Methotrexate

[mikayla]

Mikayla is still in the hospital. On a clear liquid diet. They gave her an injection of Methotrexate last night. She is dizzy and lightheaded.:eek2: I have read these are side effects. How long do they last? She is hoping to go home this weekend and be on a strict Ensure/Vital diet for the rest of the summer. Praying that the inflammation goes down so we can avoid a resection surgery.

 

[Tesscorm]

I'm sorry Mikayla is still in the hospital I can't offer you any info/advice re Metho as we have no experience with it but I hope the side effects alleviate very soon!

I do hope the liquid diet relieves her inflammation; my son did exclusive EN last year when he was diagnosed and it, together with a week of IV Flagyl, quickly relieved his symptoms. I hope Mikayla has the same positive response from it. :ghug:

 

[Mom2oneboy]

I'm sorry Mikayla isn't feeling well right now. Hopefully going to liquids only will give her some quick relief. My son did exclusive EN back in April and continues it along with his regular eating. He's also been having weekly methotrexate shots for the past 6 weeks. The only side effect that he has had is nausea one time when he didn't eat much before the shot. Now he eats a good meal before the shot and afterwards we have him drink a lot of water. We also don't do his EN feed via the NG tube on the night he gets his shot. I wonder if the lack of food on her tummy is causing the dizziness? Keep us posted on how she's doing!

 

[Farmwife]

I'm so sorry to hear she isn't feeling well. I hope things turn around soon for her and your family. I'll keep her in my prayers. Please keep us updated.

Farmwife

 

[mikayla]

Update! Mikayla refused the oral nutrition. She did 4 ounces and asked for the nose tube. They placed it at 3pm started the nutrition and vomited it up at 8pm. She threw the tube up. And is continue to vomit! BLOCKAGE!!!!! Right???? I am home for one night in my own bed. My husband is at the hospital dealing with the puking. Is there an end in sight? the Dr's talked about resection surgery. Why don't they just do it?????
So frusterated. Praying for an end in sight!
Thanks for your insight moms!

 

[izzi'smom]

i am sorry she is having so much trouble. While vomiting may be a sign of an ileus/blockage, my daughter had vomiting as a symptom of crohns. We alo had trouble with vomiting while she had an ng tube. Did they do an x ray to confirm pllacement? Hopeyou get some good rest tonight and that tomorrow is a better day!!

 

[mikayla]

izzy's mom, Yes, they did an xray and made sure it was placed correctly. They think too much at one time since she hasn't had any nutrition in over 7 days. They said they would try again today, but Mikayla said she wouldn't do the NG tube again. What are our choices? If she isn't going to drink and she refusing the tube.........i just wish they would do a resection surgery on her and move on. I think. UGH! So frustrating.

 

[my little penguin]

It can also be the rate of the feed with the ng tube- sometimes full strength or speed can cause vomiting.
Have they tried a slower rate to see if that helps.
We also get lots of vomiting as part of crohn's no blockage.

 

[Canadianmomto4]

I'm so sorry to hear of Mikaylas terrible time. Sending you hugs and strength to continue to help your sweet girl through this time. Keep fighting for what you believe in

 

[mikayla]

My Little Penguin, My husband said that the Drs said it was probably a gag reflex and the rate was too fast. But now is so scared. They want to try the NG tube again today.....last night she said, NO WAY! Maybe she will today. Poor baby girl! She wants to come home and have a summer so bad. I know it could be worst. We just keep on praying and hoping and so thankful for all of your encouragement!
Miks MOM

 

[Tesscorm]

Oh, its so unfortunate that Mikayla has had a bad experience with the tube. Wow, I can't blame her for not wanting to try again!! But try to convince her to give it another shot! My son was older when he learned (16) but it has been a godsend - he inserts in seconds bfr bed, has his formula overnight and removes it in the morning. It barely interfere with his day to day life. He did say the toughest part was getting over the gag reflex and he did find the sensation of the tobe in his throat bothersome for the first 1 or 2 days but both issues go away.

When he started, his pump rate was, I think, 20 ml per hour. Within 24 hrs they increased it to 200. He wa given the option of increasing it to 300 if he wanted and cud tolerate it. Also his tube size is 6 FR - I've been told here that this is infant size but infant size or not (he's 18 now ) it still does the job for him!

Good luck! I hope today is better for Mikayla!! :ghug:

 

[Mom2oneboy]

Oh, I'm sorry she had a bad experience with the ng tube. Hopefully, she will be open to trying it again today. In the beginning it's trial and error on the formula and the rate at which it's given. The first formula didn't work well for my son and he couldn't tolerate a rate higher than 90. We still only do a rate of 115. Sometimes their tiny tummies just can't handle much especially if they haven't been eating well for a while.

Like Tess's son, we use a 6FR tube. My husband inserts the tube nightly and it took a bit but they have it down to a science now. Two things that really help my son is drinking water from a straw while the tube is going in and making sure he doesn't tuck his chin during the process.

Good luck and I hope today is a better day!

 

[jmckinley]

Oh, so sorry she is not doing well. :ghug: Hoping she finds some relief.

although you aren't worried about it right now, the dizziness from the methotrexate should go away in about 2 days. If she is going to take the injections at home, be sure she takes the folic acid supplement every day but the day of injection and the day after. It helps with the side effects. Take the injection just before bedtime too so she can sleep off the side effects.

 

[izzi'smom]

I am hoping she is doing a bit better now...I can't keep up with the threads-How old is she?I know that all of the decisions are difficult when dealing with IBD, and that being an inpatient is super tough, but I am hoping that you can find something that works soon. Izz has gotten so much better about doing things that I wasn't sure she could handle-she takes bloodwork/iv's like a champ without crying and takes her meds without coaxing...it makes me sad that she is mature beyond her years but I am so darn proud of her...amazing what these kids can handle!!

 

[mikayla]

Mikayla had three hours out of the hospital today and came home to love on her puppy and lay on the couch. Only to throw up the 16 ounces of nutrition she took in today. She proceeded to vomit and we were back at the hospital for IV fluids. She kept vomiting. I called our GI dr on her personal cell number. We have an amazing GI Dr. She came in from home with her daughter to see Mik and explain things. Mik can not have steriods, remicade, MRI or surgery til 4 weeks after her surgery. June 24 was the pill camera surgery, they can not open her and remove the blockage. She is no longer on GN tube or oral nutrition. TPN will start tomorrow. She is 5'5 and 80 lbs. Fading fast. The TPN will help. I just want to see something that is positive! Holding onto our faith and so encouraged by your responses! Thank you ALL!

 

[izzi'smom]

Thanks for the update...I am going to guess that the hospital is the best place for her...maybe it will help give you some peace of mind, at least, to have a whole team of people helping to care for her. So glad you have a terrific rapport with your GI...it is so helpful!!

 

[jmckinley]

Yes, thanks for updating us. I know you have other things to take care of right now. Sorry to hear you are back at the hospital. I hope though that the TPN will get some nutrition to her and she will start to feel better. It is amazing what our kids go through. They have amazing spirits.

:hang: We're thinking about you!

 

[Jenn]

Mikayla - Hope things are going better now? I've been in and out of the board and didn't welcome you before. So sorry to hear about your daughter. I see you are in San Diego too, Childrens here is really great, who is her GI?

 

[Grant]

So very sorry to hear this, I hope they can sort out Mikayla soon & have her on the path to recovery.
Best Wishes
Grant

 

[mikayla]

Mikayla update: Thanks for all of your kind words and support. @ Jenn, we are seen at Balboa hospital since my husband is in the USMC. We started off at Children's, but since many of their Dr's work at Balboa too, it worked out that we are seen there. She has an amazing GI doctor and I have also asked for referrals to be seen at the UCSD IBS unit. We need to be seen at a place that EVERYONE TALKS the same language. I can't tell you how many times I have gone "Mama Bear" on these people.
The TPN seems to be going great and she is and will be NPO for a while. They are tweaking her dosages and teaching us how to do the home health care for her. If all goes well in the next couple of days, she should be home with the TPN pump and still following a NPO diet. Poor baby girl! I told her I would go on a liquid diet with her. She needs to gain weight and I need to loose. Ha!
The next "Magical" date is next Wednesday for her MRI. If is shows blockage, they will do a resection surgery. If the inflammation has gone down, they will start Remicade.
Eagerly waiting for an end in sight!
Thanks ALL!
Mik's Mom

 

[dannysmom]

Hi ... just read your thread now. I feel so bad for what you've been through! I am glad the TPN is helping - hope things just improve form here.

 

[AZMOM]

Thinking nothing but good thoughts for y'all. Good grief........

J.

 

[crohnsinct]

I am glad things picked up a bit for you all. Hopefully when the TPN does its thing she will have more energy and start to feel better...keeping you all in our prayers.

 

[DustyKat]

Thanks for the update hun. :hug:

So good to hear that things are settling and the TPN is going great right along with your girl!

Good luck with the MRI and with whatever path it takes you on!...:goodluck:

Dusty. xxx

 

[jmckinley]

Glad to hear that the TPN is helping. I will be praying for some resolution next Wednesday. Hugs!

 

[Sascot]

Just caught up on your thread - sorry to hear about Mikayla, hope the TPN is still going well and it is helping. Good luck for the MRI!