Dear JustMe,<p>Thank God that your son doesn't have a brain tumor. I prayed for you and your son when you first posted. I can't imagine the fear that you have lived through over the past couple of months.<p>To all those involved in this argument (which seems to come down to BSs against OWs), I don't want to add to the war here, but did think I might be able to interject a little calm. <p>1. There are many, many conditions in which the use of HGH is not being used to save a child's life, but rather to make a child taller who has another condition that will render him shorter or much shorter than average. We don't know what condition JustMe's son has. We don't know if this treatment is to save his life or to make him taller. <p>2. In conditions where it is used to make a child taller (Swyer's, Itrausterine Growth Restriction, and many others) it use is less effective and open to lots of controversy (http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query_old?uid=11817985&form=6&db=m&Dopt=b)<p>3. In those conditions where short stature is a side effect (see those mentioned above) and not caused by the endocrine system being unable to produce enough HGH, its use allows a child to gain 1 to 3 extra inches of height by adult age. If a girl had Swyer's syndrome, and her projected height is something like 4'9", $100,000 worth of growth hormone, she might reach 5' tall. There is a great deal of debate out there if the small gain in height is worth the expense and the other medical risks. Some (short) parents have children with no medical conditions (other than having short parents (One of my firends is a physician and the lead reseracher on HGH for a major pharmaceutical firm.)<p>3. Insurance companies and (I believe) state welfare/medicare programs do not pay for growth hormone supplementation (when it is used only for increased height) for some of the reasons above. The vast majority of children in this situation do not get the treatment because of the reasons above. Many people, married, single, widowed or whatever, have to make that difficult decision--is the expense worth the small amount of extra height.<p>I am sorry for anyone in this situation. I know that we all want perfect lives for our kids no matter how they were conceived or raised. We all want our kids to be the prettiest, the smartest, the fastest and the best.<p>Justme, we know so little of your situation and we are all making so many judgements based on our own value systems and our life situations. That includes me. If I had a child who might die w/o this treatment, I would move heaven and earth to get my child this treatment. However, that doesn't sound like your situation since he won't have to take it beyond age 18 and if it were life threatening, I *believe* that insurance would have to cover it--up to the limits of the policy. If I had a child that was going to be short due to some other condition, I don't know what I would do. I know that many children do not get this treatment because of lack of such huge amounts of money. I might regretfully conclude that my child is another child in such a situation.<p>I think that you have posted your question and your follow-up in a very respectful and caring way. You don't deserve to be slammed by any of us.<p>I think we are also being crashed by some OWs and we are just having the same over-the-top old, old, old argument again.<p>Peace,
MJ<p>[ February 09, 2002: Message edited by: MaryJanes ]</p>

Tinlizzy<p>"It sounds like you wanted to get in contact with mm anyways before you even knew the results of the test."<p>That to me is a statement, not a question to get her to see her situation in a different light. It's a very judgemental statement at that. Where did you get the idea that she was missing him and wanted him back? Do you automatically assume every OW wants their MM back? LOL.

Let's not nit-pick on this post, please! Justme came here for advice on what she should do. If she found it offensive, let her say so! This thread is on what she should do about her sons medical condition, and the cost of the treatment. She has asked valid questions, to which she has received many different points of view! We are not here to argue with eachother, but to try to help any one coming here with honest questions and seeking anyone's advice. <p>So, Tin, before you respond back, please just let this part of the thread die, and let the advice on what to do for this little boy continue. I do not and am not judging anyone here, I just don't want Justme's thread to turn into a bash fest or the rest of this board for that matter! Just let it go!!<p>JMHO, again!<p>Tigger

I am not at all offended by any of the responses. I came here for advice and I am open to all perspectives. I will tell you with a straight face that I am not trying to find my way into MMs life. I accepted the agreement for lump sum of child support to get him out of my life but now I am faced with a situation that, unfortunately, may involve contact with him. I can pretend for a minute that MM is not alive......there are lots of "what ifs" but this is reality and I have to make a decision based on the way that things are today...not what they could be. I could die tomorrow and maybe MM would then raise OC and it would be 100% his responsibility. I can't stress myself anymore thinking about this....it is driving me crazy. <p>I am so torn. I want more than anything to never have to ask MM for anything and allow him to take care of HIS family. But at the same time, OC is equally entitled to the same health benefits as MM children. I am not saying that OC is wanted but he is entitled. I know MM wishes that OC didn't exist. <p>I do appreciate all of the advice and I think I'm going to write a letter explaining the circumstances and that it would be great if we could work something out without spending $$$ on attys fees. I like the idea of adding OC on MMs insurance policy - maybe then it wouldn't cost either of us an arm and a leg. Thank you all for your opinions and suggestions. <p>In all of this I do have some good news!! I have agreed to have OC participate in a "study". It's not placebo or anything like that but it is a "study" before the drug is atually approved by the FDA. What this means is that for one year, all costs will be paid by the pharmaceutical company (MRI, daily shots, dr. visits, blood work, etc.)<p>Thank you for your opinions, thoughts, and prayers.

JustMe,<p>How wonderful that your son has been accepted into a study. Members of my family have also participated in a study and it can be a real blessing when the cost of the medication is out of reach. (We have a major birth defect that runs through my family that causes infertitilty, high cancer risks and osteoporosis and a reduced ability to sweat. OK, I have it and so do many of my female relatives. I know what it is like to be faced with major medical issues and I am so glad that you have at least a short-term solution.<p>God bless you and your son,
MJ

justme, if you are sincerely concerned with your child's welfare, I would approach the wife, not former MM.<p>Ember

Justme,
I'm sorry your son and yourself are dealing with this pain, and glad that you have at least a temporary way to pay for his important medical care. My prayers for his good health.<p>Everyone has a slightly different situation and others may not remember your earlier posts here, to the effect that MM's wife was extremely angry and one of the reasons for your one-lump-sum settlement vs. ch-support. <p>Given that they have made it VERY clear they do not want further contact from you, I would proceed very carefully and avoid contacting them. I'm assuming the wife (and possibly the MM too) has hoped and prayed to never hear from you again. That seems cruel to some, but I can understand the desire to move on and leave behind an ugly chapter in life, the betrayal of marriage vows, the inability to raise your son as their own, the many disruptions to living as a normal family. Some people just cannot deal with further contact.<p> IF... IF it becomes necessary and is legal to contact them, run it by a lawyer and make the letter as kind as possible, making clear your sorrow, your intentions, what your son's medical care needs are exactly, what he needs and why he cannot get help any other way. Be very sure before you open that can of worms again.<p>That's my .02 for now...
Why is your son's care not covered by medical insurance already? Why would MM's cover it but not yours? Sorry if I missed that point.<p>J
in recovery 3+years and happy [img]images/icons/smile.gif" border="0[/img]

I had a thought, was wondering if you could switch to a HMO through your company during open enrollment? My daughter is getting hormone shots every month and she will need them for a number of years like your son and we don't pay a dime.<p>They thought she had a brain tumor also but she doesn't. Her condition is different from your son's, but has to do with her body producing too much estrogen...<p>If you really don't want to contact MM, maybe switching insurance plans is the way to go esp. if not receiving the hormone therapy will mean that your son will turn out to be under 5 feet.<p>You don't have to do everything the doctors say and you are entitled to another opinion.

The reason why I said what I said is because the doctors also told us that our 7-year old son would be "dead in 2 days" when he was an infant... Doctors can be wrong...<p>Is your son showing awful, unbearable symptoms? Seizures, headaches? Vomitting? Is he in pain all the time?<p>How come this study is so expensive? Are they testing some new drugs on your boy? Have you seen any other kids who have been on the shots for long-term?<p>Will he die if he doesn't have the shots? Ask them would they give these shots to their own child and see if they pause before they answer you?<p>Sometimes doctors get excited about trying new things on our kids! It's okay to tell them NO! They don't have the final say. God has the final say. Keep the faith!

There is a fund in my state called, I am not exactly sure of the name, Aid for families with children with catistrophic illnesses or something similar to that. Anyway the aid has nothing to do with your insurance and they help with medical bills, due to the illness of the child and the expenses being overwhelling. Maybe, there is something similar in your state, best wishes and prayers for healthy outcome. Peace, Gabi1116