I have been lurking on the board for a week or so. Finally go the nerve to sign up, then posted and was referred here!! So here goes.... Hopefully I do this right!?!?!?!?
The who: Hello. My name is Amy. I am the mother of four wonderful kids and Navy wife to my high school sweetheart. Our oldest son is 15, our wish kid is 12 then we have 2 more little guys 4 and 6 months.
The Why: My daughter was diagnosed almost 2 years ago with Indeterminent Inflammatory Bowel Disease. Although, they are now saying Crohn's. She has had symptoms since she was 2 and it took 8 years and A LOT of doctors to finally figure out what was wrong. Allison has always been a trooper. Happy and goes with the flow. Rarely did she complain, but when she did.....you knew she was sick.
She doesn't have the "normal" symptoms most people have with Crohns. She has mostly suffered with Oral lesions (apthous ulcers) beginning at 2 years of age. She was first hospitalized then for severe dehdydration. She would continue for the next few years to have occasional sores in her mouth. Pediatricians and dentists said just watch what she eats there is nothing more to do. When she started school the sores became more frequent and she would have more and more at the same time. So begins the referalls to numerous specialists and many oral treaments and magic mouth washes. NOthing worked. In Sept 2008 she was referred to her GI dr. She had not grown in the past year and actually started to lose weight. They did a work up for IBD and other than her Inflammatory marker being elevated he didn't think it was IBD. So again..... we are on our own. At this point she has NO Days between sores. They are constant and at varying stages. Normally having 10 or more at a time (sometimes they would get big enough that 2 became 1 large one) She can't eat, can barely talk. Her meals consisted of Pediasure, applesauce, pudding....
November 2008 comes and so does the severe chest pains and fast pulse. Within 3 days she was in the ER 3 times for her heartbeating very fast and chest pains. No diagnosis. Referred to Pediatric cardiolgist with a halter monitor. Of course no repeats during this!! Then the abdominal pains began. Not little ones, NO she needed 2-4mg of Morphine to help with the pain. After several trips to the ER and pediatrician, back to the GI doc we went. After the "normal" crohns symptoms started, he decide to do her first EGD/Colonoscopy. Finally some answers. They think she has Inflammatory Bowel Disease. Once diagnoed, she was started on medications right away specifically for the Inflammatory Bowel Disease. The first few treatment plans did not work or caused additional problems. She started Prednisone in January of 2009 because she was still having so many sores in her mouth. We also were refered to Oral surgeons to do biopsies. Around this time she started with nasty productive cough and they didn't want to used sedations, so my strong girl stayed awake and did the surgery under local anesthesia!! The results.. inconclusive.
After 4 or 5 attempts to wean off prednisone they decided it was time to try something new. This is Sept 2009 and she ended up on Remicade. Finally after a year on prednisone she was weaned. Just in time for Christmas!! What better gift! She has now been getting remicade for 14 months. She just had her second EGD/Colonoscopy. We didn't get the best news and it looks like her Remicade is not working!! They are giving her one more chance at the max dose of Remicade. If that doesn't work we need to try something new. She has several other issues that go along with Autoimmune diseases as well as chronic upper respiratory and sinus infections. ( Back In January she was to have the oral surgery but couldn't be sedated because of her respiratory status) She has been on antibiotics for months at a time for these URI. Tons of labs, xrays, IV's ......
That's the nutshell anyway. So here we are!!
Where Make Wish comes In: She was referred to MAW by the nurses in her hematology/oncology treatment center. It took quite a while to hear anything back (MONTHS) because the doctors papers "didn't make it back" to MAW. Once they got them, it has moved VERY quickly. We got the letter in the mail that our Volunteers would be calling. Less that 2 hours after opening the mail they called. They were at our house 2 weeks later. They brought Allison a MAW barbie!! So cute. It is displayed on a shelf in her room. More paper work, birth certificates, more papers for the dr. Which by the way, her dr. was deployed very suddenly to Afghanistan in October. So the one doctor that finally figured out what was wrong AND gave her quality of life back..... is now gone. But that's a whole other story. So the papers again finally make it back to MAW. Our Wish Granter calls and literally wanted us to leave in 2 weeks from when everything was approved. (Which would have been today)
Her first wish was to meet Harry Potter's George and Fred. We were told we would have to be willing to leave within 48 hours of being notified, which with a Sailor you just can't do. Her second wish was to go to The Wizarding World of Harry Potter. They decided to have us go to GKTW and visit the Orlando parks, which includes IOA where Harry Potter is. She is a huge Potter fan.
Our trip is December 12-18. She is so excited!! And we are all excited as well. We LOVE Disney!! LOVE LOVE LOVE it!! DD LOVES Tink
Even at 12 still has alot of her in her room!! We have nothing specific planned at this point.. just to kinda go with the flow.
I feel like I just said so much, but yet it isn't nearly our whole story!other It doesn't even go into the kiddos or my husband or I So happy to have found this board!! YAYAYAYAYAY
Please help us plan!!
The who: Hello. My name is Amy. I am the mother of four wonderful kids and Navy wife to my high school sweetheart. Our oldest son is 15, our wish kid is 12 then we have 2 more little guys 4 and 6 months.
The Why: My daughter was diagnosed almost 2 years ago with Indeterminent Inflammatory Bowel Disease. Although, they are now saying Crohn's. She has had symptoms since she was 2 and it took 8 years and A LOT of doctors to finally figure out what was wrong. Allison has always been a trooper. Happy and goes with the flow. Rarely did she complain, but when she did.....you knew she was sick.
She doesn't have the "normal" symptoms most people have with Crohns. She has mostly suffered with Oral lesions (apthous ulcers) beginning at 2 years of age. She was first hospitalized then for severe dehdydration. She would continue for the next few years to have occasional sores in her mouth. Pediatricians and dentists said just watch what she eats there is nothing more to do. When she started school the sores became more frequent and she would have more and more at the same time. So begins the referalls to numerous specialists and many oral treaments and magic mouth washes. NOthing worked. In Sept 2008 she was referred to her GI dr. She had not grown in the past year and actually started to lose weight. They did a work up for IBD and other than her Inflammatory marker being elevated he didn't think it was IBD. So again..... we are on our own. At this point she has NO Days between sores. They are constant and at varying stages. Normally having 10 or more at a time (sometimes they would get big enough that 2 became 1 large one) She can't eat, can barely talk. Her meals consisted of Pediasure, applesauce, pudding....
November 2008 comes and so does the severe chest pains and fast pulse. Within 3 days she was in the ER 3 times for her heartbeating very fast and chest pains. No diagnosis. Referred to Pediatric cardiolgist with a halter monitor. Of course no repeats during this!! Then the abdominal pains began. Not little ones, NO she needed 2-4mg of Morphine to help with the pain. After several trips to the ER and pediatrician, back to the GI doc we went. After the "normal" crohns symptoms started, he decide to do her first EGD/Colonoscopy. Finally some answers. They think she has Inflammatory Bowel Disease. Once diagnoed, she was started on medications right away specifically for the Inflammatory Bowel Disease. The first few treatment plans did not work or caused additional problems. She started Prednisone in January of 2009 because she was still having so many sores in her mouth. We also were refered to Oral surgeons to do biopsies. Around this time she started with nasty productive cough and they didn't want to used sedations, so my strong girl stayed awake and did the surgery under local anesthesia!! The results.. inconclusive.
After 4 or 5 attempts to wean off prednisone they decided it was time to try something new. This is Sept 2009 and she ended up on Remicade. Finally after a year on prednisone she was weaned. Just in time for Christmas!! What better gift! She has now been getting remicade for 14 months. She just had her second EGD/Colonoscopy. We didn't get the best news and it looks like her Remicade is not working!! They are giving her one more chance at the max dose of Remicade. If that doesn't work we need to try something new. She has several other issues that go along with Autoimmune diseases as well as chronic upper respiratory and sinus infections. ( Back In January she was to have the oral surgery but couldn't be sedated because of her respiratory status) She has been on antibiotics for months at a time for these URI. Tons of labs, xrays, IV's ......
That's the nutshell anyway. So here we are!!
Where Make Wish comes In: She was referred to MAW by the nurses in her hematology/oncology treatment center. It took quite a while to hear anything back (MONTHS) because the doctors papers "didn't make it back" to MAW. Once they got them, it has moved VERY quickly. We got the letter in the mail that our Volunteers would be calling. Less that 2 hours after opening the mail they called. They were at our house 2 weeks later. They brought Allison a MAW barbie!! So cute. It is displayed on a shelf in her room. More paper work, birth certificates, more papers for the dr. Which by the way, her dr. was deployed very suddenly to Afghanistan in October. So the one doctor that finally figured out what was wrong AND gave her quality of life back..... is now gone. But that's a whole other story. So the papers again finally make it back to MAW. Our Wish Granter calls and literally wanted us to leave in 2 weeks from when everything was approved. (Which would have been today)
Her first wish was to meet Harry Potter's George and Fred. We were told we would have to be willing to leave within 48 hours of being notified, which with a Sailor you just can't do. Her second wish was to go to The Wizarding World of Harry Potter. They decided to have us go to GKTW and visit the Orlando parks, which includes IOA where Harry Potter is. She is a huge Potter fan.
Our trip is December 12-18. She is so excited!! And we are all excited as well. We LOVE Disney!! LOVE LOVE LOVE it!! DD LOVES Tink
Even at 12 still has alot of her in her room!! We have nothing specific planned at this point.. just to kinda go with the flow.I feel like I just said so much, but yet it isn't nearly our whole story!other It doesn't even go into the kiddos or my husband or I So happy to have found this board!! YAYAYAYAYAY
Please help us plan!!
I see everyone's awesome plans and GREAT pics. I have some work to do!
Sad that your friend had to go through that for so long, and end up with what everyone tries to prevent. We actually just got back from seeing the Gastroenterologist. BOY OH BOY!! That traffic was terrible, and the baby cried 1/2 way home. We were given a lot of new info today. (This is a new dr) He is very nice, and seems to genuinely want to help. He has some new thoughts and wants to test her for a few more things that have been checked yet. He also wants to see if her cortisol levels are low in the morning and that is why she has been sooooo tired lately.
