The elusive growth hormone

I know I have said this before and I know I will continue to stress about this but for the last three years or so I have complained that I felt Gabe wasn’t growing like he should be. He eats well but barely gains weight and grows height wise at a very slow rate. We are now onto our fourth endocrinologist who we have been seeing now for almost a year.  We saw him today after 3 months and he asked if I thought Gabe had grown any and I said no. So after measuring him and weighing him he agreed that Gabe has not grown since our last appointment and has now totally dropped off of the charts in both height and weight. But yet he still does not want to start growth hormone. He wants us to wait until our appointment on 2/25 to do the 3 hour growth hormone stimulating test. Then he wants to wait for 2 more weeks for me to call him and to discuss those results. Then we will go from there. But even if he does decide at that point who knows how long it will take him to apply to our insurance company and for our insurance company to approve it. I am beyond frustrated at this point and do not know where to go from here. The thing that irritates me is I know so many people who have their child on growth hormone for other reasons but did not have to fight like this. I also know many people with children with a kidney disease who have or had their child on growth hormone and also didn’t need to jump through hoops like this. What’s even more frustrating is that Gabe is 7 and still wears some size 4 clothes and weighs 37 lbs!!! And is only 42 inches.  This is I think more than negative 2 on the growth chart!!!!! He is 52% below the “average” 7 year old!!!!!!  That is just insane to me.

Besides that the endocrinologist seems to now be more concerned about Max and his growth issues so I need to do some follow up with him. And we have already been down to the city for 5 appointments since the beginning of the year and need to go in a few weeks for a sonogram for both boys and for Gabe’s 3 hour growth hormone stim test. Besides that the nephrologist wants me to take Max to a pulmonologist and Gabe needs to see an ENT. And I need to follow up with the hematologist for Gabe and the GI for Max! And I’m having half my thyroid removed in March!!! And we have already spent $1000 on medication this year and over $300 on copays!!!! That isn’t even including our deductibles!!! Wow and its only the fifth of February! 

February 6, 2013 at 8:05 pm Leave a comment

What it’s about

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I love the happiness in this picture and wish this was what it was only about.

January 19, 2013 at 11:57 am Leave a comment

Crazy?

Sometimes when I talk to certain people I feel they think I am crazy or overreact or neurotic. I might be all of those! But I hate the feeling I get after these conversations about my boys and their health. The thing that bothers me is that they do “look” so good on the outside I really do feel most people forget how “sick” they are on the insides. Even health professionals.

The school nurse called today from Max’s school because he is going on a class trip on Friday and he has a standing order in his file for tylenol. They need me to drop off a bottle of tylenol for the trip because they don’t have any. Now what they would have done if he came in with a headache is a whole other story!!!! So while we were on the phone I asked if the teacher had his medical file with her on the class trip and was told no that she only has a medical alert on a child and not necessarily even a diagnosis. Am I crazy to think the teacher should have all of the medical information on a child when she is going to take him on a field trip that requires a 40 minute bus trip. I said I wanted the teacher to have his diagnosis written down along with a list of his medications. Seriously. I hope nothing ever happens but G-d forbid what if the bus were in an accident. Or even if Max fell and hurt himself. But her tone of voice made me feel like I was being way too overprotective.

But….. let’s back track. I admit I am hypersensitive (as Matt likes to call me)! I have a hard time reading into what people are saying. Last Friday I went to an outlet mall with a friend that was a good 40 minute drive. At 1:15 my phone rang and it was the nurse at Max’s school that he had a stomach ache. I said I was 40 minutes away. She said she had a left me a message earlier in the day but I never received it. When I got home I saw she had called at 10 in the morning but had not left a message on my home number and had not called my cell. At 1:15 I asked if Max could walk home and she said no he would just have to go back to class. This was a new nurse so I asked if she knew his medical history and she said yes they had his file. But she made it seem like she didn’t really know the extent of his disease and only had the information in the file. I really didn’t like her attitude and said I felt she was being flippant with me. When I finally got there to pick up Max he said when he went in at 10 they didn’t even acknowledge him at first and then when they couldn’t get me on the phone told him to go back to class that there was no difference between sitting in the nurses office and sitting in class. They did not offer him water or crackers or anything and did not take his blood pressure. I was really upset about this and talked to the vice principal that afternoon. I now have a meeting set up with the nurses this Thursday.

So back to today’s conversation…. I don’t really think these nurses are too happy with me complaining about them to the v.p. But then again maybe I am just too hypersensitive.

But am I crazy for wanting Max to have all of his medical info with him on a school trip? Am I overreacting? Am I neurotic? Well…yes, but what about for this situation?

October 16, 2012 at 12:47 pm Leave a comment

Walk for PKD

Today we participated in our 7th walk for PKD for the PKD Foundation!!! Our team the Three Peas in a Pod had 47 walkers and at this point have raised over $14,800. In a week with a lot of controversy with various organizations and the loss of a special boy, Zane, to ARPKD I am trying to stay hopeful that there will one day be treatments and maybe even a cure for this disease.

Why I walk:
I walk for my boys… The Three Peas in a Pod. I walk to advocate for them and to raise funds and awareness for ARPKD. I walk to honor all of the children living with ARPKD. I also walk to remember all of the babies and children who have passed away from this disease that currently has no treatments and no cure. And I especially walk for hope. Hope that more doctors will be educated on ARPKD, hope that more babies will survive and live with ARPKD, hope that treatments will be found, hope that even a cure will be found some day, and especially hope for my boys and their future.
Michele – mom to the “three peas” Max, Nate, and Gabe

September 22, 2012 at 1:49 pm Leave a comment

Funny yet infuriating

Matt’s insurance changed this year and we now have to get all of our maintenance medications through the mail order system. This does save us some money but last year it caused so much aggravation that we decided to stick with our local pharmacy. So once we found this out we had to switch everything back to mail order. Even our new nephrologist has complained that when he calls in the scripts they question him on the dosages.

I happen to have a doctor, my neurologist, who has the same last name as the boys’ nephrologist. Ironic. Her husband is a distant cousin. BUT her first name is Leslie and the boys’ doctor’s first name is Jeffrey and they are out of different hospitals. So a few months ago we realized that some of the boys prescriptions were listed under my neurologist’s name. We’ve been trying to remedy this for a while now. Matt’s company gave us a contact person at the mail order facility thinking this would be helpful. I emailed her this week about that problem and her response was that Dr Leslie S…. Called in the prescription for Gabe so they cannot change it to Dr Jeffrey S……’s name. Now how funny yet infuriating is that!!!

I emailed her back today and told her that was impossbile since Gabe has never been her patient. She probably doesn’t even know what some of his medications are let alone what dosages he would need. She doesn’t even know his name or date of birth!! She is an adult neurologist!!

I get frustrated with the little things sometimes because I have such big things to worry about and these little things take up way too much of my time. But when I think about the stupidity of this one I do have to laugh……..so I won’t cry 🙂

 

August 7, 2012 at 11:25 am Leave a comment

Third time

is a charm. Isn’t that what they usually say. Well next week Gabe will see his fourth endocrinologist. So since our third time wasn’t a charm I am hopeful that the fourth one will be!!! The first one told me to feed him cheetos and McDonalds to fatten him up and then he would grow. The second one said yes he does need growth hormone but she wouldn’t prescribe them but our nephrologist would. Of course our insurance wouldn’t pay for them that way. The third one seemed like she was thinking about it but kept saying she wanted to figure out why he wasn’t gaining weight and ultimately keeps telling us to come back in a few months. Each visit costing us $40 in a copay and then to be told see you in a few months even though Gabe is hovering at the very bottom of the growth charts.

So on the 30th we will go to yet our fourth endocrinologist in the hopes that he will be on board without having to do major testing and wait a ton of time. Gabe is now over 6 and still wears some size 4 clothes. He is the shortest one in his class by far. Strangers often think he is much younger than he is. Plus he eats really well but just isn’t growing.

 

Wish us luck!!

May 19, 2012 at 9:11 am Leave a comment

One down

Cardiology went well yesterday!! Two clear EKGs, two good echocardiograms, and two good blood pressure readings. $80 dollars for copays but worth the relief of knowing no enlarged left ventricles.

Today we have urology! Last week was orthopedist that went well. Next week dermatology. Then July for endocrinology. Do we have June free of specialists??? That would be amazing!

May 8, 2012 at 9:26 am 1 comment

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