Any experienced moms out there still post. My 3 year oldis going in for a GH Stim test in a few weeks and I would love to be able to talk about it with some who have been through it.
METUBAL
Posts: 713
5/2/10 6:22 P
Does anyone still post here? I have a few questions for those who have gone through GH therapy.
Miscarriage May 2007. Progesterone deficiency, dynamic/incompetent cervix, cerclage, bedrest, and IUGR. Alas, we made it!! Teo 7/15/2008, 08:01
PAISLEYSMAMA
Posts: 548
4/9/10 9:36 P
I know it has been ages since oyur last posts , but I wanted you to know if you are still on what a blessing this post was for me. My daughter is three and had her first endocrinologist appointment today. she is well below the charts on height 33 inches at three years and 25lbs. We have been worried about her growht for a while because she was born big 8 lbs 13 oz ans 21.5 inches and had hypoglycemia at birth and was in the NICU for it. She seems to have been dropping off the charts ever since. get comments all the time about how horrible it will be for her to have the shots if need be or to quit worrying she is just petite and it infuriates me! You women helped me so much first by understanding and second Mandy because even though it was not the smoothes beginning ( IV and crying) we have experienced all of it and it is wonderful to know something good could result on the other side!
Finnley James arrived January 19th. We are so happy to have our two beautiful little girls!
SUPRISE3FORME
Posts: 596
12/10/08 8:00 A
Jake is doing great with the shots - he is a total trooper. He says it doesn't even hurt and he loves the idea that it is going to make him bigger. Keep in mind that he is 8 and we have been working up to this for many years!! It has become just a part of our nightly routine just like brushing his teeth. I feel very lucky in that respect.
Baby Chace is doing great too! He measured 5lbs 7oz at 35 weeks so he is perfect size and growing normally. It is a relief to know that he is growing in there!!!
GGMOMMA - Trust me when I tell you that your sons growth delay has NOTHING to do with your parenting!! I gave Jake Pediasure for a long time and it really didn't make any difference in his growth. It has more balanced nutrition than milk so it is always a good idea to give him that little extra though. I hope all is well.
Edited by: SUPRISE3FORME at: 12/10/2008 (08:01)
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
MANDAS4KIDDIES
Posts: 1442
11/30/08 7:12 P
Hi Amanda,
how did the shots go? How is he/well all of you coping with them? Bree still puts up a fuss everynight while she gets it. She understands why she has to have it, but she doesnt like it! And yes she does say it still hurts, even after having them for over a year. Im glad all is well with your pg and your bubba is growing well. It makes you breath a sigh of relief doesn't it? I know how you feel.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SUPRISE3FORME
Posts: 596
10/22/08 4:51 P
Holy smokes that is a big baby! What a change it must be for you - way to go!!!
We are starting the shots tomorrow, I am excited and apprehensive. Jake is ready, so he says. A nurse is coming to train us on how to use the pen - do you use it? Does it really hurt?
The pregnancy has been totally great which of course scares the crap out of me. He is measuring exactly perfect so that is always a relief. I find I hold my breath every time she gets out the measuring tape, I just can't let go of the fear! I pray every night that he is fine and so far so good. Thanks for the good vibes!
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
MANDAS4KIDDIES
Posts: 1442
10/17/08 10:59 P
Good for you guys! Im so happy for you, and i am sending all the good vibes i can for it to work for your beautiful son.
As for us, our beautiful son arrived on my birthday, 10lbs 10oz, 21.5 inchs , after 2 hrs labour. His name is Tyson Daniel. So far a great baby. He is 3 weeks old now and 11lbs 1oz, 22 inches. He is growing really fast, which i hold my breath for after our first baby.
How is your pg going?
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SUPRISE3FORME
Posts: 596
10/9/08 7:20 A
Jake got approved! We will be starting the shots in another week or two. Please pray that they work for my boy.
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
MANDAS4KIDDIES
Posts: 1442
9/17/08 7:49 P
Amanda Im glad he is making the recommendation for you, and I pray for your insurance company to give you the thumbs up. Best of luck, and I hope its all a speedy process. You have one brave boy there, I hope it stays that way after he gets the first shot...LOL
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SUPRISE3FORME
Posts: 596
9/12/08 3:03 P
The appt went very well, as well as can be expected I guess. The Dr. did not think it is necessary to do the stim test because no other testing has shown him to be gh deficient. He said that he thinks he will benefit from the gh therapy (he is -3 off the charts) and is going to recommend him for the shots. We are now waiting to see if we will be approved by the insurance company and can start the shots. Please pray for us once again!
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
SUPRISE3FORME
Posts: 596
9/10/08 8:19 A
We are going today - I am nervous and excited all at the same time. I asked Jake what he was going to say to the dr. and he said he was going to tell him that he wants the shots. He even said he doesn't care if he has to go to the hospital for a test in order to get the shots! He is too funny. He really wants to do this so that is making it easier for my husband and I. We are way more nervous about it that he is!!! LOL Wish us luck. I will let you know what happens.
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
MANDAS4KIDDIES
Posts: 1442
9/4/08 5:57 P
Breanah had her growth clinic the other day and she has grown another inch in the past 11 weeks. Her weight gain (1 lb) was good as well. Any gain for her is fantastic.
I hope all goes well for you on the 10th. Good luck with the new Dr. I hope you get the go ahead for the shots straight away.
Best wishes heading your way.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
8/18/08 2:38 A
I hope the move went well and that you like the new Dr.
I too was shocked that when we started to talk to Bree about how she was smaller than the other kids and that she would need to have a shot everyday, just how aware she was that she was small for her age. She was only 2, but very aware of it. The other kids at daycare would call her baby evern though she was older than them and it made her very mad.
She is always so proud of her growth when we go to clinic every 3 months for her growth checks. She also loves it when she gets taller than one of the kids in her kindy class. It has boosted her self confidence sooooo much that dispite the fact that she still crys every time she has a shot even 1 year into it, I KNOW with all my heart that its the best thing for her.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SUPRISE3FORME
Posts: 596
7/31/08 11:27 A
She said his labs looked good and that his bones had aged a year which was also good. She wants him to have the stim test. We are moving tomorrow and he doesn't see his new dr. until sept. but she was going to send along her recommendation to him so my guess is we will do the testing in sept/oct and then start the shots as soon as we can after that.
We have talked to him about it quite a bit and he is totally on board with the idea. I honestly didn't know how much it bothered him to be the smallest all of the time. He never mentioned it until we started talking about the shots and then it was like a waterfall of information coming out of him. I feel bad that he never talked to me about it before - we never wanted to make a big deal out of it with him. I feel positive about the choice to do it now though, his reaction has totally proved to me that this is the right thing to do.
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
MANDAS4KIDDIES
Posts: 1442
7/27/08 9:44 P
Sleepless nights is right! I have had people acuse me of "doing it on purpose", like Im starving my little girl just so I can get attention or something....that to me is just nuts! Some people are just living in a world of thier own, and its that type of lack of knowledge that makes them say STUPID things.
Breanah has lost about a lb over the past month, and my MIL asked me if Im still feeding her on the special diet the Drs and nutritionist put her on!!! I could have just rung her neck, but I have to be nice, so I bite my tounge.
Let us know what your Dr said....
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SUPRISE3FORME
Posts: 596
7/21/08 11:06 A
Thanks Manda! I am so happy I found you guys. I totally know what you mean about the family not understanding, my mom cried last week when I told her about Jake getting the shots. I wanted to scream! Of course then her first question was - 'what if it doesn't work?' Again, I wanted to scream. It has been hard because you feel judged as a parent when your child doesn't grow. It kills me sometimes, like I don't want him to grow and be like every other kid his age!!! It is really nice to talk to someone who understands all of it, including the heart ache and sleepless nights wondering what did I do wrong?! I am actually going to call the dr. today so I will let you know what she says!
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
SUPRISE3FORME
Posts: 596
7/20/08 9:38 A
I am so happy that I stumbled on your posts! My son Jake who is almost 8 is the size of a 4 1/2 year old and has been in the -3% on the charts for many years. We had our annual visit to the endocrinologist last week and had blood work and an x-ray done. I am waiting to hear about the results. He has no health issues other than his stature and the doctor told us that he is a really good candidate for the shots. Reading all of your posts made me cry. I was on the fence about the shots but now I know we have made the right decision and we are going to go ahead with them assuming we get the all clear from the Dr. She seemed pretty sure that we would.
The pediasure and the butter in everything made me laugh because we had to do that too! i used to follow him around with the sippy cup and make him drink the pediasure! I tried everything to get him to eat more, I spent a fortune on food! Nothing worked.
I am not even sure why I came over to this area today but I am sure happy I did! Reading it really made my day.
Amanda
Jake Ryan 11/11/00
Alec James 8/20/04
Chace Matthew due 1/10/09
MANDAS4KIDDIES
Posts: 1442
7/12/08 11:21 P
Thanks Suzanne, Yes Bree is also on a fiber rich diet. We dont yet recieve any financial help for the Pediasure and the only one available to use is the one w/o fiber, because I have to get it off the self at the pharmacy. I am aplying for government assistance for some financial aid (we are in Australia) but there is a lot of red tape with have to get through. It cost us $35/week for Bree's Pediasure at the moment. And its money we just dont have. But to keep her weight going in the right direction, we have to find the money. Bree lost 400g (almost 1 lb) in the last 2 weeks, dont know why, but I think she is just having another huge growth spurt. She has gone up another size in her pants and shirts in the last few weeks. (twice this season)
Edited by: MANDAS4KIDDIES at: 7/12/2008 (23:23)
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
PSALM63
Posts: 649
7/9/08 10:08 A
Hi Ladies! I have been reading your posts and wanted to interject something that might help. My son (he is now 14 yo) was very small (11 lbs and 8 mos, 14 lbs at 16 mos, 45% below 0 on the charts for weight and 25% below 0 for height). He was tested for everything: celiac, CF, growth hormone, etc... they ended up concluding that he had malabsorption of fat. I wish I had that problem, LOL! :0) Anyway, they put him on a high protein and high fiber diet, including Pediasure, Carnation Instant Breakfast....all the things you were talking about in your posts. One huge thing I noticed with him was that I had to get the Pedisure with Fiber only. If I got regular Pediasure it was not helpful and I could see a difference, he would not gain any weight. He stayed on this until he was five yo and we no longer qualified for WIC. What a blessing it was that they covered that expense for us. Also, when he was on the Pediasure with fiber (4 cans a day) he did not eat well - probably full on liguid. And he would throw up alot. It got to be a habit that we would get to the end of a meal and he would gag and I would hold his plate under his chin so he could throw up. TMI, sorry! After he finished his years of this high calorie, high protein diet hi gained a TON of weight and went the other direction. He actually has a pooch on his tummy now. His is still a bit short for his age, and it bothers him. He turned 14 in May and is about 5'5". Alot of his friends are 5'8" and up. But he is healthy and that is all that matters. I just thought you might want to know how important getting fiber was for his weight gain. I know calories are a big deal: hot dogs, mac and cheese, pizza....but the fiber was the key for us. Blessings to you and your families! Suzanne
Suzanne
MANDAS4KIDDIES
Posts: 1442
6/11/08 12:25 A
Breanah had her 1 year check up today and she has had great results. Her bone age has reached 3 years and 1 month (she is 3 years and 7 months). She has now grown a total of 15.5cm or 6.1 inches. She has now reached 13.1 kg or 29 lbs. They are so happy with her progress that she is still on the same dose of growth hormone for at least another 3-6 months.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
5/16/08 7:17 P
manda,
I think she told me what %tile he was in, but I was on the third day of a migraine and it just didn't sink in. I know how much he grew, etc because she wrote it down.
I just get so mad at the one stupid doctor because he told me last time that if he upped cody's dose it probably would not get upped this time...but it did. he wanted to up it a pitiful 0.2mg when I pressed him to up the dose, but the cartridge we use only goes up in 0.4mg so he had no choice but to put it up by 0.4mg. at least this time they called me and asked permission for us to see him. I told them no and they asked why, and I told them that I don't like him!! then I requested to see the PA if I couldn't see the doctor we should see. I'm sure they ahve all kinds of nasty things written about me in the chart, but I don't care.
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
MANDAS4KIDDIES
Posts: 1442
5/16/08 6:24 P
Kristy If your son has come up through the %iles since his last check up I wouldnt be to concerned. I would be taking him to a specialist about his urine output though. I would be questioning it aswell.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
5/16/08 6:20 P
Sarah at least some growth is better than no growth. What %ile is he in now? He may just need an increase every 3 months. Bree is still shooting up on the same dose. I think her body is just reacting really well to the hormones. She has her 1 year check up next month! We will also get her bone x ray results then.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
KRISTYRE
Posts: 2558
5/16/08 1:17 A
So I had my son's three year check up and he is 29 pounds and 34 1/2 " putting him in the 3rd-4th% (not sure why they gave me a range)for his height and 25% for weight. At his two year he was 4th% for height.
She doesn't seem to be too worried because he is having growing pains and doesn't think that it is something to consider until he is much older. She doesn't expect him to be more then 5'5" by my husband and I's height normally anyway. That sort of made me feel bad. But isn't that even more of a reason. I don't think I totally agree with her. I know she is not fast to jump to conclusions or go to specialist unless we see how things go first if it's not emergent. Fustrates me sometimes. She tested his urine for some type of diabetes because he goes pee litterally 20 times a day and there is something that is linked to growth secretions or something. It came back negative. Says it's behavioral. I don't agree.
If my insurance covers specialists and I since I don't need a referral then I am going to take him to see a urologist. I will have to wait on the growth stuff because our Childrens hospital in Seattle is awesome but they require a referal by your pediatrician. So we shall see how things go.
I'm Kristy with Aiden (for facebook)
Makenna 5/01 8 lbs. 6 oz.
Blake 5/05 8 lbs. 9 oz.
Aiden 2/08 8 lbs. 15 oz.
MANDAS4KIDDIES
Posts: 1442
5/11/08 7:53 A
My little girl started to fall from the charts at 6 months old. She was born in the 75th percentile and by 6 months was in the 3rd. She was the size of an average 8 month old at 1 1/2 so proper investigation started to find out why. They started with her organs (stomach, heart, kidneys, liver) when after that she was sent to the endocrine specialists. After lots of testing and an MRI they discovered they her pituitary gland in the brain doesn't function properly causing her to be growth hormone deficient. She has what they call 'isolated growth hormone deficiency'. Her pituitary releases all the other hormones it is meant to, just not growth. She to had a very small apatite. It is markably improved now after almost 11 months of therapy. She is now 3 1/2 and she is 27 lbs and 40 inches. When she started the therapy she was only 17.5 lbs and 34 inches. ( 11 months ago )
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
KRISTYRE
Posts: 2558
5/2/08 1:00 A
Thanks for clearing that up for me. I will be sure to atleast ask the ped. at his check up and see where this heads us. Kristy
I'm Kristy with Aiden (for facebook)
Makenna 5/01 8 lbs. 6 oz.
Blake 5/05 8 lbs. 9 oz.
Aiden 2/08 8 lbs. 15 oz.
SARAHBRAUN
Posts: 1129
5/1/08 8:37 P
Cody is in his second year of growth hormone, and doing really well.We are taking it one year at a time.
We had no clue that he needed the hormones until he was about 10 years old. I got a call from the nurse at school telling me that he was off the bottom of the growth chart. she put me in touch with a health department program to do the tests for free. we got the tests done, and the diagnosis was idiopathic short stature.
your best bet is to get a referral to a pediatric endocrinologist for testing. you might want to check with your local health department and see if they have programs that you might qualify for. what the endo will do is look at his medical charts, and growth curve. they will do a medical history, and find out your height and your husbands. He will plot your son's height on a chart, and project what it will look like if he continues to grow the way he has. if he thinks that your son will be significantly shorter than he should be he might prescribe the hormones.
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
KRISTYRE
Posts: 2558
5/1/08 12:26 A
So I am wondering where you kiddos sit and at what point did the dr.s say to do growth hormones. My son turn three next week and everyone thinks he is the size of an almost two year old. My older daughter was way bigger then him. He is very active and was always way ahead of the game with language and dev. markers but he is a tiny thing. Some days he eats like a sparrow and now he is eating much more (which is still hardly anything) At his two year check up he was in the 4th% and we go in next week for his 3 year check up and I'm eager to see what is happening. I know he has been waking up with growing pains a lot the last two months but geez- he's 28 pounds soaking wet and 34". In the back of my head I think it is some what related to him having C Diff when he was about 6 months old and we didn't catch it for almost 6 months when I took him in because he had loose hanging skin on his armpits (it causes malabsorbtion). Before that he was a chunky baby with normal growth and I'm afraid that stunted him. My almost 3 month old is already 17 pounds. I give them till he's a year old and they will be wearing the same clothes!
So I was wondering when do the go from getting labled as "tiny thing" to "needing growth therapy"
Thanks, Kristy
Edited by: KRISTYRE at: 5/1/2008 (00:27)
I'm Kristy with Aiden (for facebook)
Makenna 5/01 8 lbs. 6 oz.
Blake 5/05 8 lbs. 9 oz.
Aiden 2/08 8 lbs. 15 oz.
MANDAS4KIDDIES
Posts: 1442
3/1/08 7:30 A
Sarah,
Congrats all round! That is great news about Cody's growth. And good on you for standing up to that Dr.
Good news for us, Bree has gained a whopping 2.5 lbs and continues to grow at a great speed. She has her official check up on the 18th of this month. I cant wait to see how tall she is now. Thanks so much for the advice, the pudding has worked really well.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
2/20/08 11:41 A
Manda,
we went back yesterday. For the first year of GH therapy Cody gained 15 pounds and grew 4.15 inches. The doctor told us that "normal" growth for this age group is 2-2.5 inches a year, so he almost doubled it.
Due to an emergency on the part of our regular doctor we HAD to see the mexican doc that got me so mad back in August. We waited 40 minutes past our appointment time, without being told that our doc was changed. I went out and talked to the staff and they explained the situation, so although I wasn't happy, I was OK. I also flat out told the doc that Cody grows best when his dose is upped EACH TIME he comes back. I showed him where Cody's growth was dramatically reduced after we saw him last time. He wanted to go up to 2.2mg, but that is not available on our current cartridge, so I convinced him to go up to 2.4mg.I feel good that I stood up to him this time.
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
SARAHBRAUN
Posts: 1129
2/5/08 3:06 P
Manda,
thanks. Cody is on 2mg daily of humotrope 6 days out of 7.
We go back to the doctor either on the 19th or the 21st.
sarah
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
MANDAS4KIDDIES
Posts: 1442
1/29/08 12:43 A
Hey, thanks for the tip, pudding is a good idea. I have my finger crossed for a nice growth spurt from Cody! We have to wait and see if they will reduce Bree's dose or keep it at the same level. Her next check is in March. Her dose is 2.1mg over 7 days, so 0.3mg per night.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
1/15/08 5:35 A
hey there Sarah,
Unfortunatly, We have tried all of those things with her. She is Lactose intolerent, but has been tested for all other potential problems(celiacs)and all came back clear. She is on a super high calorie diet, but she still has no apitite so she still only eats small amounts. They think that if she is getting a little too much GH then her metabolism will be working too fast for her to keep up with. It still doesn't explain the lack of apitite. But they are out of ideas when it comes to my darling daughter. I give her as much pediasure as she will drink in a day, and all the other food she consumes is just keeping her weight steady. Steady is better then backwards though. Thanks for all the sugestions! I will take anything I can. How is that young man of yours doing? How is his growth going?
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
1/10/08 7:41 P
hey manda,
man, that kind of sucks that her appetite disappeared. I don't think too high of a dose would do it. I would think too much GH would give her a huge appetite. I wonder if maybe it was just a bug? clay had one before halloween and didn't eat more than bites for about 5 days. Since bree is old enough to talk, ask her what she wants to eat, and make sure you have it on hand. Maybe if it is something she has picked it will be more appealing. Of course that means she might eat mostly PB&j or hotdogs or mac-n-cheese for days, but I figure calories is calories when you have one that won't eat. Maybe see if you can make her favorite flavor pudding or a milkshake with her pediasure. When my grandfather was dying he lost his appetite the last few months. He was getting so skinny that his blood pressure was too low. He LOVED milkshakes, but it was hard for grandma to take him out for them since he was on oxygen and had dementia. grandma made him milkshakes with full fat ice cream (you know, the premium kind)and ensure instead of milk. you could even throw in frozen bananna, or berries too.
hope these ideas work. Hey, just a though, but does bree get belly aches after eating certain foods? I think one of the signs of celiac disease is weight loss. If she can't tolerate gluten,and her belly hurts when she has it, she may not want to eat even when she is hungry
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
MANDAS4KIDDIES
Posts: 1442
1/8/08 6:32 P
Hi Sarah,
That is funny....our 16 month old is insisting on pretend shot too! lol She lifts up her shirt and sticks out her belly.
Bree was put on a high calorie diet, with pediasure, and powdered calories, iol and butter added to everything, but it has made no difference to her weight issues. She has just had blood work done to determine if she is on a dose of GH that is too much for her. She has grown just shy of 4inches in 7 months now. She is now in a percentile! Horay! She has been below the percentiles since 7 months old. She is still only 22 lbs.
She was in hospital on a feeding tube for 3 weeks pria to Christmas. She had almost stopped eating entirely and was losing weight again. She was let out 2 days before Christmas. She is doing a little better with her food, but her Endo is puzzled as to why she has less of and apitite instead of an increased one. Hopefully the blood work will give us an answer soon.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
12/1/07 8:12 P
Manda,
I have to tell you the funniest thing. My 2 year old has INSISTED on getting "shots" for the last few months. He lays down on the bed and presents us with his leg or hip. We give him his "shot" with the covered needle.
The last time I took Clay to the doctor he got his chickenpox shot. He was standing on the exam table when they came in to give him the shot. The nurse asked me to hold him, and I gave him a big hug. The nurse asked if he would be okay like that. I told her yeah. She gave him the shot, and he literally said "uh" and didn't even twitch. she was in total shock. I totally attribute it to his pretend shots.
have you tried pediasure instead of milk...it has more calories. I used to give DD carnation instant breakfast in her milk. she was so little. At 18 months old I don't think she was more than 16 or 17 pounds.
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
MANDAS4KIDDIES
Posts: 1442
9/18/07 7:26 P
The MRI WAS CLEAR!
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
9/12/07 7:45 P
Yes, she has grown. She is now 2.1 inches taller in 13 weeks! She has gained NO weight in the last 9 weeks. That explains why all of her pants are falling off of her as she walks.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
9/10/07 10:34 P
Her 3 month check up is later today so I will let you know how she goes. She has her repeat MRI this week also.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
9/6/07 11:51 P
Wow Cody! Thats fantastic.
Thanks for the advice on Bree's shots. We have tried to explain them to her and we did try the reward system aswell....no luck. She made it one night without fighting. When I explained what the shots were for she just simply told me that she would rather stay small than have the shots. We have told her that she is extra special, and that why she get the extra special medicine needles, but she doesn't care. She just doesn't want them. Im sure with time she will come around. I cant see her still fighting after say...1 year! lol See has her first check up next week....the first 3 month one. I cant wait. My little girl is growing! I have noticed just how much more energy she has. She was never what i would call a very active toddler. But now there is no stopping her. I do need to ask her Dr about some insomnia she has been having though?????? Her blood sugars seem to be under control finally. So that is a huge positive.
Why no increase in dosage for Cody do you think? Was it just the stuff around with a new Dr? I dont mind listening if you need to vent. Heaven knows I do it to you enough! lol
Thank you for still replying to me...
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
8/18/07 6:19 A
hi Sarah
it was good to see your post. Bree is still fighting us every night on the shots issue...she just wont give in yet. She has he 3 month check up in just over 3 weeks. Hers are every 3 months also.
Has Cody had his 6 month appointment yet? How did he go?
Bree has now had 7 teeth bust through in the last 7 weeks. Poor thing. She still has no increase in appetite yet. But her arms have certainly lengthened. Her shirt sleves are getting short! I cant wait to see how much she has grown.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
7/27/07 9:50 P
Manda,
sorry it has taken me so long to get back to you. We have had a rough 6 weeks or so, and the computer was having a tantrum!
Cody was on an ADHD medication that reduced his appetite during the day, but when it wore off he ate everything in site. We had to take him off that medication due to some side effects, so he eats pretty good all the time now. I think it was 4-6 weeks before we saw a moajor change in his appetite. I wouldn't expect a child her age to suddenly eat like an adult or anything, but she might need an afternoon snack and evening snack that she would not have needed before the shots.
I'm glad you finally brought yourself to do the shots. Like I said before, you never know when someone will be sick, hurt, or need to travel for work. HAving 2 people who know how to give it just makes the job easier.
You will really see results when she goes back for a follow up visit. Cody goes every 3 months. After the first 3 months he had gained 5 pounds and grown most of 2 inches. That was easily 6-9 months growth for a normal 11 year old. We go back in another few weeks for his 6 months on the shot visit. We're hoping to break the 60lbs mark and maybe have another 2 inches in height.
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
MANDAS4KIDDIES
Posts: 1442
7/10/07 7:58 P
Well the MRI came back inconclusive so we have been put on the list for another one now. I started giving the shots! I have given her one everynight for the past 8 days. She was starting to really fight DH for some reason. She put up so much of a fight that she bent the needle! She has gotten 2 more teeth in the past 4 weeks..gained 1.3lbs. She isn't eating much more yet. Dinner I think is the best increase of appitite. I never give her a lot, and she still never even eats half, but she has started to almost finish. How long did it take before you started to see big changes in Cody? We have been on the hormone now for a month.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
6/24/07 2:13 P
manda, I'm glad you got it started finally. I know the way you are feeling. you have to be strong though. set a goal for yourself to give Bree that shot once a week yourself. you have to be able to do it....what if DH can't be there for some reason?
be prepared for an increase in appetite as the hormones kick in. Cody eats like 2 bowls of cereal, plus a few pieces of string cheese or a hotdog for a bedtime snack. plus he eats 3 meals and an afternoon snack.
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
MANDAS4KIDDIES
Posts: 1442
6/12/07 7:55 P
My day yesterday was so good and bad at the same time. I took Bree in for her clinic check up. We got there and all was completely normal, weight and height checks(no change) and then one of her Dr's say "you can pick up the growth hormone and the neddle pen at the pharmacy on your way out of the hospital". WOW... it had been aproved and distrubuted from Canberra all in 2 weeks. It was the best news ever. We could start the therapy today. Then it hit me, I had to give her a neddle TODAY! I didn't just have to think about it, but actually do it. I wasn't prepared to do it for weeks yet.... Anyway, It got to bed time last night and it was time.... I took a deep breath, got bree to lay across my lap with bare bum up, then I freaked out....I couldn't do it! Luckily Daniel (my hero) stepped straight over, grabbed the neddle and gave it to her like he had done it a million times. What would I do without him? She cried, but no real tears! She was a brave girl. She asked me if she would need another one and when I explained it would be every night from now on, she didn't look to impressed, but Im sure she will do just fine, and I will to...eventually. Until then Daniel says he will gladly give the neddle every night.
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
6/8/07 11:47 P
The MRI is on the 22nd of this month. The dr's are now saying that the likelyhood of a pituitary tumor is quit high....I pray they are wrong. Although the tumor would be binign, she would still need surgery and radiation therapy. This is so scary!
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
6/1/07 6:54 P
Well got back some of the results, and yes she is GHD. They are looking into all the reasons as to why now.... She has the MRI in 4 weeks to rule out tumors and take a look at the gland. But she also has facial charactoristics of a child with Growth Hormone Reseptor Deficiency. Yeah for us! She now has 9, yes 9, endocrine Dr's. They are all interested in her case and have requested to be part of it. Lucky Bree is a princess and just loves all of the attention! lol
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
5/31/07 6:21 A
Well thursday was complete hell. We never want to go through that again. We got to the hospital at 730am. She was seen by the nurses for height and weight check. Then they told us because Bree has such TINY veins, they had to call up a anesthesiologist. He came in with an ultra sound machine to help him find a vein. He found only two possible sites, and then started to try for the best one. After probing in her arm with a sharp needle(lots and lots of screaming and tears) for a good 20 mins, he said he wasn't willing to try any further unless she was under a general anesthetic.(would have to come back in a few weeks for that) After that, three Dr's and two nurses sat down to have a meeting about Bree to determine the best approach. It was determined that they would give it one last try to get the drip cannula in or at least draw some blood. She was warmed up with heat packs to the point of sweating and then Dr Carol tried again. It took 4 of us to hold her down. And with a lot of luck on our side she got it in! The test evolved putting her on a drip for an hour and drawing blood every 15 mins for a further 2 1/2 hours. Every time they went near her arm she just screamed. Her glucose levels dropped to the danger level and she had to be given a glucose dose intravenously to bring her levels back up. Her heart rate went through the roof a few times and then her levels dropped again. She then flinched the wrong way while one of the nurses was taking blood and the cannula came out. She had to go through the whole horrible process of getting another one put in. Again it took 4 of us to hold her down. But Dr Carol managed somehow to get one in. They started the second test which involver getting a needle in the thigh. Then blood was drawn every 30 mins. She had a nasty bought of vomiting and her glucose levels dropped again toward the end so it was decided to stop the test with only 1 sample to go. The Dr's all said they had enough info to work on. She was such a brave little girl. But I don't think she will be keen to go back to the hospital in any hurry. We got to leave the hospital at about 330pm. She was bruised and a little tied for a few days but otherwise fine. I have to do regular Blood sugar level tests on her until our next appointment(Thursday this week) by giving her a finger pin prick. They gave me a glucometer to use. She has been low nearly every morning. She will have to have a MRI soon so they can get a look at her pituitary gland. But we dont have any dates yet. Anyway, Nothing you haven't been through I guess. I will keep you up to date as we get the results
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
MANDAS4KIDDIES
Posts: 1442
5/22/07 7:52 P
Wow, thats fantastic! Bree's test is tomorrow! Is it stupid that I am actually looking forward to it?
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
5/21/07 9:08 P
IN 13 weeks he gained 5 lbs, and grew 1.75 inches. Normal growth for his age is 2.5 inches for the whole year!
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
MANDAS4KIDDIES
Posts: 1442
5/8/07 8:24 P
Im glad Im not the only one who has to give shots. We will have to give DD a nightly shot 7 days a week for the next 11 years. Eventually she will give herself the shot but until then its up to me. Was it hard in the beginning? She has her test in two weeks to see exactly what dose and hormones she requires... Finally!
~Manda~
~Angel baby ~ 16th July 1997
~Angel baby~ 6th Jan 2004
~Angel baby~ 30th March 2007
~Angel Baby~ 4th May 2007
SARAHBRAUN
Posts: 1129
5/5/07 11:05 P
my 11 year old has idiopathic short stature. Basically he grows really slow and they have no clue why. He has been slowly falling down the growth charts for years. When he fell below the third percentile we realized there really was a problem. Back in January he started on Humotrope. It is a shot 6 days a week given in the fat of the arm, thigh, hip, or belly. It is a small needle, usually used for insulin. we give it to him ourselves. We go Tuesday to find out how much he has grown in the past 3 months. I'm pretty sure he has gained 10 pounds, but I'm not sure how many inches he has grown. His appetite has gotten bigger. NOrmally he eats 4 meals a day anymore. breakfast, lunch, dinner around 5:30 or 6pm, then around 8-9 he is ravenous and eats basically another meal.
Clayton Daniel is here!
born Nov.2 @5:08 pm
7lbs, 2oz 21 3/4 inches
DS 1/17 1996 DD 2/09/00
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