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New Here and Worried!

GwensMom

GwensMom

My daughter Gwendolyn (13), is undiagnosed and experiencing her first major flare. She has had diarrhea now for just over 3 weeks (2 weeks with blood) straight and is scheduled for an upper endoscopy and colonoscopy this Thursday. I have so many questions, but the major one that is on my mind at the moment is about the prep for her procedures which we have to start tomorrow. We will be starting the Miralax & Gatorade prep at 12pm and I am concerned about any side effects the prep will cause. Will the prep harm her bowels and cause more bleeding?

She is already going to the bathroom about 8-11 times a day and is hardly eating anything. I am so worried that taking the prep is only going to cause her to go more frequently and that it is going to cause more extensive bleeding. Can the prep be stopped once the stools turn clear? I am so nervous for her and scared that this prep is going to cause more harm then good. I did ask the doctor about it. but he didn't seem concerned at all. Am I just being a scared mom or are my concerns warranted?
 
C

crohnsinct

Well-known member
My daughter was inpatient and just out of ICU when we did her prep. She also had diarrhea with severe bleeding for two weeks prior to her prep. She was fine. Miralax is pretty gentle on the system. It just pulls water into the bowels to get things moving. I know it sounds silly given a lot of the kiddos seem to be clearing themselves out but it really is necessary so the GI can get a good clean view of what is going on. It is important to get the imaging done so you can get a diagnosis and get on with treatment.

Of course you are being a scared mom. We have all btdt.

Our instructions are to stop the Miralax once the stools turn clear but keep up the fluids!

Good luck with the scopes! I hope they provide clear answers and a good plan!
 
Clash

Clash

Agree. The prep isn't fun but not harmful either. It is important to keep the fluids up even after you are done with the prep up until the time the doc as list as NPO or nothing by mouth.

I hope all goes well.
 
Farmwife

Farmwife

Hi and welcome.
I'm sorry your dd has to go thru all this but scopes in the long run is the easiest part
if your in a bad flare... at least it was for my child.
I hope you get answers and a plan in place soon.
I know the worry and pain of seeing your girl in pain.:frown:

Hugs:rosette2:
 
Crohns08

Crohns08

For me it depends on the prep. I was always prescribed golightly and it was terrible. I couldn't keep it down and what I could it was painful having all of that fluid surging through my bowels. It wasn't until I read some members' posts on here that I secretly tried their reccomendations. I believe it was magnesium citrate and dulcolax that worked for me and I only took it until stools turned to clear liquid and never had an issue. Miralax is also another that is gentler on the system as well.
 
GwensMom

GwensMom

Thank you so much everybody! Gwendolyn has started her prep. We are at the waiting stage now as she has only had one glass full so far. All of your kind words and reassurances have calmed my nerves considerably. It always helps to hear from others that have been through our unknown. This forum has a wealth of information and it has been so helpful to just read and prepare Gwendolyn and myself for what may be to come.
 
my little penguin

my little penguin

Moderator
Staff member
Same as other parents
DS has had 5-6 scopes so far
Miralax plus gatorade is an easy prep
She will have cramping that may be worse
And you may see blood
But a good view is extremely important
DS did his last prep inpatient but all the other we're done at home .
No issues other than not being able to leave the bathroom is very common .
Calmoseptine cream used as a barrier during each bathroom trip will save her skin from burning .

Good luck
It gets easier after a dx
 
Maya142

Maya142

Moderator
Staff member
My daughter also had no issues with the Miralax prep (besides not liking gatorade!). We were told that you can use vaseline as a barrier cream too, and that actually helped quite a bit. Also, flushable wipes.
It took a while for the diarrhea to start but once it did, it really did!
Compared to the prep, the scopes were a breeze. They didn't even put an IV in her until she was asleep, which she really liked (not sure every hospital does this though).
Good luck! Hope scopes go well.
 
Worried mama

Worried mama

My son did the miralax and Gatorade prep also and it went smoothly. He didn't go to the bathroom at all for prob 5 hours, then all of a sudden! He just sat on the toilet playing his iPad for about an hour, and then he was done pretty much. It went better than I had expected. He is also 13 and was just diagnosed in oct.
 
A

awmom

My son also did the Miralax prep and it went without a hitch. He did not like the gatorade, so he took most of it with plain water. It did take a while for it to start working (the first time I actually gave him a bottle of magnesium citrate in between because we were worried it wasn't working!!), but it goes very quickly once it starts. Using vaseline in between and dabbing gently was also incredibly helpful as he was already sore to begin with. I hope you get results soon and she gets to feeling better, and please know that we so understand the anxiety and worry that these procedures and health issues bring. Keep us posted on the results.
 
GwensMom

GwensMom

Prep is not going well. I'm not sure what to do exactly. Gwendolyn has only drank about 2/3 of the liquid required. She has been going to the bathroom, but it doesn't seem to be getting much clearer or any different then what she has been going. It is yellowish in color with some light tan tint. She doesn't want to finish the gatorade mixture at all. We were also told to give her two dulcolax tabs after finishing the miralax and gatorade. If I can not get her to drink the rest of the gatorade should I just continue with the dulcolax? I am trying to encourage her to finish the gatorade, but it is getting later and later. I would like it if she could get some rest before we make the 2 hour drive tomorrow. I just feel horrible for her and hate that she is having to go through this. If I could trade places with her, I would.

Maya142 - Gwendolyn would loooove it if they didn't put the IV in until she was out. She is pretty afraid of needles and being poked.
 
Cupkatemom

Cupkatemom

My dd was 10 last year when we did the scopes and the prep was awful. We didn't fully get the magnesium citrate down until close to midnight, but we did it and she was clear for the scopes. My dd will only do the miralax with water. Do you have to use Gatorade? Can you mix it with a slushy? We mixed the magnesium citrate with a Sonic Slush and spooned it to her. BTW...I think I drank almost a whole bottle of wine that night trying to get her to drink. Hugs!
 
my little penguin

my little penguin

Moderator
Staff member
Typically you have to finish the gatorade miralax prep within 4 hours
I would call the on call GI for specific instructions
If you can get the ducolax in that might help
But not a doc so please call your GI asap
 
Maya142

Maya142

Moderator
Staff member
We switched back and forth between Gatorade and water, since she hated the gatorade so much. You could try a different flavor, or try pedialyte or a cup of juice or something else she likes to drink. The use of gatorade/pedialyte is so she doesn't get dehydrated.

Unfortunately, M was going to the bathroom well into the night - it may be the same for your daughter. We covered her bed with a towel in case she had an accident but she was fine when she finally got to bed.

Definitely call the doctor on call, they might want you do try something else if the Miralax isn't working.

Good luck!!
 
pdx

pdx

I agree that you should check in with your doctor if you can. But I also wanted to let you know that your daughter might be done already, if what is coming out is basically liquid and just has a yellowish/brownish tint. My daughter, like yours, hadn't been eating much, and there just wasn't much to come out during prep. She also could only get about 2/3 the miralax mixture down, but that was enough to completely clear her out. I did give her the dulcolax at the end.

My daughter is terrified of needles and IV's, but we've been able to get through all her procedures with a combination of Atavan and EMLA cream. If she gets a generous amount of EMLA put on an hour before the IV, she doesn't feel it at all. She didn't trust the EMLA would work for her first few IV's, so we also used a small dose of Atavan to help lower her extreme anxiety. Now that she trusts the EMLA, she's able to do blood draws and IV's without the Atavan.

Our regular pediatrician gave us a prescription for EMLA so that we can put it on ourselves at home, to minimize waiting time at the hospital. But you can ask for it when you get to the hospital too. Try to get it put on right away, so that it can be going to work while you're waiting around. It really does need to be on for at least an hour to be effective.

So sorry that you and your daughter have to go through this.
 
C

crohnsinct

Well-known member
How is it going now?

When O was impatient and we were prepping it was just like you are describing. She didn't want to drink the Gatorade and it was veeeeeery slow going. We were at it up to midnight. The best we got was see through green. The doc said that was fine.

With T we went through two large bottles and a few doses of the smaller bottle and finally just quit at 1 a.m. when she started throwing up. She didn't look anywhere near clear and I thought the scopes would be called off but the doc said he saw everything perfectly fine. Same with O for her last prep.

Both of my girls did much better drinking the Miralax in water, ginger ale or sprite than Gatorade. Maybe try water for a dose or two. We were also told to take a little break and let things work and then if still not clear t go back at it.

I agree to calling the on call GI (they expect prep questions) and take it from there but I think you will probably be fine.

:ghug:
 
CarolinAlaska

CarolinAlaska

Holding It Together
During my daughters first prep, she stopped wanting to drink the Gatorade MiraLAX mixture. I then started offering her ginger ale, what she willingly took. What she didn't know was that it was half mixed with the Gatorade mixture! Even so, she only drank half of the MiraLAX mixture and she was cleaned out well. Her poops were green but that was her Gatorade color.
 
A

awmom

we were also worried that what was coming out wasn't completely clear. It never has been for any of his 4 scopes. He never could tolerate the gatorade but was fine with water. I think yellow, tannish was about as good as we got and it was fine. Our adult GI said sometimes they irrigate the bowel a bit if things aren't too clear. We were up past midnight also, and he was tired in the am, but hopefully your little girl will get a lot of rest tomorrow. We also had a 2 hour trip and I was afraid he would need to go during the drive so we were prepared, but he was fine. I hope YOU get a good nite's rest and that tomorrow goes smoothly for both of you.
 
GwensMom

GwensMom

I don't have a number for the GI on call and I'm not even sure where to call to find out. We have given up on the Miralax and gatorade. She was drinking yellow gatorade and the BM's have gotten lighter in color from first to last. Her last one was yellowish clear with some yellowy sediment like stuff in it. I did get her to drink one more glass after her last BM and got her to take the dulcolax. That was a chore in itself too. She has a hard time swallowing pills. She got the first down with no problem, but then had a hard time getting the second to go down. She went through 3 pills trying to get a second one down. The coating kept coming off and finally she gagged it down and almost vomited it back up. I just hope it is clear enough. I would hate for her to have gone through all this and not get the right results. You all have been life savers in keeping me sane through this.
 
GwensMom

GwensMom

my little penguin said:
Typically you have to finish the gatorade miralax prep within 4 hours
I would call the on call GI for specific instructions
If you can get the ducolax in that might help
But not a doc so please call your GI asap
Click to expand...
Our prep sheet had us starting at noon and said to take 8oz every 30 to 60 minutes with a total of 64ozs total so it would have taken 6-8 hours. We got delayed when she started going to the bathroom. I figured since she was having BM's we would take it on the slower side and see how things went. I kept pushing the Gatorade after each BM until the 5 time she went. She is in the bathroom again now so I'm hoping that she has enough in her system to keep her cleaning out.
 
Maya142

Maya142

Moderator
Staff member
Really hope she can gets cleaned out so you don't have to repeat the prep! Fingers crossed! In my daughter's case "clear" meant yellowish liquid and the GI on call said that was fine.

Many hospitals have Child life specialists who can help your daughter with things like dealing with IVs and swallowing pills. There are also a number of parents on here who had to teach their kids how to swallow pills, I'm sure they will chime in soon.
 
GwensMom

GwensMom

She just finished in the bathroom again and there is still blood present. I think that is what is causing the tan like coloration. It is mostly yellow though so fingers crossed it's good enough!
 
pdx

pdx

It sounds like you're good. Hope you both get some good sleep tonight, and that tomorrow goes well.
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
yes the prep is fine with watery light coloration and very few sediments. She might even experience some relief of symptoms until the colonoscopy. For me, a prep relaxes my colon afterwards and eases my symptoms. good luck.
 
GwensMom

GwensMom

The procedures themselves went well. Gwendolyn was very well cleaned out and they were able to get good images. The upper endoscopy was clean, but the colonoscopy showed a significant amount of inflammation. She was admitted. They did a TB test last night and she had a CT scan this morning. The plan is to start iv steroids tomorrow. They also started her on iron, a multivitamin, and vitamin D. The nurses are awsome and taught us a new trick for taking pills with applesauce! Her hemoglobin (I think) was an 8 and they plan on retesting her tomorrow to see if it has dropped anymore since it went from 11 to 8 in just a week. I know they said if it drops to 7 she will have to have a transfusion. She ate really well and drank some boosts today too so we are hoping that helps. Also did a steroid enema tonight and that does seem to have helped a little. I do believe they are leaning more toward a diagnosis of Ulcerative Colitis.
Gwendolyn has been a trooper. She has been in good spirits and has been taking everything in stride. The iron, fluids, and vitamins have really perked her up. I hope to keep seeing improvements with each passing day. Thank you again to everybody who helped ease my mind. I am sure their will be many more questions in the days to come as they start discussing medication options.
 
Catherine

Catherine

Moderator
Sorry about the dx. Good to here they are moving forward with a treatment plan.

Our experience also was that steriod work very quickly.
 
my little penguin

my little penguin

Moderator
Staff member
So sorry that you have to stay inpateint
But I am glad that she has a dx so she can get the right meds and slowly start to heal.
It may take a bit longer than you would like but she will get there
Iv steriods tend to work quickly
Good luck
 
Maya142

Maya142

Moderator
Staff member
Sorry about the diagnosis but I'm so glad you have answers and that they're treating her. My daughter perked up within days of IV steroids - hopefully they'll work as fast for your girl.
Hang in there :ghug:
 
pdx

pdx

Glad to hear the your doctors are moving forward to get your daughter some relief. Hope that she's feeling much better soon.
 
GwensMom

GwensMom

Gwendolyn has had 3 doses of steroids now and seems to be responding very well to them. They have also started her on 2 different antibiotics because her blood test came back positive for h-pylori. CT scans show no fistula or any other concerns at the moment. We are still waiting for results for her iron levels and she is still on iv fluids because she isn't drinking enough to keep fully hydrated. On the up side she has been able to eat and we had our first full night with no trips to the bathroom! Getting her to drink 3 boosts a day has been a challenge and the most she has managed so far is about 1 and a half in one day. Well we switched up the flavors and found she really likes the vanilla flavor better. She drank one full boost after breakfast this morning. All in all she is in pretty good shape and improving daily.
 
C

crohnsinct

Well-known member
Great news! We all have a love hate relationship with those steroids. Hate to use them but love it when they work like that.

So sorry she has an infection on top of everything else.

If she does need the transfusion, that is just another thing that once you get it, you will not believe the improvement in how she looks and feels.

Another trick to the shakes is different brands. O liked Vanilla Boost but Chocolate Ensure. T is the direct opposite.

Crossing our fingers that things just keep improving!
 
my little penguin

my little penguin

Moderator
Staff member
Sounds like she is moving I the right direction
I know with DS it was a matter of finding the right type and flavor
Boost tasted good but wasn't processed down enough for him
He need peptamen jr which tastes foul but really worked for him .
 
GwensMom

GwensMom

Gwendolyn was discharged on Wednesday and things were going smoothly... for all of five seconds! We got her home and right away we had problems getting some of her medication because the insurance company thinks they know better then our GI as to the proper dosage she should be taking of certain pills. I'm still fighting with them about it.

Wednesday night went really well. She slept, didn't wake to use the bathroom, and seemed to be feeling and doing much better. Thursday seemed about the same until late last night. My youngest son started vomiting. What a nightmare. About an hour later Gwendolyn started as well. I feel horrible for the both of them. Thankfully we had a follow up scheduled with our pediatrician for today so he was able to see her and give her something to help stop the vomiting so that she can take her medication and keep it down. My poor girl looks horrible. She barely slept and is pale as a ghost again. It feels like she can not catch a break and every time we think there is a dim light at the end of the tunnel it quickly closes back up on her. I just want her to get some relief.

Has anybody else had to deal with a stomach virus on top of a flare up? If so is there any other tips I can try to make her comfortable?
 
C

crohnsinct

Well-known member
Oh no! So sorry about the virus. It is going around here also. No experience with a virus on top of a flare but hopefully the virus moves through fast and she get back to the business of healing. Just keep those fluids up! Gatorade, pedialyte etc. :ghug:

What maintenance med did you all settle on?
 
GwensMom

GwensMom

crohnsinct said:
What maintenance med did you all settle on?
Click to expand...

We have not totally settled on one yet. She goes back to the GI on Monday and also has a Bone Density test set up for that day as well. We will be figuring out her maintenance meds then. I think they wanted to wait and see what the biopsy results show first before making a final decision. I'm hoping that whatever this is that it does move out quick so she is at least feeling better for the ride out there.
 
C

crohnsinct

Well-known member
I'm guessing with the TB test they might be thinking biologic.

Don't be surprised if her bone density comes up low. Lots of IBD kids have low bone density but once the IBD is treated you can start to get that moving in the right direction as well.

Good Luck with the virus and appointment.
 
Farmwife

Farmwife

Ya we've done the virus on top of a flare. No fun! We were told to help her hydrated and call if anything "extra" is going on. Which is lovely to say when your child already has all the "extras". Grace did take longer than her brother to recover.

Hugs, I hope they're all better soon and I pray you don't get it.
 
Tesscorm

Tesscorm

Moderator
Staff member
Ugh, sorry that she's dealing with a virus as well. :( I hope she can clear that quickly!

Good luck with the apptmt. :ghug:
 
GwensMom

GwensMom

The Zofran the doctor prescribed seems to be doing the trick. She missed a couple doses of her antibiotics yesterday.. but I did get her to take her steroids. Back on track this morning and all her pills were taken on time. She says she feels the best she has felt in weeks. No stomach pains or cramps even before a BM! She does have a little bit of diarrhea, but I'm guessing that is the antibiotics and the virus moving through her. Still a little bit of blood as well, but not nearly as much as she use to be getting.

Her little brother on the other hand has me stumped. He vomited in the early morning Friday. Seemed ok and much like him self for most of Friday. He even ate a slice of pizza (my husband gave it to him) and kept it down. He fell asleep kind of early and slept all night without a problem. He woke up this morning, took a drink and then threw up again. He fell asleep for a little bit more then woke up and got sick a second time. He seems normal again now. No fever so far. He is sipping on water and just hanging out watching tv. I'm starting to think he may be constipated. All this sickness is driving me nuts though. I am an emetophobic....I can handle the poop, but gosh the vomiting just kills me and gets me all nervous. It's horrible and I just want it to stop!!
 
GwensMom

GwensMom

Our appointment today went well. Final diagnosis is Ulcerative Colitis. They are keeping her on the prednisone for now as she is still seeing a little bit of blood in her stool. They want her to start Pentasa in a few days as well. I kind of have mixed emotions about this. From what I have been reading the results with this drug are not that great. The dosage they are starting her on seems like a huge amount as well. She has to take 3 500mg capsules twice a day. I just hope it does not cause more set backs...we've had enough of those!!
 
my little penguin

my little penguin

Moderator
Staff member
Pentasa does seem to do a lot better when used as a monotherapy in UC.
It has next to no ability in control things in crohns ( since crohns effects multiple layers nit just the top)
Good luck
 
C

crohnsinct

Well-known member
ditto! O's friend has UC and she does very well with Pentasa. She is also on Remicade with the Pentasa. Sounds like a good plan or at least a common plan to me. Hold on there mama! The first 6 months of figuring things out are the roughest. You will get there!
 
GwensMom

GwensMom

Thanks! That does make me feel a little better. Perhaps what I was reading was based more on Crohns results. I just am hoping like crazy that it does the trick for her. They did mention something about Remicade and 6mp and that either one of those could also be in our future.
 
Maya142

Maya142

Moderator
Staff member
My daughter also has a friend with UC who is doing well on just Pentasa. My daughter was put on Pentasa (with Remicade and Methotrexate) when she was first diagnosed with Crohn's. We eventually discontinued it because it didn't seem to be doing anything. But she had no side effects and if I remember correctly, she was on a similar dose, though she only took it twice a day. The capsules were quite large but my daughter got good at swallowing them pretty quickly. They can be opened into applesauce - I think (please check with your pharmacist!).

Hope your daughter starts feeling better soon!
 
Mehita

Mehita

My son was taking four capsules twice a day at age 12, so three a day is probably a good dose. Has she started yet? They can seem huge, but applesauce, pudding, Ensure... all can make them easier to go down.

You may see the capsule or the little beads from inside the capsule in her stool. I was always told that it was fine.

Glad you got a diagnosis so you can move forward and get her healthy again.
 
my little penguin

my little penguin

Moderator
Staff member
DS started pentasa at age 7.
He didn't know how to swallow any pills at all.
It took two weeks but he learned ( lots of tears )
There is the oroflo cup as well.
CCFA has a pill sheet to help.

We opened the and I dumped the beads on his tongue
He drank water and swallowed
Or applesauce
Worked our way up from tic tacs/ rice
To m&ms and then jelly beans


http://www.ccfa.org/assets/pdfs/PillSwallowing.pdf
 
GwensMom

GwensMom

Gwendolyn started Pentasa today and has had 2 doses. We have been opening the capsules and sprinkling the beads into pudding because she is so intimidated by their size. The research rep said that it is fine to mix it into things as long as she doesn't chew the beads. So far so good and she has not experienced any immediate side effects.

I forgot to mention that Gwendolyn decided that she wanted to take part in a research study on how well Pentasa works for UC. The rep meets with us at the same time as Gwendolyn's GI appointments. We have to fill out survey's online and supply a blood test and stool sample at certain intervals after she has been on the medication. The rep herself also has IBD (Not sure if it is Crohn's or UC) and she has spent quite a bit of time talking with Gwendolyn and really getting to know her. I think it helps Gwendolyn to have somebody she can talk to who knows what she is going through.

All in all Gwendolyn is doing well. We actually got out of the house a little bit and went o color Easter Eggs at my Moms tonight. I'm sure it is mostly due to the pred. and I'm a bit afraid of what is going to happen when we start weaning her off of it. We are hoping that she can get back to school, but again I'm afraid the Pred. is giving us a false sense of security and that she will have a set back once she starts to wean off of it. I think I may keep her home until we at least get a meeting with her teachers. She has already missed so much school and I hate the thought of her falling even further behind. When did everybody else send their children back to school?
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
I'd remain positive and most likely, pentasa will help her as she tapers pred down. Its great she enrolled in this research. She 'll learn plenty of stuff I am sure. On top of it, this will offer extra monitoring of her condition. returning to school and back to social activity if she can, can only help her I believe.
 
Catherine

Catherine

Moderator
My daughter started back at school approximately five days after starting pred. I tried to keep her home longer. She would have gone back early.

She was Dx on first day of year 11 at 16 years.

In some ways it was a good thing, she looked terrible. It was easy for the teachers to see how sick she was. They had all adviced of the dx by her level co-ordinated.
 
C

crohnsinct

Well-known member
O was released from the hospital on Sunday and went to school Monday. At that point she had only had one Remicade infusion and was on prednisone.

As to the taper of steroids...we had a very difficult time. Every time we stepped down a bit symptoms returned so we had to go back up. It was very much a two steps forward one step back kind of thing. But the difference is, the symptoms were just a bit and this time we knew what they meant and what to do so they didn't hang around long before we took care of them.

The taper is an art more than a science and does require patience and tweaking but you will get there. Eventually my daughter was declared steroid dependent and we had to add another treatment to the Remicade but in the end it all worked out fine.

Patience and flexibility are the key!
 
GwensMom

GwensMom

Thanks for the responses! Prior to being admitted into the hospital she had already missed almost a month of school. She is doing well, but seems to have very little energy. She still looks pale as can be even though she is taking 3 iron tablets a day. She is not seeing anymore blood in her stool so I'm not sure exactly what is causing it. There were only 2 days left of school after she was discharged from the hospital before Spring break so she has had some days to just laze around. I'm just hoping she can catch back up and get back into the swing of things. Her best friend was kind enough to collect all of her homework for the time she has missed, but she has only just now felt up to doing any of it.
 
pdx

pdx

My daughter has been out of school since December of last year, but our situation is a little different since E didn't start steroids right away. Our doctor initially wanted to try to avoid using steroids, and my daughter didn't react quickly to Remicade, so she was very weak for several months.

Since she was at school for the first 3 months of the semester, she was able to make up enough work at home to get credit for all her first semester classes. But when the second semester started in February, we decided to pull her out of school and homeschool. It ended up being a good decision. It's reduced her stress levels, and it made getting the NG-tube easier to deal with, since she didn't have to go to school with it in. And it's nice to have the flexibility to work around medical appointments and days when she's not feeling well.

Now that she's on budesonide, MTX and the NG-tube, she's getting stronger, but I know going back to school midway through the semester would be stressful for her, so we'll finish out the school year at home. We're all hoping she can go back to school in September for 8th grade.
 
GwensMom

GwensMom

I'm hoping that once school starts back up I can get a meeting set up with her teachers and figure out a good game plan for her. I am not sure what the policy is on homeschooling here and if it would even be possible to start her now since it is so close to the end of the year. I know at one point our teacher mentioned perhaps getting her a tutor to come and help her catch up with the back work she has accumulated. I just don't like the idea of sending her back to school without the teachers being aware of what is going on and what she can handle.
 
C

crohnsinct

Well-known member
You can definitely get that meeting set up. It's the law. They have t meet with you. You will be requesting a 504 plan. The CCFA has an excellent resource to use as a template and then you can customize it with her team as needed.

Just a word of advice, she may not need everything listed now but if you can, get it included because as many here will tell you things can change on a dime and it will just be easier to have it in then than reconvening the group and having it added. Our district is extremely accommodating and threw everything in both of my daughters' plans.

If you have the teacher's emails and the guidance counselor and nurse, I would email them now and attaché the ccfa brochure "to school personnel". Sometimes teacher's will check their emails on vacation or the weekend and you will be that much more ahead. Even if they don't at least they will have it first thing.

http://www.ccfa.org/resources/guide-for-teachers.html

http://www.ccfa.org/resources/template-section-504-plan.html
 
my little penguin

my little penguin

Moderator
Staff member
Also be aware even if they are up to date on things a 504 offical meeting takes weeks to months to schedule .
They can put things in place at school before the offical meeting though
 
GwensMom

GwensMom

What great articles and information. I knew we had to get a 504 in place, but I had no idea where to even begin. I have been in contact with the school nurse and informing her of what has been going on with Gwendolyn from the start of everything so she already has a good idea of what the diagnosis was going to be. She did mention something about "getting the ball rolling", but I'm no sure exactly what she meant by it. I'll probably stop in and talk with her again on Tuesday when school resumes and officially call and try to get some meetings set up.
 
my little penguin

my little penguin

Moderator
Staff member
504 requests have to be made in writing
And sent to the 504 coordinator for your district
Sometimes that's the principal or nurse
Verbal requests do not count
 
DustyKat

DustyKat

Super Moderator
Hi GwensMom. :ghug:

I haven’t been around for a few weeks so have missed seeing you until now. I am so very sorry to read of all your lass and yourself having been going through. :( And whilst I am glad to see you finally have answers I am sorry to hear of the diagnosis. I hope now that treatment has started Gwendolyn soon starts feeling on top things, bless her. :heart:

The Pentasa: As mlp has said, the 5ASA’s have a much more successful path with UC full stop as their effect is topical and the inflammation of UC affects the top layer of the bowel only. And yes, you can open the capsules and mix with things like applesauce, pudding so long as the beads are not chewed as you know. :)

How brilliant is it that your daughter is being involved in a research study! :thumleft:

Sending much luck and warm wishes that she is also able to soon get back on track with school. Loads of folk here with knowledge of the US school system as you have already seen! :)

In my thoughts.

Dusty. xxx
 
D

DanceMom

I would send an email to her teacher and/or guidance counselor. Explain her current medical situation and request a 504 meeting be set up. MLP is correct in that it often takes some time before the meeting will actually be held. The end of the school year is very busy in IEP and 504 land.....
 
kimmidwife

kimmidwife

Hi Gwen's mom,
Welcome as the others have said. You have already gotten a lot of good advice here so I don't have much to add. Must wanted to say and welcome you to the forum. Keep us posted on how your daughter is doing.
 
Maya142

Maya142

Moderator
Staff member
We emailed/talked to my daughter's guidance counselor. She was in middle school too when she got a 504. The school was very accommodating and met with us within a week or two.

Hang in there! Hope she's feeling better.
 
C

crohnsinct

Well-known member
We didn't have to wait for a 504 meeting. Especially since I sent all that stuff. The school nurse and guidance counselor pretty much wrote up the whole plan and sent it to me for review prior to the meeting so the meeting was more just a formality.

One piece of advice...our school has a no drinking policy. O.K. wise guys...I meant ANYTHING! and yes! They still let me walk the halls!

So to carry a water bottle you need a doctor's note. I am sure staying hydrated is a major issue for your dd and if the meeting is going to take a while get a doctor note that she must carry water. You don't need a 504 for that and the note will suffice. Dehydration wrecks my daughter.
 
GwensMom

GwensMom

crohnsinct said:
One piece of advice...our school has a no drinking policy. O.K. wise guys...I meant ANYTHING! and yes! They still let me walk the halls!

So to carry a water bottle you need a doctor's note. I am sure staying hydrated is a major issue for your dd and if the meeting is going to take a while get a doctor note that she must carry water. You don't need a 504 for that and the note will suffice. Dehydration wrecks my daughter.
Click to expand...

Our school is actually really good about allowing kids to have water bottles in class as long as they have a certain kind of closure on them. No screw on tops or wide mouthed bottles are allowed.. it has to be one of those ones that kind of pop up and down. I know in the elementary grades they use to actually put them on the school supply lists and the kids keep them at their desks. :thumleft: I will be sure to ask anyway though just to be sure the policy hasn't changed.

Dehydration has been a major issue for us. I actually liked having her in the hospital on the iv because that was the only time I felt like she was getting enough fluid. I'm still having trouble getting her to drink the 3 boosts a day and we have switched to the chocolate Ensure now. She seems to like those better, but she still has yet to fully drink the three she is suppose to. I have to take her tomorrow to get more blood work done. It will be interesting to see just where her levels are.

The best news though is that Gwendolyn finally finished her antibiotics. We actually did a happy dance after she took her last dose. They were just awful. Hopefully the blood work will show no further signs of infection there.

Thanks again to everybody for such good advice and all the information. I will be going into school tomorrow and talk with the nurse and the guidance counselor.
 
Maya142

Maya142

Moderator
Staff member
Have you tried switching it up? You can try ensure, boost, pediasure - there are usually at least several flavors. Carnation Instant Breakfast is another one that tastes relatively good.

Keeping whatever she is drinking cold and using a straw could help her with the taste. Also keeping a water bottle or cup of it with her and sipping it over a longer period of time might work better than trying to drink it all at once.

There are also easier to tolerate formulas like Peptamen Jr and Neocate but honestly those taste a lot worse!
Good luck!
 
GwensMom

GwensMom

Things here have been moving sort of slow. Gwendolyn's pediatrician has been lagging in sending paper work to the school. Despite that though she did return to school today! After talking extensively with the school nurse and the student service counselor we decided that she would return for only partial days until she feels up to going for a full day. This works out well since her major classes are all in the morning and most of her afternoon is filled with study halls.

I also passed on the two links that crohnsinct had posted to the counselor and she in turn took parts of it and wrote a very nice email to all of Gwendolyn's teachers to further explain what has been going on. We are planning on using it to help set up the 504 plan as well. All of Gwen's teacher's have responded well and have all been very understanding.

We also had another set back this morning. Gwendolyn saw some bloody mucus in her BM this morning. I'm a little bummed out by this as she really hasn't had any for almost 2 weeks now. We head back out to see her GI on Monday. I was really hoping they would start weaning her off the pred, but now that she had the blood I'm scared they are not going to.
 
GwensMom

GwensMom

Just an update on my girl. We were back to the GI this past Monday and much as I expected they are extending her time on Pred because she still has blood present in her stool. We are going to test again in 2 weeks and see if it is still there and after that if it has not gone away we are going to have to decide on our next course of treatment. They are recommending 6mp or Remicade. I'm torn between them and not sure which will be better for her. I've been doing a ton of research and still can not decide.

School is not going well either. She went only one day and has not been back since. She is so fatigued and I think she is stressed out by being so far behind. We have set up tutoring for her after school. That is set to start Monday.

On top of all this my husband fell asleep behind the wheel and crashed his work truck into a tree. Thankfully he is only banged up and bruised. But while doing a CT scan of his abdomen for internal bleeding they found a mass on his kidney that is unrelated to the crash. We will be going to a near by cancer treatment facility for a biopsy sometime soon.

I guess when it rains it pours! If anybody has any input on the medications for Gwendolyn I'd welcome it. I have been reading the other threads on these medications and gathering information that way, but if you have any experience with the both of them I'd love to hear which one worked best for you or your child.
 
pdx

pdx

So sorry to hear all this, Gwensmom--you all have enough to worry about with your daughter. I hope that your husband's mass turns out to be benign.

What grade is your daughter in? I'm asking because mine is a 7th grader, and that made our decision to homeschool this semester easier. In our school district, 7th grade classes and grades don't matter much, whereas several 8th grade courses (math and Spanish) go onto the kids' high school transcripts.

Our homeschooling is very casual. We work from 10am - noon every day, and we're mostly just making sure that she stays caught up with math and Spanish, so that she can continue on the same track when she goes back next fall for 8th grade. Her teachers have been wonderful--they have given me their course guides and let us keep all her books, so that we can follow along. Her math teacher is even giving me the exams for each unit, and then grading them after E takes them at home. We're doing a little English, science, and social studies too, but I'm not worrying so much about those.

Making the decision to pull my daughter out of school for the semester has really reduced her stress level. I know it's not an option for everyone (for lots of different reasons), but it might be something to think about, just for the last few months of this school year.
 
Maya142

Maya142

Moderator
Staff member
We've done both. Remicade by itself didn't work for my daughter, but with methotrexate it worked like magic. With Imuran (very similar to 6MP) it worked great for her IBD, not so great for her arthritis. M has never tried Imuran/6MP by themselves - we went straight to biologics because of the severity of her arthritis.

6MP typically takes longer to work but has the advantage of being just a pill. Remicade, as I'm sure you know, is infusions which can be anywhere from every 4 weeks to every 8 weeks. My daughter actually really liked her infusions - she got to watch TV, nap and have a day off from school! The nurses also really spoil the kids.

M had NO side effects with Remicade besides a little tiredness the day after the infusion. With Imuran, she had bad nausea but it went away after a while. No infections or anything scary you read about - and my daughters have both been on biologics + immunomodulators for years.

Sorry to hear about your husband - hope the biopsy is clear!
Really hope your daughter feels better soon!
 
GwensMom

GwensMom

pdx said:
What grade is your daughter in? I'm asking because mine is a 7th grader, and that made our decision to homeschool this semester easier. In our school district, 7th grade classes and grades don't matter much, whereas several 8th grade courses (math and Spanish) go onto the kids' high school transcripts.
Click to expand...
Gwendolyn is also in 7th grade. The school has been really great and they were allowing her to come in for partial days, but after only one of those she was very fatigued and she began stressing out about getting caught up with back work that she had missed. At one point she was in tears because she hadn't finished a massive touch typing packet. I told her to not to worry about it and that the teacher would understand. She hasn't been back to school since.

Yesterday I received a phone call from the school nurse and the student service counselor saying that they were going to go ahead and set up in home tutoring for her. It will be two hours a day after school hours. I think that is all they are going to do with her for now until we can get her medications figured out and somewhat working for her. They are also exempting her from the state testing for the year so she won't have to stress about that either.

I was considering home schooling, but I am not sure if we can do that or not since it is so late in the school year. We only have about 8wks left and if they are agreeing to tutoring only then we will probably just stick with that. I will be looking into the homeschooling though for next year and explore that as an option because at this point I think that the added stress is causing her to flare more.
 
my little penguin

my little penguin

Moderator
Staff member
Realize the beginning is extremely rough
DS would go and sleep a lot at the nurse's office
But at least get an hour of school sometimes more
The longer they are out the more stressed they get
But after having the right maintence med on board
No issues .
Good luck
 
pdx

pdx

That sounds really good. I thought you meant that you were hiring a tutor; I didn't realize that it was a tutor arranged by her school. I bet your daughter's stress level will go way down with this set-up.

Here's hoping that both our girls find a maintenance medicine that works for them, and can be back in school for 8th grade.
 
Sascot

Sascot

Sorry to hear that. My son is on mercaptopurine and doing well however it takes up to three months to work. Remicade seems to work quicker. Hope whichever one you chose works well. Hope your husband gets on okay
 
CarolinAlaska

CarolinAlaska

Holding It Together
We do 6MP. It was slow getting started, and she's never been symptom free for very long. I am hoping they change her to Remicade. The 6MP has never caused any side effect issues for her.
 
my little penguin

my little penguin

Moderator
Staff member
DS has tried pentasa 6-mp,Mtx, asacol, remicade and now is on humira plus Mtx.
6-mp never really worked for my kiddo
Just 8 months of symptoms
Symptoms got worse with Mtx
Remicade helped a lot
But after 8 infusions he reacted so we switched to humira


Later he was dx with JSpA so Mtx was added

Fwiw he also has had anaphylaxis to food and reacted to most contrast dyes /bees /pollens etc... So the docs knew it was highly likely for him to react
 
GwensMom

GwensMom

Gwendolyn has started tutoring and has gone for two hours every night after school lets out. That is the only thing that seems to be going well for her. She is seeing blood in her stools almost every time she goes now and she has started going more frequently. Not at all as much as she use to, but so far today she has gone 4 times. Yesterday she actually woke up in the middle of the night with great urgency and didn't make it to the bathroom on time. She hasn't done that since before she was diagnosed.

I am starting to wonder if it is not the Pentasa that is causing her to flare more. It seems like the longer she takes it the more the symptoms are increasing. We will be doing blood work and stool sample on Monday. At this point I'm still not sure what our next course of action is going to be. I'd like her to try the 6mp, but I'm concerned with how long it takes to get into her system and start working. I really don't want to keep her on pred for another 3 months or so. The Remicade sounds promising, but I'm scared to jump right up into biologics without trying the lower steps first. I have heard both good and bad stories for each and I'm just not sure which will be best for her.

As for my husband.. we are still having difficulty getting the insurance company to approve of a sleep study to confirm a diagnosis of sleep apnea. He has an appointment next Wednesday with the Urologist at the cancer center to see what his options are. He had blood work done with is normal doctor and so far everything looks really well. Nothing is elevated or low so we are hoping that is a good sign that whatever is on his kidney is benign or that it is in the very first stages so that it can be removed.

Right now we are all just taking it one day at a time. I try so hard not to think to far ahead or to worry about the "what ifs". Sometimes it is easier said then done, but if I take each thing as it comes and worry about the the problems on hand then it makes my anxiety a bit more easier to manage.
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
with symptoms returning this much, I'd call GI asap. the prednisone may have to be increased. what was her initial dose? and where is she at now? the decrease of prednisone is what is most likely the cause of return into previous bad state.
Ive been on pentasa too at diagnosis, but after initial response, I lost it after 3 weeks and disease came back as strong while at maximum dosage (4 x 1000mg/day)

as for maintenance treatments, Purinethol works like a charm for me. I have been 7 years in perfect remission in the past with no known side effect at all. Im just back on it now. it takes about 6 weeks for me to reach full effect and I take pred in the meantime. Ive been offered biologics in the past few years because of relapses (due to ceasing purinethol) and because I developed combined mild arthritis, but I have said no. I prefer going one step at a time in the ladder of treatment and to keep biologics for last resort for my crohns. I have decades ahead to live with crohns and until a cure is found, I prefer to stretch each step as much as possible.
 
pdx

pdx

So sorry that Gwendolyn is so sick still. I doubt the Pentasa is causing her to flare more, but it sounds like it's not controlling the disease, and thus it's getting worse. I don't have enough knowledge of Pentasa to know if it takes a while to start working or if you should have already seen results.

We've had a similar experience, despite starting top-down with Remicade. We started Remicade just a week after E's diagnosis, but she continued to get worse for 3 months--ending with an awful week in the hospital--until we added more and more treatments, finally ending up with the laundry list that you see in my signature. I can't believe I'm saying this, but I love all those medications, even with all their possible side effects, because E is finally getting better.

It seems like Gwendolyn probably needs additional treatment, so I agree with Lady Organic that you should talk to your GI soon, get their opinion about whether 6mp or Remicade is better for your daughter's situation, and move forward ASAP, since both take a while to work. I wish I could give you advice about which to pick, but I don't know which is more effective for UC.

Try not to worry too much about making a wrong decision. Obviously you don't want to choose blindly, but there is a lot of uncertainty in treatment for IBD, and different kids respond differently.

My husband is a physician, and (after beating himself up for not diagnosing E sooner) he spent the week after our daughter's diagnosis reading every current paper he could find about IBD treatment--he read hundreds of pages. Despite that, we still didn't pick the right magical combo of treatments for E--it's just impossible.

I really don't think there is one right choice. You just have to make your best guess using all the information you have, and if something doesn't work, you'll try something else until you find the right thing. Hang in there!
 
GwensMom

GwensMom

Gwendolyn gets 40mg of Pred right now and we have not started decreasing dosage yet. The Pentasa was added and we were going to try to start weaning after 2 weeks on Pentasa, but when we went for the follow up visit there was still blood in her stool so they decided to extend the 40 mg of Pred without decreasing it for another 2 weeks then go from there. She does not seem to have diarrhea and there is not a lot of blood in her stool just a couple blobs of mucusy blood around the stool. We get more blood work and another Fecal Occult Blood test on Monday. We are set to see our GI again on May 18th to discuss the results, but if they get them back sooner and there was still blood present the will bump up her appointment.

The other question I have is can not getting enough EN cause the return of symptoms? There have been a few days where Gwendolyn will only drink one Ensure or none at all. She is suppose to be getting three!! I try to push her and encourage her and remind her to drink her ensures, but it seems to be a constant battle. I try to explain to her that she needs them and why she needs them, but it doesn't seem to sink in. She thinks since she is eating food that she is fine. She is gaining weight and is almost back to her original weight.
 
my little penguin

my little penguin

Moderator
Staff member
Pentasa can cause bleeding to get worse - it's rare but can happen
I will tag queen gothel - she isn't around much but her kiddo had that issue .

As far as shakes
We treat them like meds -
First thing In the morning pills and he drinks his two shakes instead of breakfast .
Now that he is EEN with very limited food same thing
Doc prescribed x med - it has to go in you chose the route ( mouth or tube) period
And if they don't drink they get the you better call the doc now and explain why you won't take your meds .

Good luck
 
Lady Organic

Lady Organic

Moderator
Staff member
Location
Montréal, Canada
I wouldnt worry too much about the Ensure. EEN would have no therapeutic value in UC, only food supplement. If she has gained her weight back on through food and improvement of disease activity with prednisone that is great news. I understand that 40mg of pred is quite a high amount and for symptoms returning on this dosage is not very good. With experience, I have understood that my therapeutic dosage of prednisone is 50mg. But we are all unique and I am an adult. My first GI had started me several times on 40mg, with great initial improuvement, but that was never enough to induce full remission.
 
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