12-12-2017, 06:26 PM   #1351
Maya142
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Also wanted to ask, what helps more, the codeine or the Lyrica for her pain? It looks like Endep is Amitriptyline - it is a tricyclic antidepressant. In small doses, it is used for IBS pain or functional abdominal pain. Some kids find it very helpful.

Has she had any immune testing? Tagging DanceMom.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-12-2017, 07:24 PM   #1352
kjb
 
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Hi again

Joint pain is why she stopped training (along with everything else really!). The pain has been largely in wrists and elbows but also in necka and back. Her cousin (my sister's son) has JIA and the GI is aware of that.

She has not had motility testing. Her issue is chronic D with up to 30 trips to the bathroom each day before being put on Questran a few weeks ago. That improved everything after the very first dose. I gather that is a Bile Acid/Salt malabsorption issue. If she eats anything too fatty then she still is no good - ate too much cheese last weekend and leaked something afwul.

Not sure about the Lyrica/Codeine balance. She has to wean off the codeine now so I guess we will find out and I'll let you know. We spoke this morning of just taking a dose in the morning and skipping the night time one to see how she goes. She hasn't had the Endep as yet - we have a script and will only fill it if the Lyrica isn't able to keep her pain levels down. I gather it works in a different way to Lyrica.

She was put on Axit a couple of months ago (also an old antidepressant) but that made her D much worse (up every 90 minutes during the night and then all day as well) so she stopped after 3 days.

No immune testing has been done at this stage. I'm not sure that they know what to do with her!!

Thanks to everyone for helping us with this matter

K
12-12-2017, 07:33 PM   #1353
Maya142
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The chronic diarrhea doesn't really fit with Gastroparesis. But the other stuff does. But I don't know, to be honest, because symptom-wise it sounds most like IBD to me. But the negative pillcam and negative scopes suggest something else.

It's possible that there are multiple issues going on too.

In terms of IBS, what medications did she try? Did she try Levsin or Bentyl for the pain? My daughter has Crohn's and Gastroparesis but finds Levsin (which is an anti-spasmodic) really helps with cramping abdominal pain.

I was wondering about Lyrica vs. codeine because I was wondering if amplified pain could be an issue. Amplified pain is functional pain - pain with no real cause. It can occur after a minor illness or long-standing inflammation or a number of things. Essentially it is over-active nerves, sending the brain pain signals when there isn't actually anything causing pain. Or they are sending disproportionate pain signals - for example, if there is a little inflammation but the child is a feeling a LOT of pain. Generally opioids do not work well for amplified pain but anti-convulsants/anti-depressants like Amitriptyline and Lyrica do.

But it does seem like in addition to the pain there is something else going on that is causing the diarrhea.
12-12-2017, 08:38 PM   #1354
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Hi again

The only medication that she had for the IBS was colofac (antispasmodic). This seemed to help at first but then she eventually stopped taking it as it wasn't doing anything more to help.

It appears that codeine is the one doing the most for her. She said that she forgot (?) to take Lyrica the other day and it didn't seem to make much of a difference to her pain levels - but she had taken the codeine. She was started on 25 mg of Lyrica but then was put up to 75 mg. She doesn't really have cramping pain - just pain. Apparently it can get stabby when it gets worse, but there is always this dull background pain (pre codeine, but better post codeine). I'm kind of hesitant to start her on Endep as many of those drugs are addictive (as is codeine I know). I'm not really sure but I guess we have to see what happens when she comes off the codeine first.

The amplified pain issue is clearly something to think about. She was referred to a hypnotherapy group for 'over sensitisation' of pain but they essentially said that they didn't think she was suffering from that. I'll have to ask her more about it tonight when I am home. She went twice, but by then the GI had said we don't think you have IBS anymore so the psychologist wasn't quite sure where to go. The kid isn't a stress head and even the psychologist that she saw stated that she seemed perfectly fine re anxiety and depression.

Thanks team!
K
12-12-2017, 09:04 PM   #1355
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Unfortunately, codeine is not a drug you want her on long-term unless she absolutely needs it. My daughter has been on opioids because of severe autoimmune arthritis (Ankylosing Spondylitis) and they honestly cause as many problems as they solve.

Amitriptyline and Lyrica are much less dangerous to stay on. I would suggest seeing pain management while you are trying to figure out the cause of her pain. They can help you figure out what meds to keep her on and what to try next that isn't addictive.

My daughter also has amplified pain syndrome - she ended up doing an intensive inpatient pediatric pain program to help re-train her nerves and to teach her to cope with chronic pain. It was an incredible help and taught her a lot.
12-12-2017, 09:15 PM   #1356
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Great - thanks for the advice re codeine.

I think a trip to a pain clinic is on the cards as I suspect that when she comes off the codeine the pain is going to ramp up again.

I'm sorry to hear that your daughter has had such a rough time too. We go along in our own little bubble until something like this happens and then you get a very different view of what is important. My nephew with JIA also attended a pain clinic to help him.

My girls symptoms do sound a lot like IBD to me too but, as I said to my girl, you can't call a ham sandwhich a ham sandwhich unless you have ham. IBD without inflamation is just not IBD. Perhaps the test in January will find something. Even better it might all just resolve itself by Xmas (hopefully!!). It really is all I want for xmas........................

Thanks again for your help and support

K
12-12-2017, 09:59 PM   #1357
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There are some kids who really do very well on Amitriptyline for pain. It's used quite a lot for IBS here and for migraines and amplified pain. So I hope it will at least control her pain a little bit.

My daughter was on the sister drug, Nortriptyline. Unfortunately, it didn't work for her. But the only side effect was mild constipation which might be a good thing for your daughter!

Sending hugs. Hang in there. If you make your own thread on the main Parents' forum, you will get more responses. This is such a long thread that sometimes people don't look here.
12-13-2017, 12:23 AM   #1358
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Thanks again for your reply and advice - much appreciated!

I guess we will just have to wait and see how things go once she comes off the codeine. Fortunately, she has finished for the school year so can afford to have a few days of not feeling too wonderful to run these 'experiments'.

Given your suggestion I will get the Endep script made up and have it ready if she needs it.

Once again I am very grateful to you for your advice and help - I will post again in a new thread if we need some more ideas but given that I have started here I'm not sure if/how it is possible to grab these posts and put them into a new one??

I hope that you and your kids have a wonderful holiday period and that 2018 brings better health for everyone. Lets hope that it is a great year for us all!

Cheers
K
12-13-2017, 01:17 PM   #1359
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I wonder if gut rest before the scope could have change (or healed) what was happening.

I know Grace couldn't be on steroids for 8 weeks before her scope.
They wanted to see what was happening before treatment started.
Formula or EEN can be used in place of steroids for healing the gut when first diagnosed. If course that doesn't work for everyone.
IMO only...I agree with Farmwife. If it is Eosinophilic, celiac or IBD related and if being on a liquid diet is helping her symptoms then it could be helping into a remission and causing the tests to look better than normal. It might be a good idea to have her eat normal at least a few days before a test. Sounds like cheese/greasy foods might be a trigger and I would incorporate gluten as well to check against celiac or eosinophils reacting to one of those foods. Our GI told us to eat gluten before my son's scope, because avoiding it would make it harder to diagnose celiac if that was the problem.

Another thing I would suggest is to think about looking for another GI doctor. My son went undiagnosed for almost a year, and then it only took another Dr. looking at his case and she had him diagnosed within 2 weeks. You may have an awesome GI doctor but sometimes a fresh look from a different doctor makes all the difference.

Again, this is my opinion only. Best of luck to you.
12-13-2017, 02:17 PM   #1360
my little penguin
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You need a normal diet for weeks before scopes not formula only them food a few days before
That heals the gut
It’s proven to work which is great but you don’t know what your dealing with
Then

They should have told you
Treatment for ibd /celiac /eosinophilia etc is formula only or avoiding wheat etc...
This means you were treating something

2 months of wheat for a valid celiac test of 1-2 slices of bread a day
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12-14-2017, 12:19 AM   #1361
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Dear Lively_child and MLP,

Thanks again for your ideas - it means a lot to me to have this support from around the world!

Unfortunately we were not told about the liquid diet being something that can 'mask' infammation so it may be just that. Or not ???? Unfortunately we also were not told about stopping gluten before taking a coeliac test. My girl went gluten free about three years ago as she believed it was upsetting her tummy. If only we had known to get a coeliac test before stopping!! Now the smallest amount of gluten (even the tiniest amount in a small amount of soy sauce) send her into a richtus. Within maybe 30 minutes she is doubled over in pain and it can make her vomit or have D. Given the need to eat a significant amount of gluten to be tested for coeliac, this just isn't going to work for her. I can't ask her to eat and be in even more pain than what she has been suffering these past few months. It is easier to just stay gluten free given that is the treatment option anyway. Her recent scope showed negative for coeliac, however, that was not surprising given that she hadn't eaten anything with gluten in it for years (unless by accident!).

Ah these kids - we love them to death but they cause us to go grey early!!

Lively_child, if it isn't too personal, may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?

Once again, thank you for taking the time to write back to me!

Cheers
K
12-14-2017, 11:09 AM   #1362
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kjb
I attribute the long time to diagnose to a few different reasons:

1. We were at a good hospital but could never get a doctor to take us seriously. He was admitted into the hospital for severe chest pain, dehydration and malnutrition for over a week before they agreed to do an endoscopy. Then they diagnosed it erosive esophagitis caused by GERD. For many months, they would not listen to my concerns that this diagnosis was wrong and that the medicines were not working. I knew the Dr's there had made up their mind on a diagnosis and were not budging easily. They even reprimanded us when we said he stopped taking the medication because it wasn't working at all and seemed to be making him worse! I researched and found a Pediatric GI doctor that had great reviews. The first time we visited she was very concerned with his test results and insisted on full bloodwork, and a full scope from top and bottom. The endoscopy still showed signs of erosion but the colonoscopy showed even more. It took the right tests to find it, BUT what it really took was a Dr willing to order the tests.

2. My son extremely under emphasizes his pain and symptoms (big strong man, you know). I knew he was very sick. But when the Drs talked to him, not knowing his demeanor, they assumed it wasn't that bad. After the scope the Dr. asked me if it was possible he had drank an acidic cleaner, she just couldn't believe how bad the damage was compared to his lack of complaining.

3. His symptoms were not necessarily typical to Crohns. In fact constipation was always a problem from the time he started eating real food. Since diarrhea is red flag symptom, and he did not have diarrhea, they did not suspect Crohns. His symptoms included erosive esophagitis, anemia, weight loss, leg cramps, fatigue and the inflammation in his blood tests. No diarrhea, no fever, no vomiting, and no blood in stool.

Mom of I (16) diagnosed at 15

Last edited by lively_child; 12-14-2017 at 11:11 AM. Reason: added thought
12-14-2017, 12:32 PM   #1363
crohnsinct
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Dear Lively_child and MLP,

may I ask why your child took so long to diagnose? What was missing that allowed the new doctor to make the diagnosis so quickly?
Hi there! I have been following your situation from afar. I haven't commented because I am not well versed on differential dx's and you are in great hands with Maya and MLP.

I just wanted to say that a long time to dx is pretty much the norm with IBD and all things gastro. There are just so many things it could be, IBD although on the rise is still not a mainstream illness and not the first suspect, and to complicate matters pediatric patients do not all present the same way or in the usual way. The dx usually comes quickly because disease was left to simmer for a long time and the kids end up in really bad shape.

Keep on fighting for your girl. You know something is wrong, you just don't know what. Make them figure out what!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-14-2017, 05:59 PM   #1364
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Dear Lively_child and Crohn'sinct

Thanks so much for your replies and thoughts - again much appreciated!

Lively_child - wow your situation sounds so similar to ours that my girl and I had a good chuckle!! She was also diagnosed with GERD but the meds did absolutely nothing so stopped them. We also feel that we were pigeon holed (with IBS) and it was VERY difficult to get the GI to think otherwise. Finally, he came around and admitted that there were way too many things that just didn't fit the IBS dx. It was only then that I felt we started to make any progress. My girl is also a tough cookie - walked around on a broken ankle for nearly a week (my fault as we were camping in a remote part of Australia and hospital was a long way away so I asked do you think it's broken or just sprained) and I suspect has a pretty high pain threshold. Throughout all of this she has never carried on with the pain, but I know it is there as her face changes colour and she goes quiet. She internalises rather than extrernalises if you know what I mean. I can't fault our GI from a testing point of view as I think she has had pretty much everything (except the MRE which may be what she actually needs the most!!). I am forever grateful that we have such a great healthcare system in this country. It is my first experience of having to be a part of it ther than an occasional trip to A&E for a broken bone.

Crohn'sinct - thanks for "adding your two cents worth" as we say here! I understand what you mean about the slow wheels of diagnosis. I see you have not one but two daughters who have been dx with Crohn's so I take my hat off to you. I also think you are right with your philosophy re knowing your child better than anyone else. I will keep fighting for her but it is difficult when I have no medical training and doctors have limited time. That is one of the key things I think that I have learnt from this experience.

Once again, thank you to you both for taking the time to help my little family (me and my girl!). I know that we will get there eventually, but it may take a little bit longer!

Cheers, K
12-19-2017, 11:04 PM   #1365
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Hi Everyone,

I'm back with another question, sorry....

My girl seems to be getting better! After nearly 6 months in this situation, a week ago today I went home from work and she wasn't that green/grey colour that tells me she is in significant pain. She said that she was feeling a bit better. Now, her pain has dropped from about a consistent 6 or 7 to a 1. She stopped taking the codeine on the weekend (as she was meant to) and then decided that as the Lyrica wasn't doing anything much (as she had forgotten to take it while still on the codeine) she decided to stop that too. She still needs the Questran otherwise she is going to be on the loo all day. What does this mean? I this the end of it? A cycle/flare or whatever we call it? What do we do now? Go back to the specialist? Cancel the ultrasound?

I'm thrilled (as it is all that I wanted for xmas!) but wondering what we should do too

Cheers
K
03-30-2018, 02:35 AM   #1366
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Join Date: Sep 2017
As to the normal test results, well they couldn't explain that but the one that really stumped them and they couldn't get a handle on was the CT scan. They could not believe that it was normal and within a week they opened her up and saw what they did. I guess the only explanation is they weren't able to fully visualise the terminal ileum. It wasn't until the day before she went into hospital the second time that a distant relation rang and told me she had Crohns and it took them 4 years to diagnose her. I started to google and things fell into place. At least when I saw the surgeon and paediatrician the next day I was armed with enough info to say to them - she is not leaving until you prove to me it isn't Crohns!
03-30-2018, 10:24 AM   #1367
crohnsinct
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Yikes! Did she not have scopes? She went straight to surgery? Poor kid. I hope she is dong better now.

FWIW they don't typically do CT scans in kids due to the exposure. They will usually opt for an MRE but in emergent cases the ER will sometimes order CT scans. But even the MRE's can sometimes miss things. My daughter had disease hiding in the folds...some kids just have stealth Crohn's.
05-26-2018, 04:52 PM   #1368
Imstillbigred87
 
Join Date: May 2018
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Hi everyone I am desperate for some help and advice. my son Zachary is 3, around 10 months ago he started having pains in his legs and tummy .i put it down to attention after having a new baby and sought help from health visitor as he just wasn't thriving ...he stopped gaining weight , was very small and petite , could not walk far , very pale with dark
Circles under his eyes! I went back to doctors 6 months ago and told them I was worried as he was not a ahappu
Child and always tired and crying . Weeks later he stopped eating I took him to a and e and they felt an enlarged liver and did some
Bloods which showed anemia and started him on iron

Week later I called doctor as Zachary was still in pain in legs and tummy and very tired ( has suffered constipation and diarrhea the whole time ) and she advised that he had high white blood count and high crp

Referred to hospital on urgent basis after he lost half a stone on a few weeks !

Met with peadiatric doctor who said he did not want to redo bloods as he was anemic , Sent away and asked our Gp to do calprotectin test which has come back at 1480.consultant referred us on to Gi consultant who we seen last week and took bloods (no results yet ) and want to see him back in 8 weeks

My son has sever leg and tummy pain still , although the iron has helped his energy levels and pale complexion I'm not sure what the docs are waiting about for !

Can anyone help if they have had similar situations ?


Thanks so much

Big red
05-26-2018, 05:19 PM   #1369
Farmwife
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Yes 😔 now remember we're not docs but parents who want to help our kiddos.

But yes that's very similar to what my 3 year old had but all her test were normal, except for her scopes.
It's not uncommon to have juvenile arthritis (JIA) with a IBD.
Grace (who's 9 now) has JIA, also.

Every kids journey is different.
Once you find out the true cause then you can move forward.

I'll tag some parents
crohnsinct
mlp
Maya142
Pilgrim

Please ask questions. We're here to help.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
05-26-2018, 05:31 PM   #1370
Imstillbigred87
 
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Thanks so much for responding I'm feeling like I can't talk about it to my husband and family now as they are not as concerned as I am !

Can I ask how long it took for your daughters diagnosis? How long before endoscopy / biopsy etc ?


Thanks so much sxx
05-26-2018, 05:31 PM   #1371
Maya142
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Unfortunately, that sounds like it could be IBD. The GI does not want to do more testing? To rule out infections at least?

There aren't that many things that make Fecal Calprotectin go up. It goes up if there is inflammation, either from an infection, from the use of NSAIDs (Ibuprofen) or from a disease like inflammatory bowel disease.

Fecal Calprotectin should be less than 50 in adults. It is higher in young kids, but your son's number 1480, would normally indicate a flare. Normally a GI would want to do scopes ASAP after seeing that. Especially in a child with anemia and stomach pain!!

I'm kind of horrified that he is making your son wait 8 weeks. Is there any way you can get a second opinion?
05-26-2018, 05:40 PM   #1372
Imstillbigred87
 
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Thanks again

The GI doctor said he wasn't really going with calprotectin test even though I did remind him of just how high this number was ! They said they would rather try not to do endoscopy and just wait and see how he is in couple of months. I'm not to sure what my rights are with second opinion but do you think I should maybe get in touch with the consultant and say I'm
Not happy about it?

Thank you xx
05-26-2018, 07:45 PM   #1373
Farmwife
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Thanks so much for responding I'm feeling like I can't talk about it to my husband and family now as they are not as concerned as I am !

Can I ask how long it took for your daughters diagnosis? How long before endoscopy / biopsy etc ?


Thanks so much sxx
My daughter got the flu at 3 months old and was never the same.
Her Gi symptoms showed then.
However, because her smile was bright and her test were normal, no one listened.
By three she had stopped eating and pain everywhere. Her first Gi did the scopes and the biopsies showed what was happening.
Dec. 12 at the age of 3 she was dx. A year later she was dx with Jia.
After dx she was placed on formula thru an NG tube (tube thru the nose ) This was so hard on us but it gave Grace all her nutrients. Its used to help the gut by letting it rest because the formula is already broken down.
Grace had other health issues, so her journey is different, like every buddy on this forum.
05-26-2018, 10:41 PM   #1374
pdx
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So sorry that your son is having such a rough time. My daughter was older (12) when she was diagnosed with IBD, but we had a similarly difficult time getting to a diagnosis. My daughter was having significant symptoms for about 6 months, but it was only at the point when she really started having a lot of pain, diarrhea, and losing weight that her pediatrician ordered a calprotectin test. The results came back really high, and I assumed that we'd see the GI right away, but the earliest available appointment was in 6 weeks.

We knew that there was no way that our daughter could make it 6 weeks, and within a few days, she was so weak and sick that we took her in to urgent care. The doctor there admitted her straight to the hospital, where we saw the GI, who ordered scopes and an MRE for later that week. The scopes confirmed IBD and her treatment started just a few days later.

So that's a long way of saying that if your son keeps getting worse, you should consider taking him back to his pediatrician or to urgent care. Even if they can't make a diagnosis, they will recognize the signs of a child who is very dehydrated or malnourished or in severe pain, and that can often speed up the diagnosis process.

I hope that you get a diagnosis soon, whatever it ends up being. It's very hard to wait while your child is suffering.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
05-28-2018, 09:46 AM   #1375
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Imstillbigred87
I agree with pdx on the going back to urgent care or GP. If your son does have an IBD, it is such an invisible disease it is sometimes hard to get a diagnosis until the disease has become serious enough for Dr’s to look into.
We were in same position as pdx, with a 3 month wait to see a GI when we decided my son was too ill to wait any longer. We went to the emergency room and he was admitted for weight loss due to not eating, severe anemia and dehydration. Because his case was determined to be more critical due to the hospital admission, we were able to talk with a GI doctor within 24 hours. Even then, I had to push the doctors to do testing. They were hesitant but I knew he was very ill.
One thing I have learned is that you might need to be more insistent or a “squeakier wheel” to get through sometimes. One time I even consistently called the GI twice a day to ask if they had a cancellation that he could get in sooner (politely) . They eventually got tired of me calling and worked him in, lol.
…if your son does have an IBD…and others probably have better advice on this…but when my son is flaring, I don’t push him to eat solid food. I keep him as hydrated as I can and offer broth and Pediasure for nutrients.
I wish the best of luck to you.

Mom of I (17) diagnosed at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec
06-02-2018, 05:33 PM   #1376
Imstillbigred87
 
Join Date: May 2018
Location: Glasgow, United Kingdom
Thanks so much to everyone for sharing their experiences with me .

After noticing on a prescription from the GI doctor to GP they said diagnosis " constipation " I went into serious mummy mode ! I contacted my Gp who is going to back me up as I push for investigation ! The first paediatric doctor I seen has said he was referring my son to GI specifically for endoscopy because of the calprotectin level yet Gi says constipation ! Sorry for the rant just totally gobsmacked bout it all.


Over the last few days my son has become very tired again And is not eating as much and just keeps saying he's not feeling
Very well again!

I wanted to ask if any of your children ever played whilst lying down ?

His nursery had noted this the last time he started getting sick ! Instead of playing and moving around he will lie on his back or side and play on the floor ! It's so strange to see it's like he just has no energy to move !

I've contacted the consultant and he has given me a telephone appointment for Thursday so I will let you know what the result or that is !timebeing tho Zachary is not very well at all and if this continues over the weekend I will take him to GP again on Monday to see if she can push it forward and if all fails it will be a and e for us this week ,


Loads of prayer of health for everyone ,


Thanks
06-03-2018, 12:44 PM   #1377
Maya142
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Wow. Your poor little guy!! He must really not be feeling well to lie down and play. That just breaks my heart.

Did they check recently if he's anemic? It sounds like he could be. I hope they are also checking iron studies - especially Ferritin.

My daughter had a slightly low hemoglobin with a VERY low Ferritin (iron stores), which is called iron deficiency anemia. In that case, you need to take iron - either orally or by infusion. My daughter could not tolerate iron supplements - they made her horribly nauseous and miserable. Plus her Ferritin actually fell further while she was on them.

She did really well with iron infusions - they worked like magic, especially for her fatigue (which was her major complaint).

Honestly, it sounds like your son needs scopes ASAP. I REALLY hope the GI consultant hurries things up. They can always admit to do urgent scopes (at least in the US).
06-04-2018, 11:59 AM   #1378
Imstillbigred87
 
Join Date: May 2018
Location: Glasgow, United Kingdom
Thnks so much for your information ! Zachary is anemic and is already on iron supplements.i just received his blood results which stated that he is still iron deficient so will continue on the iron .


He's getting sicker! Sweating bad and crying with pain in legs and tummy ! Doctors tomorrow but will take him to emergency care if he gets any worse ! He's so grumpy too.


Your advice and words are appreciated so much
06-04-2018, 12:04 PM   #1379
lively_child
 
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Join Date: May 2017
Location: Arkansas

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Imstillbigred87
I understand your frustration. As I mentioned in a previous post, our first GI doctor diagnosed my son with GERD, and would not look any further. Constipation was also a problem for my son.

It did take a 2nd opinion from another Pediatric GI to get a diagnosis.

As to the playing while lying down, I'm no doctor, but that could be a symptom of an IBD or even celiac disease. Before diagnosis and medication, my son was exhausted all the time. He slept a lot and didn't feel like doing much more than watching TV most days He would try to get up and do the things he found fun, but I could tell it was all he could do to get the energy to get off the couch. He was very anemic and not absorbing nutrients well.

Hang in there and keep trying to get through to the doctors....

Mom of I (17) diagnosed with Crohns at 15

Current Treatment:
Remicade started in June 2017
Methotrexate Injections 25 mg weekly - March 2018
Vitamin D supplements
Iron Supplements
Folate supplements

Past Treatments:
Imuran
Prednisolone
Nexium
Prilosec
06-10-2018, 08:28 PM   #1380
Lynda Lynda
Senior Member
 
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Join Date: Feb 2018
Location: Arizona

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Thnks so much for your information ! Zachary is anemic and is already on iron supplements.i just received his blood results which stated that he is still iron deficient so will continue on the iron .


He's getting sicker! Sweating bad and crying with pain in legs and tummy ! Doctors tomorrow but will take him to emergency care if he gets any worse ! He's so grumpy too.


Your advice and words are appreciated so much
I don't even have a kid and this bothers me.
It has been 6 days. How is your son doing?
💕
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