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Crohn's Disease Forum » Parents of Kids with IBD » 3 years looking for answers


 
07-10-2016, 10:21 AM   #1
silec
 
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3 years looking for answers

Hello everyone, i'm new to this forum, crohns & UC. Thanks so much for allowing me to join. I'm a mother to twins boys 4.5 years old. One of them more so than the other has had problems from about 14mths old with weight loss and what i was told was repeated viral infections with high temps.At 2.5 years he was diagnosed with GERD as a result of an ENT scope and prescribed omperazole. Its worked for about 6 months. He gained weight and was happier in himself. Within an hour of the first dose his pot belly disappeared and his reluctance to eat disappeared. To make a long story short about a year ago I noticed he was passing sediment in his urine Up to a quarter of the urine sample would be sediment. The urine went to the lab many times but always clear. He regularly had scrotal and or abdo pain. He was admitted to hospital for tests - initally a barium swallow. No reflux detected. Since just before his 2nd birthday he was drooling profusely. I mean profusely. A speech and language therapist examined him to check his swallow. She found it to be A1 but noted that after eating his behaviour was suggestive of pain so an ODG was ordered - nothing was found. After the ODG I spoke to the Gastro. I gave him every obscure symptom my child had and he suggested a calprotectin test. The results came back 'slightly above normal' I was told that that could indicate infalmmation anywhere in the body. It was not pursued. That was Oct 2015. By Dec 2015 both boys were passing large amounts of sediment in their urine. In Dec 2015 both were diagnosed with Hypercalciuria(passing large amounts of calcium in the urine). I was told that was it; that there was nothing more wrong and more or less told to put up and shut up. My family doctor started sending their urine to the lab everytime I brought either of the boys to him. Abdo pain was the predominant reason for those visits. As a result of those visits we now have several urinalysis with microalbuminuria. We also have a record of weight loss in both boys. I recently read an article where it described a link between IBD and hypercalciuria, so a calprotectin test was ordered for the boy who didnt have it done before. The result was 196. Its just in recent days that I made the link between microalbuminuria and crohns - I believe the albumin appears in the urine during a flare up? has anyone come across this? My boys also crave salt. I had assumed this was a kidney issue but I have also read recently its a crohns issue too? The stool sample is now at the lab for the boy who had the slight positive test last year. I read that crohns can in rare cases cause the drool i see in both my boys - one way worse than the other as the disease can affect anywhere from mouth to rectum - can anyone confirm? I was reading an article before I wrote this and saw mention of ketones. They have been seen occassionally in their urine along with bilirubin, but have been ignored. My boys have no energy and I have regularly noticed increased respiratory rate in one of them especially after eating. One of the boys recently had blood tests for suspected purpura (red bruising) which I have read links to crohns Sorry to be so long winded but itís a story that has taken 3 years to get to here and here is still nowhere unless their paed accepts everything so can anyone help me piece together IBD, hypercalciuria, microalbuminuria, ketonuria, bilirubinuria and increased respiratory rate sometimes with low blood oxygen and finally, purpura. Thank you in advance.
07-10-2016, 02:36 PM   #2
Sascot
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Hope you get some answers soon, I struggled to get my son diagnosed and my daughter is undiagnosed but struggling for a couple years now. I'm sure others will come along with more info for you
07-10-2016, 03:08 PM   #3
silec
 
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Thank you so much for your support. Its good to know you are not alone
07-10-2016, 03:23 PM   #4
CarolinAlaska
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Sounds like a crazy amount of specific symptoms that one would think could be figured out easy enough... I'm sorry it isn't more clear...
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07-10-2016, 03:35 PM   #5
silec
 
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Thank you for saying that - I always thought so too but when you go to a nephrologist they don't want to look at or have no interest in anything outside kidneys. All way too specialised. One thing I forgot to mention was that amount of joint pain and gout type pain one of the boys has - neck shoulders, hips and knees. He was seen by a rheumatologist who said there was no problems in theses areas and if he complained of pain I should take him to the GP or a physiotherapist to document the findings. As it happens I took him to a physio and just asked that he examined top to toe. She found problems in all the areas above and a few more! I have her opinion in writing for the Paed next month which included her opinion that he has juvenile arthritis.
07-10-2016, 04:06 PM   #6
CarolinAlaska
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Thank you for saying that - I always thought so too but when you go to a nephrologist they don't want to look at or have no interest in anything outside kidneys. All way too specialised. One thing I forgot to mention was that amount of joint pain and gout type pain one of the boys has - neck shoulders, hips and knees. He was seen by a rheumatologist who said there was no problems in theses areas and if he complained of pain I should take him to the GP or a physiotherapist to document the findings. As it happens I took him to a physio and just asked that he examined top to toe. She found problems in all the areas above and a few more! I have her opinion in writing for the Paed next month which included her opinion that he has juvenile arthritis.
Wow, I was thinking the rheumatologist would do a little more searching to figure things out. Has he/they had an elevated crp or sed rate? Any stool changes, blood in stool, diarrhea? My daughter has drooling with her seizures, but not otherwise. How about parathyroid tests?
07-10-2016, 04:57 PM   #7
my little penguin
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Joints with Ibd or migratory joint pain with normal blood markers
Can be juvenile spondyloarthritis
Might be worth looking at that rock
http://www.spondylitis.org/Learn-Abo...ndyloarthritis

Good luck
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07-10-2016, 05:02 PM   #8
silec
 
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Twin 1 has rarely had a solid stool in his life. He passes between 1 and 4 bowel movements per day. Anything from watery to mushy. I have never seen blood. He is toilet trained but asks for a nappy to poo. He says it hurts to sit down to poo. The physio found he is unable to squat. I don't know if this is the same problem or 2 different problems. He also complains of itch in his rectum. Last July he was hospitalised for tests but discharged with clear results. 5 months later the consultant rang me to tell me that his TSH was low! That was rechecked and normal. To the best of my knowledge he never had CRP checked.
Twin 2 suffers chronic constipation. His CRP was high once. He has had the recent Calprotectin result 196. He also has constant low leucocytes - 7 times in 14 months and always the same reason given to me - he has a virus.
Both have pot bellies - twin 1 worse and both have almost constant abdo pain.

All in all there has been a lot of bloods done but always the basic ones over and over

Last edited by silec; 07-11-2016 at 04:12 AM.
07-10-2016, 05:25 PM   #9
silec
 
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Joints with Ibd or migratory joint pain with normal blood markers
Can be juvenile spondyloarthritis
Might be worth looking at that rock
http://www.spondylitis.org/Learn-Abo...ndyloarthritis

Good luck
Thank you for that.
07-10-2016, 06:40 PM   #10
xmdmom
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So salt craving suggests salt wasting. What tests did the nephrologist do? Have serum chemistries (Sodium, Potassium, Chloride, HCO3 or CO2, Calcium) been normal?

When was the oxygen low? Frequently or on one occasion?
07-10-2016, 10:15 PM   #11
CrohnsKidMom
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So sorry to hear you are going through this with both of your little boys. Poor little guys! So frustrating when specialists pass the buck to the next specialist. I hope you get to the bottom of the issues soon, and get a diagnosis and proper treatment plan. Take care.
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07-11-2016, 04:42 AM   #12
silec
 
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So salt craving suggests salt wasting. What tests did the nephrologist do? Have serum chemistries (Sodium, Potassium, Chloride, HCO3 or CO2, Calcium) been normal?

When was the oxygen low? Frequently or on one occasion?
I'll start with the calcium because its what I'm most familiar with. Both have normal serum calcium BUT serum calcium accounts for 1% of calcium in the body and in order to keep it normal calcium is drawn from tissue and bone to keep serum calcium normal. Therefore the last place to find abnormal calcium is in the blood. For this reason a bone density scan is normal procedure with a hypercalciuria diagnosis. Unfortunately my boys haven't had one. Why I don't know. But its certainly on my list of questions next month when we return to paed.
Potassium and Sodium both checked on occasion - normal
Chloride - No
Hco3 Co2 - No. Is this in any way connected anion gap? if so then twin 1 was tested once in emergency. It was ok. On that occasion his BP was 133/72 and so cold they couldn't get his blood ox.

Twin 1 has also had the low blood oxygen the most. Originally happened in hospital in 2014 they did a chest xray and diagnosed peri-bronchial inflammation. There were no consolidations ruling out pneumonia but decided it was an old 'undiagnosed' pneumonia!! 6 months later he had a repeat chest x ray at my insistence - same result. In sept 2014 he became very listless. I took him to the family doctor and insisted on blood oxygen being checked. It was 90%. But they sent us home because his resps were in the normal range - even though he had to be carried in to the doctor and out again. If I knew then what I know now. It has happened regularly since then. I bought a finger monitor and have videoed him with increased resps and the reading on the monitor. Incidentally he was given steroids once only for this but on that occasion the drool disappeared. All in all it happens more often after eating. He has no wheeze so i'm told not asthma and too young for pulmonary function test. In Twin 2 I have seen it rarely but definitely still there.

Last edited by silec; 07-11-2016 at 06:00 PM.
07-11-2016, 04:43 AM   #13
silec
 
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So sorry to hear you are going through this with both of your little boys. Poor little guys! So frustrating when specialists pass the buck to the next specialist. I hope you get to the bottom of the issues soon, and get a diagnosis and proper treatment plan. Take care.
Thank you
07-11-2016, 08:15 AM   #14
CarolinAlaska
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Don't you wish there was such a thing as pediatric internal medicine specialists? My daughter usually has normal routine labs and her Crohn's was missed for 12 years. My initial thoughts on your kids: celiac, Crohn's, Ehler Danlos or other connective tissue disorders. My daughters, who both have asthma, rarely wheeze. One daughter was thought to have recurring bronchitis. Asthma does not present as consolidation on chest xray though. Have your boys seen a pulmonologist?
07-11-2016, 10:24 AM   #15
silec
 
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Don't you wish there was such a thing as pediatric internal medicine specialists? My daughter usually has normal routine labs and her Crohn's was missed for 12 years. My initial thoughts on your kids: celiac, Crohn's, Ehler Danlos or other connective tissue disorders. My daughters, who both have asthma, rarely wheeze. One daughter was thought to have recurring bronchitis. Asthma does not present as consolidation on chest xray though. Have your boys seen a pulmonologist?
No they have never seen a pulmonologist. There were NO consolidations on the xray - just an assumption of an old undiagnosed pneumonia. He also had an echocardiograph at the time and all ok. Earlier this year a grade 3/4 heart murmur was heard by the Paed he will see next month. I knew by her face she had picked up something serious. She told me he needed to see a cardiologist without delay. Now Ive been told that this heart murmur in 2013, that it was related to infection/temps and nothing to worry about. So when she was worried I was too. turns out grade 3/4 is structural defect. He had another echo - no defect found at all. When he was hospitalised in Feb last he saw several doctors all who said they couldn't hear any murmur so I quizzed the Paed on the day he was discharged. She agreed that structural defect murmurs didn't disappear but denied she graded it 3/4 and said she graded it 2/3. I pointed out to her that the changing heart murmur could connect with the changing blood oxygen levels but she refused to listen. I checked with the GP because he had a letter from her after she found the murmur and the letter clearly states 2/3/4.
As far a coeliac disease - they have both had the antibodies test done several times. I have also had them on a strict gluten free diet for a few months on 2 occasions with no change.

Elher Danos is a new one on me. must check it out. Thank you

Last edited by silec; 07-11-2016 at 07:25 PM.
07-11-2016, 06:05 PM   #16
silec
 
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Don't you wish there was such a thing as pediatric internal medicine specialists? My daughter usually has normal routine labs and her Crohn's was missed for 12 years. My initial thoughts on your kids: celiac, Crohn's, Ehler Danlos or other connective tissue disorders. My daughters, who both have asthma, rarely wheeze. One daughter was thought to have recurring bronchitis. Asthma does not present as consolidation on chest xray though. Have your boys seen a pulmonologist?
How was the crohns picked up with normal routine bloods? Just Calprotectin?
Both my boys have a dry cough Twin 1 almost contantly.
07-11-2016, 06:52 PM   #17
my little penguin
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Have they seen an allergist ?
Constant dry coughs can be simply post nasal drip
Or cough variant asthma
Some doctors prefer the term reactive airway disease for younger ones
Both my kids were dx before age 5
Ds was dx at age two but he had lots of ER worthy wheezing
Most docs don't recommend pulse ox at home
By time your pulse ox drops on a finger read you should have already been at the ER
We were told red flags to watch for in both kids
Behavior is a far better indicator in little kids

Also please don't get stuck on one dx
Ds fit everything for EGIDs especially EOE so I literally read everything I could joined a support group where everyone said this is what Ds has
Had multiple specialists say this is what Ds had

Fast forward 8 months
Scope proved Ds did not have egid or EOE
He had crohns which was not on anyone's radar at all

Not matter what group you join the folks there will "see" what they know
And there are multiple things that Ds fits well on paper still but not ehat he actually has ( still working on those ones )
07-11-2016, 07:23 PM   #18
silec
 
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Have they seen an allergist ?
Constant dry coughs can be simply post nasal drip
Or cough variant asthma
Some doctors prefer the term reactive airway disease for younger ones
Both my kids were dx before age 5
Ds was dx at age two but he had lots of ER worthy wheezing
Most docs don't recommend pulse ox at home
By time your pulse ox drops on a finger read you should have already been at the ER
We were told red flags to watch for in both kids
Behavior is a far better indicator in little kids

Also please don't get stuck on one dx
Ds fit everything for EGIDs especially EOE so I literally read everything I could joined a support group where everyone said this is what Ds has
Had multiple specialists say this is what Ds had

Fast forward 8 months
Scope proved Ds did not have egid or EOE
He had crohns which was not on anyone's radar at all

Not matter what group you join the folks there will "see" what they know
And there are multiple things that Ds fits well on paper still but not ehat he actually has ( still working on those ones )
Thank you I know that is sound advice. The only diagnosis I have is the hypercalciuria. That was made by a Paed nephrologist in a childrens hospital. There are several types and 7 months on I still don't know which type. I have made the connection from hypercalciuria to crohns but also to another condition called Bartter syndrome which I have checked out. As it happens someone here on this forum has asked about me about sodium potassium chloride and bicarbonate levels -all minerals involved in Bartters - when I mentioned salt cravings Its reassuring when someone else mentions these things. When you read about rare conditions, you doubt yourself, even when you are ticking all the boxes.


Although both boys are similar they are also different. For Twin1 I have also looked at amyloidosis and familial Mediterranean fever but that's a long shot.
07-11-2016, 09:41 PM   #19
CarolinAlaska
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How was the crohns picked up with normal routine bloods? Just Calprotectin?
Both my boys have a dry cough Twin 1 almost contantly.
She was failure to thrive, had chronic diarrhea and didn't have a lick of puberty at age 13, plus knee pain. The GI had a high index of suspicion going into the colonoscopy, which was inconclusive, so she had a pill cam which showed ulcerations throughout her GI tract.
07-11-2016, 10:30 PM   #20
CarolinAlaska
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Yeah, at this point I don't know what is causing all of Jae's issues. First you look at her symptoms then they led to diagnoses of individual problems. Then she got so many individual diagnoses I started thinking that one person doesn't just develop so many random issues. Then I tried to put it all together to fit into this syndrome picture or that one. Finally I realized that it really didn't matter because the docs are going to just shake their heads and try to treat the symptoms anyway... The most hope and help I ever got was when we were in Alaska and she was diagnosed with Crohn's disease. They tried various treatments, and each one made her better and better, but then we moved to Illinois and they stopped looking at her as a Crohn's patient, although they didn't change her diagnosis in the charts or her meds. She still had symptoms just not as bad as before. I tried to get them to step up her meds to biologics, but because they didn't "see" active disease, they stopped stepping up her meds. They just left her there for the last 2 years. (In the fall she got c.diff and treating that did help, but she's never gotten to normal.) It doesn't matter what label they write in the chart if they can't make it better or if they are going to second guess themselves all the time. I hope that your babies' docs can do better.
07-12-2016, 07:16 AM   #21
polly13
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Hi Silec, hope you and the twins are doing ok, Im in Ireland also so I do know how difficult it can be to finally get an IBD diagnosis. My little girl who is almost 8 was diagnosed with Crohn's at 2 years and 10 months, by the IBD team in Crumlin. I cant determine from your post if you have seen this team - our experience is that they are excellent but if you have seen them your experience hasn't been the same. Some of the symptoms that you describe such as the toileting problems, the constant drooling, being tired all the time and the joint pain all ring true in relation to IBD for me. The symtoms of IBD can sometimes be very non specific and are often attributed to something else particularly in very young children as our experience was neither the GP or the general paediatrician even thought of Crohn's, mainly becuase they are unlikey to have seen a case in a child as young as your boys, therefore if you havn't been referred to the team in Crumlin - it might be something worth looking into, if you want I can recommend our GI to you who we find excellent.
It can be so frustrating to get a diagnosis in Ireland, Lucy started showing symtoms at 9 months and it was two years before she was diagnosed, this was largely down the symtoms being non specific before the Crohn's fully declared itself, but in my opinion it was more down to lack of knowlege and awareness on the part of the GP and the general paediatrician who we were seeing in our local hospital. From what I have heard from other parents we were lucky to get a diagnosis so quick!!! thats becuase I insisted on a referral to the GI team in Crumlin.
I wish you the best and if there is anything I can do to help let me know.
Polly
07-12-2016, 07:33 AM   #22
silec
 
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Hi Silec, hope you and the twins are doing ok, Im in Ireland also so I do know how difficult it can be to finally get an IBD diagnosis. My little girl who is almost 8 was diagnosed with Crohn's at 2 years and 10 months, by the IBD team in Crumlin. I cant determine from your post if you have seen this team - our experience is that they are excellent but if you have seen them your experience hasn't been the same. Some of the symptoms that you describe such as the toileting problems, the constant drooling, being tired all the time and the joint pain all ring true in relation to IBD for me. The symtoms of IBD can sometimes be very non specific and are often attributed to something else particularly in very young children as our experience was neither the GP or the general paediatrician even thought of Crohn's, mainly becuase they are unlikey to have seen a case in a child as young as your boys, therefore if you havn't been referred to the team in Crumlin - it might be something worth looking into, if you want I can recommend our GI to you who we find excellent.
It can be so frustrating to get a diagnosis in Ireland, Lucy started showing symtoms at 9 months and it was two years before she was diagnosed, this was largely down the symtoms being non specific before the Crohn's fully declared itself, but in my opinion it was more down to lack of knowlege and awareness on the part of the GP and the general paediatrician who we were seeing in our local hospital. From what I have heard from other parents we were lucky to get a diagnosis so quick!!! thats becuase I insisted on a referral to the GI team in Crumlin.
I wish you the best and if there is anything I can do to help let me know.
Polly
Hi Thank you so much for replying - i'll pm you - i'm also in Tipp.
07-14-2016, 08:20 AM   #23
Catherine
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"Dry cough"

Do they have the cough all of the time?

Has anyone tried treating the cough with a asthma medication preventer?

My DD had a "nervous cough" no other symptoms of asthma. We got our asthma dx after a medication trail and the cough went away within days. My DS "cough was attention seeking" she dx with severe asthma in 30s having never had an asthma attack.

Don't rule out asthma yet.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-14-2016, 10:18 AM   #24
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Hi and a late welcome.
My Grace was dx at 3.
It was a long road to a dx and we still are trying to figure out the whole picture for her.
If you have any questions for me please ask away.
Btw, I have silent asthma. By the time or was dx I already had a bit of damage in my lungs and didn't even realize it.
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I'm mom to............... Little Farm Girl 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
07-14-2016, 10:58 AM   #25
silec
 
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"Dry cough"

Do they have the cough all of the time?

Has anyone tried treating the cough with a asthma medication preventer?

My DD had a "nervous cough" no other symptoms of asthma. We got our asthma dx after a medication trail and the cough went away within days. My DS "cough was attention seeking" she dx with severe asthma in 30s having never had an asthma attack.

Don't rule out asthma yet.
Thank you Catherine. He was given inhalers in June 2014 by a paed who had an interest respiratory medicine. They made a huge difference for about 2 weeks then we hit rock bottom again. Unfortunately the family doctor didn't agree with the paed and gave me no guidance or support when the inhalers didn't work. She maintained that it proved he wasn't asthmatic. We returned to the Paed who prescribed the inhalers he told me that he would like to see him during the periods of low blood ox/increased resps but has he was 3 hours away that was never really possible.

Your information has encouraged me to revisit this issue again. Thanks
07-14-2016, 11:05 AM   #26
silec
 
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Hi and a late welcome.
My Grace was dx at 3.
It was a long road to a dx and we still are trying to figure out the whole picture for her.
If you have any questions for me please ask away.
Btw, I have silent asthma. By the time or was dx I already had a bit of damage in my lungs and didn't even realize it.

Thank you also on 2 counts - asthma & crohns info. I'm lining up a few questions - I've read a few things over the past few days which may make my original post a bit clearer
07-14-2016, 11:55 AM   #27
DanceMom
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My daughter has asthma that presents with a dry cough that turns to a wet/productive cough. She doesn't have classic "asthma attacks" and wheezing is only audible with a stethoscope. The first few inhalers she tried weren't helpful. You definitely need to see a Pulmonologist.
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Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

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07-21-2016, 12:30 PM   #28
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Just a quick update. After a few days of complaining of jaw pain, Twin 1 was brought to the paed dentist and a large ulcer was found on the underside of his tongue. The dentist had identified it as a major aphthous ulcer. Has anyone any experience of same? thanks in advance
07-21-2016, 12:33 PM   #29
my little penguin
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Ulcers are common in
Crohns
Bechets
Arthritis
Sweet syndrome
And I m sure other things
Plus some people just have mouth ulcers for no reason
07-21-2016, 12:37 PM   #30
my little penguin
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Did the dentist biopsy it ?
That can sometimes give the cause
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