     
  3. OLGA

    OLGA Approved members

    Joined:
    Aug 7, 2010
    Messages:
    5
    We tried for last 4 years. Nick Dr. office had multiple meetings with his father to emphasize that sharing the diabetes information is the must, they also wrote a letter stating that if parent is not fully trained on the pump it could be detrimental to a child's health.

    The problem is not that he has no resources, he doesn't want them. I offered to train him, he refuses, he refuses go back to Dr.'s office and finish his training though Nick's Dr. offered him full accommodation.

    I forgot to mention as well, that all the changes my ex- made to Nick's pump such increasing his basal, lowering BG sensitivity etc, he didn't share with me he made it as well, so I could watch for it.

    This is not an issue of cooperation, this is the issue of a power games. Nick's Dr. office did all they could. They told me they can't make him to do anything, he doesn't listen. I need a lawyer. :(
     
  4. Becky Stevens mom

    Becky Stevens mom Approved members

    Joined:
    Oct 14, 2008
    Messages:
    8,719
    OLGA you definitely do need a lawyer. If your sons Father is not caring for him properly that would be considered neglect . You need to make sure that you document everything of when your son is with his Father and what his blood sugars are while hes there and any information that you get off his pump. Your son is old enough to be able to assist with his care and telling you what happens as far as his blood sugars and how much insulin hes given when hes at his Fathers. I dont know alot about pumps but I thought that info was available off the pump, as far as when and how much was given for boluses.
     
  5. blessed

    blessed Approved members

    Joined:
    Mar 2, 2008
    Messages:
    182
    Breaks my heart when children suffer because of a divorce

    First and far most. I am NOT blaming you. My heart aches when I hear of situations like this. I too divorced when my son was only 5 years old. Fortunately, his father and I didn't fight. He didn't do the greatest job with my son's diabetes management, but I quickly taught my son how to take care of his diabetes =( sad that I had to force the responsiblilty on my son at a young age, but it was my only option. I couldn't afford an attorney either. I knew that his dad wouldn't take care of our son the way I felt he should...It is all so tough. I wish I had good advise for you....The only thing I can say, is as mean and as unkind as your ex may be.... do all YOU can to be kind. Maybe he will someday see that it really is easier to be kind than to fight about a child especially a child. I am just so sorry your child and you are going through this.
     
  6. Melancholywings

    Melancholywings Approved members

    Joined:
    Sep 15, 2009
    Messages:
    331
    I can't give any legal advice but I know of other T1D kids who are in situations where one parent is not complient and uneducated. What is working for them is they have empowered the child to understand everything they need so they have very little reliance on the other parent. It sucks that a kid can't trust the other parent. I also second keeping records and talking to the endo team.
     
  7. blbrocky

    blbrocky Approved members

    Joined:
    Apr 25, 2007
    Messages:
    410
    Are you able to download the pump info before your son goes to his dads and then download again when he returns?

    If this is an option you would be able to see the changes made to the pump when your son is at his dads.
     
  8. hawkeyegirl

    hawkeyegirl Approved members

    Joined:
    Nov 15, 2007
    Messages:
    13,157
    Yes. One of the benefits to the pump is that you should be able to see any changes that your ex-makes at his house once your son returns to you. You could even create a separate basal pattern for your house - if your ex is as incompetent as you say with the pump, he won't even find it on there.

    If your ex is being willfully ignorant, more training isn't going to help him. I'm not sure if you're familiar with the saying that you can lead a horse to water, but you can't make him drink, but that's what you're dealing with here.

    If you are on welfare, the state child support enforcement office where you live should be VERY interested in helping you collect your back child support. I'm not sure I understand why they're not involved.
     
  9. bgallini

    bgallini Approved members

    Joined:
    Feb 23, 2008
    Messages:
    3,950
    I am not in your situation so I may be way off base here. But I would try to limit the power struggle here. I would accept that he is going to handle D care differently and I'd do my best while my son was in my care. Check the settings when your son comes home and adjust them accordingly. It's my understanding that often kids need different basals when they are at mom's house vs dad's house due to dif activity levels and other factors. It's been 4 years since your son was dx and your ex clearly doesn't want your advice or input or even the Dr's advice.:( I don't see what you can do to change that. Dad will figure out what works and what doesn't work with the pump and hopefully come up with a semireasonable way to handle it.

    Definitely continue to keep records of things in case it can be useful in the future. And keep trying to find a lawyer to help with the custody issues in general. But try to keep the D care out of it as that can only add to any concerns your son might have that he may have caused the divorce (a common concern of young children.)

    When your son is older, he will be able to more of his own D care. But don't be surprised if your ex doesn't agree when that time is!:cwds:
     
  10. zell828

    zell828 Approved members

    Joined:
    Feb 20, 2008
    Messages:
    1,918
    With two households we have a daily log book that we pass back/forth and we write EVERYTHING down so the other house can see it. Basal/insulin changes, how food affects, what exercise, etc. I LOVE having this book, it is the best thing we ever did. It is the best communication device for us. We can see patterns very well too. I know you probably would have a hard time getting your ex to do this if he isn't telling you things, but it is just an idea....

    I would just double check your son's pump when you have him as to what things are set at so you know if you aren't being told. That would give you the answer. Download the pump often to see the changes and what needs to be done, even give copies to your ex so he can see things too.

    Start teaching your son what he needs to do as well and what is important.

    There is usually legal help out there for those who can't afford it. We have it in our state/county. Look into it if necessary. Keep talking to the doctors too. I know it is a helpless feeling to see the other side not doing as well, but then it is up to the other person to stay aggressive and on top of things too.

    Try not to play the blame game on each other either. Diabetes is very unpredictable and things happen to the best caregiver.

    Good luck :)
     
  11. CassiesMama

    CassiesMama Approved members

    Joined:
    Jan 17, 2010
    Messages:
    363
    If you are getting welfare of any kind from the state you are in they will proceed with child support filings. They are required to do so because you are receiving federal funds. That right there over rides any divorce decree or what not. As far as how your sons management is being handled when he is with his father try to file your own papers for emergency adjustments to the custody arrangement. He is endangering his health with what he is doing. See if they can order no visitation or supervised visitation until his father learns what he needs to know in order to safely take care of your son.
     
  12. OLGA

    OLGA Approved members

    Joined:
    Aug 7, 2010
    Messages:
    5
    Thank you so much for all your advice. As a physician I know how unpredictable D is, so I agree even with a perfect care things can happened. I have seen it in my past practice all the time. My ex- though constantly blames me; it was one of his claims in the custody case: that I am so bad that Nick needs more insulin while in my care. :rolleyes:

    Well, today he blamed me that I almost killed our son with seizures???? :eek:

    Regarding the power straggle, I agree and I try to avoid any and I try to be kind. Though I am sure it is hard to believe for those, who are not familiar with what is narcissistic personality, but who had to deal with narcissistic personality would know that no matter how hard you try to avoid it, the narcissist would maker it anyway, this is how they get their fix.

    Regarding the getting the information from the pump I understand that you can download the information from the pump, but I have to go to the Dr.?s office to do it. Is there any way I could do it at home. Another problem is what if changes made only temporarily and then changed back, would this information stay in the pump. I believe it wouldn?t be saved. My son manages his D as much as he can, but he also has ADHD, so he forgets a lot, and he needs to be reminded to bolus and check his BG all the time, in fact even he is reminded he needs to be double and triple reminded as he forgets that he just was reminded :( , so it is hard to put this completely on him. I wish some day he would be able completely on his own, but not today. Setting separate basal is a great idea, I will ask the Medtronic to help me with it.

    With log, Nick?s Dr and I tried to have one but my ex- doesn?t want to do it. He destroyed it twice, so I stoped sending it there. I jsut send him emails with the information about Nick's stauts, nuimbers, changes and any observation I have.

    Regarding the child support, if you have an open case in the court in front of the Judge, Child Enforcement Agency can?t get involved; I already filed and was denied. I have to wait on Judge?s decision now, and then they will enforce it. Hopefully soon. Thank you for emergency filing advice. I will investigate it and try to do it ASAP.
     
  13. blbrocky

    blbrocky Approved members

    Joined:
    Apr 25, 2007
    Messages:
    410
    What pump is your son using? With the MM you can download from home using Carelink. You can print the setting if you want. When your son returns from his dads download the pump again and it will show the new settings. You can then change back as needed.
     
  14. OLGA

    OLGA Approved members

    Joined:
    Aug 7, 2010
    Messages:
    5
    He is using Paradigm. I have to confess, I am not computer savy and that are not frendly to me. My son changes something on my phone and i can't sometimes change it back. This is how bad it gets. :eek: :eek:

    You seem to be a young man who probably is very good with teachnology. Could you be so kind to be more spesific were to go and what to get to have this program? I am pretty much feel like a stone age person with all new staff coming out so fast. :eek:
     
  15. OLGA

    OLGA Approved members

    Joined:
    Aug 7, 2010
    Messages:
    5
    I am sorry Becky. I saw a picture and I thought it was the person who wrote an email. i didn't realize that you put the picture of your son, but in fact a posting person is a woman. :eek:
     
  16. bgallini

    bgallini Approved members

    Joined:
    Feb 23, 2008
    Messages:
    3,950
    Maybe you can ask the people at Medtronic to teach you how to download the pump info onto your computer. It's not all that hard but you do need a CareLink link from them to do it.

    I don't know how much info will be on it when you download it....like if he makes temporary changes and puts them back. But to be honest, that's not the important part. What's important is that you check to see if the settings are correct for your house when he comes to your house.

    I hope you can get everything settled soon.
     
  17. simom

    simom Approved members

    Joined:
    Jun 2, 2008
    Messages:
    226
    Olga - given your financial situation, you may be eligible for reduced-cost legal assistance. In many states there are groups called "Legal Aid Society" or similar that provide low cost/no cost legal assistance. There may also be legal groups that focus on issues for women (including child support and family law). Some states also have networks formed by lawyers willing to do volunteer legal service for low income clients. The best way to find these resources in your area is to contact the state or county bar association - they can give you the contact information for these resources.

    Also - some states will appoint someone called a "Guardian Ad Litem" for a child - usually these guardians represent children in foster care, or other protective custody, but in some cases where the child has a specific need (i.e. diabetes) a Guardian Ad Litem may be able to independently represent your son in the court proceedings. It is important to note that such a guardian would not represent you, or your husband, only your son.
     
  18. Omo2three

    Omo2three Approved members

    Joined:
    Jul 11, 2008
    Messages:
    1,663
    I would call your pump company and request help with downloading info onto your pc.

    The pump rep should be able to help you. Also the lows that your child is experiencing, I would ask for a pump rep to make a house call and help you with your pump management.

    Then as far as your ex...if your unable to work together for the health of your son, I would teach your son too...he is 9. And the basics can help.

    You said your son needs more insulin in your care...and that is where he is having lows and seizures.
    more insulin increases hypoglycemic or low BG. YOu need to decrease your child's insulin. And do night checks. Reduce morning basals if your seeing 37 or 18...you need to reduce the basals significantly. Review pump manual and get your endo team to help you...ASAP
    We give uncovered carbs all the time...NEVER give insulin for LOW bg.


    I would be on the phone today calling for diabetic educator. YOU need to learn the basics for the child's health.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice