Question about flares

[Imerald]

Little Ella has been on sulphsalazine mid December. Aside from the occasional spots of blood, we've not had too many issues and have considered her in remission. Well she's been in a flare since Monday. This is the longest we've seen her with a significant amount of blood in her stools every bowel movement and tummy pain. Also, on Tuesday, she woke up like normal, had some OJ and oatmeal (like she does every day) and then vomited. She also had a low grade fever. The vomiting and fever are a first.

We called the nurse Friday and never got a call back. (We even made a point to introduce ourselves at her appt on Monday!) Not being able to talk to someone easily is one of the main reason we have a third opinion in April.

So my questions are, is it normal for her to flare so long on a med? Will they want to change her med? How long before we should be concerned? Could this possibly be a reaction to the medication? Is there anything else I should be worries about or looking for?


Susan

Mom to Ella, dx'd with UC on 11/2013.

 

[kjkenny45]

Medicines only work for a short period of time and lose their effectiveness.

If I was in your shoes (and I have been years ago) I would try 2 things. First, alter your diet and perhaps try to avoid all processed foods and essentially go gluten free. Being GF is a necessity for myself but knowing that most people consume too much wheat in their diet and todays wheat is all GMO so our bodies are having a huge problem digesting it causing gas, pain, bloating, etc.

Second more serious consideration is to try an old medicine called LDN which is Low Does Naltrexone....I started using LDN in Sept 2013 and have had excellent results and far better results than any of the 5 drugs over 6 years my doctors have suggested and prescribed. I read about LDN in 2011, asked my doctors and they said no. I finally decided to stop listening to my doctors because I have only become sicker, weaker and the worst shape since dx in 2008. I am glad I did and also am pissed I wasted the 2 years........pains have gone away, I can actually eat without sweating the need for a bathroom close by and for the first time in years I am gaining weight......

Best wishes!

 

[Sascot]

Sorry to hear she is flaring. Our GI told us that if we had a flare then the first thing they would do is blood tests, then scopes to see what's going on inside before deciding whether to change meds.
I hope this is just a short flare. If she has been good on the meds then maybe a burst of Prednisone or EN would be enough to get her feeling better again.

 

[Mehita]

Hopefully you'll hear back today. If not, keep calling. Poor thing. You were just there last week? Was all well then?

I wouldn't think this is a reaction to the med. That would have happened sooner than now if that were the case. It could just be a virus or a bump in the road too. Has she been exposed to anything?

If it is a flare, there may be med adjustments, but a change would likely require labs to confirm something is going on. Did she have labs last week?

I'd highly recommend NOT going gluten free without talking to your GI first. If there is a possibility that she might have Celiac Disease, she needs to be eating gluten when tested or you will get false results. With kids, it's important to know if you're dealing with true Celiac where damage is occurring to the small intestine or gluten intolerance where they just feel icky, but no damage is being done. A food log may be in order, but please talk to your GI first before removing gluten.

 

[Imerald]

Thanks everyone. We finally just did hear back and they want to do what Sascot mentioned and put her on a steroid for 10 days. If she isn't improving by day 3, they want us to bring her in.

Everything was good at her appt. No concerns and no labs until our next appt in June. (She's not had any new labs since she was diagnosed in November of 2013). She eats pretty much the same thing everyday, so it's not too hard to recall what she eats.

Isn't celiacs something they can test for during a scope? I thought I recall her GI saying they checked for that.


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[Mehita]

Part one of Celiac testing is a blood test. If it's positive, then they usually follow up with an endoscopy.

 

[kimmidwife]

Imerald,
Sorry to hear about your daughters rough time. However that seems like a long time to go between appts. Our doctor monitored about daughter with monthly appts for quite a while and then moved her to two months. Now until June seems a bit long. Also not repeating labs since November does not seem right either. Our daughter and I know many other kids on here that had monthly labs until they were in remission and then went to every two and then every three months. We also live in a Florida and have had a hard time finding a good doctor. I am glad you are taking her for a third opinion.

 

[my little penguin]

Yep same here .
It took us two and half years to get moved out to every three months even then we do labs every three months . Before it was every week for a while and so on

 

[Jmrogers4]

Yes we had labs at least once a month for the first year and after 3 normal labs in a row GI said we could move to every 3 months. We do them now every other remicade (so every 16 weeks) only because his are always normal even when there are problems.

 

[Farmwife]

Grace's doctors are a little more liberal on running labs but still it's done every two months and my girl still sees one (of many) of her specialist every eight weeks or so. This is done so they can keep track of her growth and any problems that arise.

My understanding about meds is they can become ineffective as in not working or the amount will need to be increase because your child's weight has increased or the disease is worsening and upping the med with help the body to get back to remission. I'm sure there's more examples but I can't think of them.

 

[Imerald]

Thanks everyone. Hubby and I talked about all of your responses and we've already decided that if this third opinion isn't a fit, we'll go back to our first GI. She was a bit more aggressive with the medication than we liked and she could be confusing during appts, but we'll just have to be more firm with her if we have to and see how that works.

I don't know what I would do with you!


~Susan
Mom to Ella, dx'd with UC on 11/13 at 2.5y/o

 

[DustyKat]

For us it was normal to have biopsies tested for coeliac when scopes were done.

With Sulphasalazine being a mild drug it may be that it just isn’t enough to keep the disease process under control. That being the case they will want to bring things under control and then likely move to a different medication.

Personally I would want labs done now, including serum inflammatory markers and faecal calprotectin. The docs and you need to have the whole picture when it comes to response to treatment or lack thereof. There is nothing wrong with objective markers (what you are seeing in front of you) but there should be clinical markers as well. I would have thought the docs would do this, otherwise how do they clinically know that your lass is responding to treatment?
If your daughter’s labs have, in the past, provided an accurate picture of her disease progression then they are invaluable tool and should be done at regular intervals.

Good luck! I hope the Pred does the trick and your girl is soon feeling on top of things again, bless her. :heart:

Dusty. xxx