Since our last visit, Pumpkin had scopes and pill cam in the spring, which were normal. They did not start her on any new meds, but called it IBS, which in my opinion means "I Be Stupid" and diagnosis the doctor, not the patient. It means they really don't know why they are still suffering. They gave her Anaspaz and later another antispasmodic that starts with a d, that isn't coming to my brain just now. Both were not really helpful, and both lowered her seizure threshold to the point of breakthrough seizures. Recently, she had a Lactulose breath test and was diagnosed with SIBO (small bowel bacterial overgrowth) and she is now on Flagyl (metronidazole) for 10 days. Hopefully that will cure her, or at least fix her GI wise for a long stent. A few weeks ago, she was hurting so bad that we had to take her to the ER. She got better during the night, but had another seizure while there, and had to stay for a 24 hour video EEG, which did not catch any more seizure activity. More on this later.
Pumpkin tried to work this summer, but her health problems and frequent abdominal pain proved to be too much. She frequently had to lay down, and one of her legs swelled up abnormally.. She had to have the following tests: MRI of her lumbar spine to rule out spinal shearing. It was normal. Two spinal xrays, one said scoliosis, but second one normal. She saw a neurosurgeon and an orthopedist, which ruled out those conditions. She had a leg ultrasound, ECG and saw a cardiologist for her swollen leg. It ended up that she has primary lymphodema in her leg and has to wear compression stockings on her left leg day and night for the rest of her life. She saw a lymphedema clinic for this, and had a few visits to Peoria to get measured and fit for the stockings.
In August Pumpkin went to Wisconsin for Camp Oasis. She loved it. However, she had recently seen her GI, who upped her antispasmodic to four times a day. She ended up having seizures two nights in a row, and they asked me to come get her. This made me incredibly sad for her, because she couldn't even get a break when she was surrounded by doctors and nurses at a camp for kids with Crohn's. Hindsight, I think the increased dose of her antispasmodic triggered the seizures. She continues to have seizures about once a week, but I can usually attribute it to some trigger: sleep deprivation, taking Flagyl, taking an antispasmodic, etc. She sees a pediatric neurologist at the end of the month to discuss her seizures.
This summer she had problems with her asthma. She was on prednisone for 12 days to help diagnose it. She seems to be doing well on Symbicort now and rarely needs her albuterol inhaler any more. She was finishing up her prednisone last month when she went to the hospital. The prednisone had made her constipated too, which is really abnormal for her. She also was pricked 69 times for allergy testing and saw the allergy and asthma doc 3 times over the summer.
Finally, I think, she also saw a counselor several times in August and September. I don't think we ever really connected very well with her, and with all her other stuff going on, we just stopped going.
I guess that
Sunday, October 11, 2015
Thursday, March 12, 2015
Changes in Doctors, looking at possible changes in schools
As you probably read into my last post, I wasn't happy with the responses I was getting from our previous peds GI. He didn't seem to think that Pumpkin had a problem. Pumpkin wouldn't talk to him either because he was a man, and foreign and older. I think he intimidated us and we didn't really feel he was listening to us.
Last month we visited a new GI in Chicago. It is a much longer commute, but we liked her very much. She listened to us and brought us into what she was thinking and planning, which is right along the same track as I. I hoped that she would want to repeat her scopes and see that Pumpkin was not in remission and give us hope that we could make some changes in her regimen. She didn't have Pumpkin's records from her previous GI, but promised to look them over and planned an upper GI and colonoscopy, which we will do next week. She also is considering pill cam again, since that is what showed most of Pumpkin's inflammation last time. She seems to be treating Pumpkin as a whole and not just her numbers, which have never been very impressive. I'm thrilled!
Other IBD kids on the forums all seem superkids with amazing stories and seem to come through everything shining like some super hero. We're having more of a struggle when it comes to high school.
Pumpkin has always struggled to keep up with school. She is a bright girl and catches onto concepts quickly. Problem is: she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying. She struggles mainly with two aspects of school: taking notes and writing. She is a slow writer. Getting concepts from her brain onto paper takes a long time. If you ask her the same question she'll tell you the answer orally without any problem. I will admit, I've been lax on making her do the written stuff, because I feel that it would be impossible for her to keep up with it all. Now she is finishing her freshman year and I hear her saying things like, "I don't think I can do ________" because I won't be able to go to college anyway. She thinks college will be too hard for her. I don't know how to help her. I brought her home this semester halfway through the year because she was so miserable. Granted she did pull off As and Bs last semester at her private school. However, the stress seemed to be making her Crohn's worse and worse. I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc. That would definitely put her over the edge.
We went last week and took a look at the public high school. My oldest daughter wants to transfer there for more opportunities for different classes. Pumpkin, on the other hand, is not so sure. I'm not so sure! It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good... They aren't taking her homeschool class credits this semester (English, History and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...). I'm not sure what to do. I have these options: 1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.
Thanks for any advice or encouragement you may have!
Last month we visited a new GI in Chicago. It is a much longer commute, but we liked her very much. She listened to us and brought us into what she was thinking and planning, which is right along the same track as I. I hoped that she would want to repeat her scopes and see that Pumpkin was not in remission and give us hope that we could make some changes in her regimen. She didn't have Pumpkin's records from her previous GI, but promised to look them over and planned an upper GI and colonoscopy, which we will do next week. She also is considering pill cam again, since that is what showed most of Pumpkin's inflammation last time. She seems to be treating Pumpkin as a whole and not just her numbers, which have never been very impressive. I'm thrilled!
Other IBD kids on the forums all seem superkids with amazing stories and seem to come through everything shining like some super hero. We're having more of a struggle when it comes to high school.
Pumpkin has always struggled to keep up with school. She is a bright girl and catches onto concepts quickly. Problem is: she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying. She struggles mainly with two aspects of school: taking notes and writing. She is a slow writer. Getting concepts from her brain onto paper takes a long time. If you ask her the same question she'll tell you the answer orally without any problem. I will admit, I've been lax on making her do the written stuff, because I feel that it would be impossible for her to keep up with it all. Now she is finishing her freshman year and I hear her saying things like, "I don't think I can do ________" because I won't be able to go to college anyway. She thinks college will be too hard for her. I don't know how to help her. I brought her home this semester halfway through the year because she was so miserable. Granted she did pull off As and Bs last semester at her private school. However, the stress seemed to be making her Crohn's worse and worse. I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc. That would definitely put her over the edge.
We went last week and took a look at the public high school. My oldest daughter wants to transfer there for more opportunities for different classes. Pumpkin, on the other hand, is not so sure. I'm not so sure! It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good... They aren't taking her homeschool class credits this semester (English, History and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...). I'm not sure what to do. I have these options: 1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.
Thanks for any advice or encouragement you may have!
Saturday, January 31, 2015
January 29 Office Visit
So we went to see the GI again. He didn't seem at all concerned with Pumpkin's symptoms. He said she looks good because her weight is "10%-ile". I tried to point out that her BMI is not normal because her height is 94%. He seemed happy because the BMI was 14. I guess he doesn't look at percentiles like her pediatrician. Her BMI is "0%ile". He didn't have much to say about her bleeding after insisting that she must have been constipated, although she wasn't and hasn't been. He discussed meds to increase her appetite and nutritional shakes. He doesn't remember that she has done all that. He brought up G-tube. Not an option yet as far as we're concerned. He finally brought up an option I was hoping for - rescoping. We'll do it on Tuesday. I am hoping for a clearer picture of what is going on inside after 2 years of treatment. I don't expect a whole lot since most of her disease is in her small bowel where the scopes can't see it. I think we're ready for a major med change. Something has to be better than this. Remicade? Regardless, I am also doing research on some major diet changes.
Oh, and the "Calm" supplement seems to be helping. She is getting to sleep easier.
Oh, and the "Calm" supplement seems to be helping. She is getting to sleep easier.
Wednesday, January 28, 2015
2 years after Diagnosis
Pumpkin is now 15 and has had a fairly good year until recently. She did not have to get the g-tube and we stopped talking about that at the GI since she had gained so much weight on her own.
In August Pumpkin moved to Illinois, and I moved 3 months later. This was a rough transition. She came down with her dad so she could start high school at the beginning of the year. I had to stay until I could sell my house, so I could keep working and make the mortgage payments. Pumpkin grew a few inches, and still seems to be growing. She hasn't had menarche. She gained up to 99 lbs (9 lbs more than last year at this time), but I think that is starting to fall off again. I think her BMI is falling off too.
Last month labs looked okay, but her folic acid was low and her RBCs were big. This is new for her. This month she is having a lot of abdominal pain again :(, painful BMs and blood when she wipes. She is having more abdominal pain and lack of appetite. We see her new doctor tomorrow, so I'm hoping for a colonoscopy to be scheduled. She hasn't had scopes since 12-2012 when she was diagnosed. My feeling is that we need to adjust her medication or change it. We did try an IBS med, Anaspaz, which helps with symptoms temporarily, but doesn't explain the blood.
We've just started (2 nights ago) a multivitamin called Calm Multi for Kids, which has magnesium to help with sleeping, but it hasn't helped her yet. Her 17 year old sister was helped by it both nights though. I'm not sure if she is just not processing it well or what... I like that it has fruits and veggies, omegas and is liquid for better digestion.
I'll try to post again after tomorrow's appt.
In August Pumpkin moved to Illinois, and I moved 3 months later. This was a rough transition. She came down with her dad so she could start high school at the beginning of the year. I had to stay until I could sell my house, so I could keep working and make the mortgage payments. Pumpkin grew a few inches, and still seems to be growing. She hasn't had menarche. She gained up to 99 lbs (9 lbs more than last year at this time), but I think that is starting to fall off again. I think her BMI is falling off too.
Last month labs looked okay, but her folic acid was low and her RBCs were big. This is new for her. This month she is having a lot of abdominal pain again :(, painful BMs and blood when she wipes. She is having more abdominal pain and lack of appetite. We see her new doctor tomorrow, so I'm hoping for a colonoscopy to be scheduled. She hasn't had scopes since 12-2012 when she was diagnosed. My feeling is that we need to adjust her medication or change it. We did try an IBS med, Anaspaz, which helps with symptoms temporarily, but doesn't explain the blood.
We've just started (2 nights ago) a multivitamin called Calm Multi for Kids, which has magnesium to help with sleeping, but it hasn't helped her yet. Her 17 year old sister was helped by it both nights though. I'm not sure if she is just not processing it well or what... I like that it has fruits and veggies, omegas and is liquid for better digestion.
I'll try to post again after tomorrow's appt.
Saturday, February 1, 2014
I year after diagnosis
Here we are a little over a year from our diagnosis - so glad to no longer be where we were a year ago - freaked out and at the beginning of our journey into the unknown...it was all so scary then, and I'm so glad to be past all of the first year's terror!
Pumpkin is 22 lbs heavier now (almost gained 1/3 of her starting weight), she has no abdominal pains, she likes to eat (in her own unique way), she seems content and ornery as ever (maybe even moreso), and is coming into her own personality. I would like to see her gain another 30 lbs, but I'm glad to be doing better than ever since she was a tiny kid! She hasn't had seizures except when given meds that lower her seizure threshhold.
She is seeing a counselor now, which is going well, for her anxiety about food and Crohn's related stuff. She is also working on social anxiety regarding peer relationships. Hopefully they can find a way to help her sleep like a normal person soon too. She has a terrible time getting to sleep.
Next month we see the peds GI again. I'm a little apprehensive, as she has been pushing for Pumpkin to get a G-tube. The thought of this freaks Pumpkin out, and is her #1 fear, according to the psychologist. The psychologist even went as far as to say as pushing Pumpkin to get the G-tube would be traumatic to her and probably life-altering in a very bad way. The last time I spoke with the GI, she pretty much said that any weight loss was too much at this point and unacceptable, at that point she weighed 95 lbs, but since then she had a tonsillectomy, lost 8 lbs and has gained 2 back in the past month. We've tried two different appetite enhancers which both set off her neuro system negatively after once dose (seizure and pre-seizure symptoms). She has given up on Ensure and Peptamen Junior - so sick of them! NG tube was a traumatic experience too. Right now she is eating food and drinking Carnation Instant Breakfast for supplementation. She has started a swimming program and doing other PE activities about 4 hours a week. I'm thrilled to see her building her exercise tolerance to be able to do this, but it isn't helping her gain weight.
I'm to the point of pretty much telling the GI that a G-tube is off the table, and if she wants to help Pumpkin, she'll have to find another way. I know her heart is right, but I can't use fear as a motivator for Pumpkin - she doesn't work that way - and unless Pumpkin takes a terrible turn for the worst and we don't have any other options, we're not even going to talk about it any longer.
Has anyone else faced this issue with their GI and told them that a G-tube wasn't an option when they were feeling pressured to go that direction? If so, how did it go?
Lastly, I'm thinking strongly about enrolling Pumpkin in a charter school program we have in our public school system where she will be working with other kids, but working at her own pace on the things she needs to meet school standards. I think it will be a good situation for her - I just hope the anxiety of doing something different won't set her too far back health-wise...
I guess that is my update. Thanks for reading, if you made it this far!
Pumpkin is 22 lbs heavier now (almost gained 1/3 of her starting weight), she has no abdominal pains, she likes to eat (in her own unique way), she seems content and ornery as ever (maybe even moreso), and is coming into her own personality. I would like to see her gain another 30 lbs, but I'm glad to be doing better than ever since she was a tiny kid! She hasn't had seizures except when given meds that lower her seizure threshhold.
She is seeing a counselor now, which is going well, for her anxiety about food and Crohn's related stuff. She is also working on social anxiety regarding peer relationships. Hopefully they can find a way to help her sleep like a normal person soon too. She has a terrible time getting to sleep.
Next month we see the peds GI again. I'm a little apprehensive, as she has been pushing for Pumpkin to get a G-tube. The thought of this freaks Pumpkin out, and is her #1 fear, according to the psychologist. The psychologist even went as far as to say as pushing Pumpkin to get the G-tube would be traumatic to her and probably life-altering in a very bad way. The last time I spoke with the GI, she pretty much said that any weight loss was too much at this point and unacceptable, at that point she weighed 95 lbs, but since then she had a tonsillectomy, lost 8 lbs and has gained 2 back in the past month. We've tried two different appetite enhancers which both set off her neuro system negatively after once dose (seizure and pre-seizure symptoms). She has given up on Ensure and Peptamen Junior - so sick of them! NG tube was a traumatic experience too. Right now she is eating food and drinking Carnation Instant Breakfast for supplementation. She has started a swimming program and doing other PE activities about 4 hours a week. I'm thrilled to see her building her exercise tolerance to be able to do this, but it isn't helping her gain weight.
I'm to the point of pretty much telling the GI that a G-tube is off the table, and if she wants to help Pumpkin, she'll have to find another way. I know her heart is right, but I can't use fear as a motivator for Pumpkin - she doesn't work that way - and unless Pumpkin takes a terrible turn for the worst and we don't have any other options, we're not even going to talk about it any longer.
Has anyone else faced this issue with their GI and told them that a G-tube wasn't an option when they were feeling pressured to go that direction? If so, how did it go?
Lastly, I'm thinking strongly about enrolling Pumpkin in a charter school program we have in our public school system where she will be working with other kids, but working at her own pace on the things she needs to meet school standards. I think it will be a good situation for her - I just hope the anxiety of doing something different won't set her too far back health-wise...
I guess that is my update. Thanks for reading, if you made it this far!
Wednesday, January 1, 2014
New Year Status
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| Stained glass pumpkin by Pumpkin |
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| With the lights off |
Pumpkin has finally started eating again and having less pain after her tonsillectomy that was done on the 18th. She couldn't get enough popsicles last evening while watching a movie together, but only ate half of her supper prior to the movie. She said it didn't taste good. This is a common complaint - I think it is part of the picture, but not sure what to make of it. After eating she later had reflux symptoms and needed tums, which has happened a couple days in a row... :(
I am glad for the increased appetite, but was hoping for much more after 2 weeks of rest... she's down to 89 lbs :( but has only lost 3 since the tonsillectomy as she was 92.6 on the day of the tonsillectomy. She still has a little throat pain.
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| Before |
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| After (hers are the two on bottom!) |
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| Ice fishing with dad before the tonsillectomy |
Tuesday, December 24, 2013
Tonsillectomy
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| Pumpkin as Ginny Weasley, Dad as Lucius Malfoy, and Little Brother as Harry Potter |
Pumpkin has had a rough couple of weeks. Two weeks ago she was so stressed out about her upcoming tonsillectomy that she couldn't eat, then she had the tonsillectomy, and now she is still having pain trying to recover. She wants to eat but is so afraid of her throat hurting that she doesn't eat much. I keep thinking to myself that she will be fine once she gets over this. She says food doesn't taste like it should :( also. She lost 2 lbs before even having the surgery, and we aren't pushing the formulas right now because she is so sick of them. We are letter her recover in the same manner as her 2 siblings, who also just had their tonsils out. In some ways she is doing better than her brother who had his out on the same day, so I feel reassured about that. After 2-3 weeks, we'll start looking at the eating issues again, hopefully she'll bounce back like the other two are expected to...
On January 10, she will be seeing a psychologist to help deal with her anxiety and see if we can make some headway through the whole psychological part of eating. I just wonder whether it is physical or psychological, but even if it is all physical, she has a lot of anxiety about living with chronic disease... It can't hurt. Right?
P.S. CheapBohemian and Sibol, I'd be happy to correspond with you, but I don't know how to go about that.
Recent stat summary:
*Currently age 14, Crohn's diagnosis 1-2013 - age 13.
*EEN finished 4-5-13, gained 20 lbs and did great until she got strep throat and a virus in 7-2013 and lost 7.5 lbs. Back to 90 lbs 10-8-13, up to 94.8 lbs 11-2013!
*Prednisone 40 mg daily starting 9-14-13 done 10-11-13
*6mp 50 mg daily
*Vitamin D3 1000 IU daily
*Zinc gluconate 50 mg 4 days a week
*Supplemental EN (1500 cal/day) - was drinking about 1750 calories a day until about 12-15-2013, this has come to a halt while she recovers from her tonsillectomy... She's currently getting a break from it as she is burnt out on it... weight was 92.4 the day of her tonsillectomy and we're a week out now. Hopefully she'll heal quickly and start eating normally again...
*Currently age 14, Crohn's diagnosis 1-2013 - age 13.
*EEN finished 4-5-13, gained 20 lbs and did great until she got strep throat and a virus in 7-2013 and lost 7.5 lbs. Back to 90 lbs 10-8-13, up to 94.8 lbs 11-2013!
*Prednisone 40 mg daily starting 9-14-13 done 10-11-13
*6mp 50 mg daily
*Vitamin D3 1000 IU daily
*Zinc gluconate 50 mg 4 days a week
*Supplemental EN (1500 cal/day) - was drinking about 1750 calories a day until about 12-15-2013, this has come to a halt while she recovers from her tonsillectomy... She's currently getting a break from it as she is burnt out on it... weight was 92.4 the day of her tonsillectomy and we're a week out now. Hopefully she'll heal quickly and start eating normally again...
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