Calling all Mom's with children who have a difficulty swallowing!

1. Did your child have an endoscopy?
If so what were the findings? Were biopsies taken? What were the results?

2. Did your child have a PH probe?
What were the results?

3. Does your child's dysphagia improve while on a PPI?

4. Does your child's dysphagia come and go? If so does it always correlate with other reflux symptoms?

5. Does your child have any other medical conditions that would cause dysphagia other than GERD?

6. Does your child have Oropharyngeal dysphagia, or Esophageal dysphagia?

7. Trouble with liquids, solids, or both?

8. Does your child seem to be in pain when they swallow?

9. Feeding therapies? Any sucess? Please explain

Feel free to give me any other info on your child's dysphagia that you think might be helpful. (preparing for another specialist appointment)

Oh WOW! I just noticed there's a dysphagia forum!!!!!

Can someone move this for me

O.K. Ummmmmmm......
does this mean that no one here can relate to these questions? That's a little scary. LOL

I'm posting this to give it a bump up, in case people missed it

Minnie,

James was initially dx with mild dysphagia earlier this year. Things have improved some, but I still see problems here and there.

As for your questions...

1. James had a scope in June. We found he had a hiatel hernia (probably causing the reflux). Biopsies came back normal. Found that the Prevacid was clearing working... esophagus looked good.

2. Also had the pH proble done with the scope. Results were normal.

3. We did see some improvement once the PPI was working.

4. It does come and go. Seems to get worse with refluxing flares, teething and illness.

5. James does have hypotonia in his face. Also, sensory integration dysfunction.

6. Oropharyngeal dysphagia.

7. James still has some trouble with thin liquids (water, juice)... gagging, occasional choking. His problem with solids is more due to him stuffing too much food in his mouth, not chewing up food enough, trying to swallow pieces that are too big.

8. No apparent pain when swallowing.

9. Speech therapy is working mainly on speech right now instead of feeding. OT is working on sensory issues in hopes it will help his feeding. No formal feeding therapy for us.

Hope that helps.

Minnie,
there is another mom, trbo-something, I know that she is nathans mom, I can not think of her username, but she is the one that wanted this forum. So, hopefully she will pop in soon.

Glad you bumped this up Minnie somehow I missed it.
1. Connor had an endoscopy in Oct. It showed some prior damage but no current damage so the Prevacid and zantac combo seem to be working.

2. He's never had a PH probe.

3. He's been on a PPI for quite a while so I'm not sure how it would be without one.

4. His dysphagia definetly worsens with a cold or when his reflux is really bad

5. He doesn't have any other conditions that I'm aware of.

6. I'm really not sure which type of Dyspagia Connor has.

7. He just had a swallow study done and they found he is at risk for aspirating the thinnest liquids like water and juice and also meds. His biggest issue though is with solids (table foods) he just recently started to chew sometimes but rarley swallows and often gags.

8. He doesn't seem to be in any pain that I can tell.

9. Ugh, feeding therapies, we are still working on trying to get him in one and get it covered by insurance somehow.

Thanks guys,
That really really helped.
UH my mind is so much more at ease, and I don't feel so crazy for thinking his dysphagia comes and goes. That's a biggy, because it just didn't make since to me or anyone else around me.
and to hear that the scopes went well as far as the PPI doing there job....big sigh of relief there! I was thinking the worst, ya know

THANKS again:hug:

1. Did your child have an endoscopy?
YES! NAthan had an EGD done (Esophagogastroduodenoscopy) He did have biopsies taken. They came back negative. Nathan also had a Brochocospy done. Fine there too.


2. Did your child have a PH probe? Nope.
What were the results?

3. Does your child's dysphagia improve while on a PPI? He's doing GREAT on prevacid, AND the thickener.

4. Does your child's dysphagia come and go? Not sure. We HAVE to use thickner with EVERY bottle



If so does it always correlate with other reflux symptoms? I'm sure nathan's was caused in part by this.

5. Does your child have any other medical conditions that would cause dysphagia other than GERD? Nathan was just softly diagnosed with Global Neurological delay. Meaning he's at a 4-5 month level, and he's 9momths.

6. Does your child have Oropharyngeal dysphagia, or Esophageal dysphagia? Esophageal dysphagia

7. Trouble with liquids, solids, or both? BOTH!! He's got 100% solid aversion. He's got the thickest feeds that you can give a baby. :( :(

8. Does your child seem to be in pain when they swallow? Not anymore.

9. Feeding therapies? Any sucess? We are starting soon. I hope they help him.

Feel free to give me any other info on your child's dysphagia that you think might be helpful. (preparing for another specialist appointment)

Nathan's a whole hurt of issues. He just came back with low iron levels from his hemoglobin test. so he'll be getting a full blood work up. One thing that i reciently learned is that Speech (vocal) is done with the same (for lack of medical terms) inside talking things, that swallowing is. and since Nathan cannot swallow proplerly he wont be able to "babble". Nathan is 100% silent.

However on the POSITIVE side of me, its NICE not to hear the same words over and over and over. And its NICE not to have to feed the kid solids. I hated that anyways LMAO:drinkalot: LOL

Minnie - I haven't been on for a really long time, but have a few minutes to get some IRDing done. I hope I am not to late for your appt!

1. Did your child have an endoscopy?
If so what were the findings? Were biopsies taken? What were the results?

No endoscope - Dr's never thought that it was severe enough to do

2. Did your child have a PH probe?
What were the results?

Same as above. No pH probe either

3. Does your child's dysphagia improve while on a PPI?

Nope. Still the same old choking and gagging

4. Does your child's dysphagia come and go? If so does it always correlate with other reflux symptoms?

Always has it - it has finally gone away though.

5. Does your child have any other medical conditions that would cause dysphagia other than GERD?

He has an enlarged muscle in his throat and that he was a preemie so not well developed when born.

6. Does your child have Oropharyngeal dysphagia, or Esophageal dysphagia?

Don't know what these terms mean, but it was with the swallow. Once he got it past that he was okay.

7. Trouble with liquids, solids, or both?

Liquids only.

8. Does your child seem to be in pain when they swallow?

Nope
9. Feeding therapies? Any sucess? Please explain. They were great at first. The SLP was great and helped me figure out what to thicken with and to what degree. Now that he is doing better I think that they are more a waste of time.

I hope your appt goes great with Eric and you get something figured out for him.

1. Did your child have an endoscopy?
If so what were the findings? Were biopsies taken? What were the results?

Nope, not yet.

2. Did your child have a PH probe?
What were the results?

Nope, not yet

3. Does your child's dysphagia improve while on a PPI?

I haven't noticed a difference

4. Does your child's dysphagia come and go? If so does it always correlate with other reflux symptoms?

It is always worse when he is tired or has a cold

5. Does your child have any other medical conditions that would cause dysphagia other than GERD?

Tracheomalacia and Laryngomalacaia

6. Does your child have Oropharyngeal dysphagia, or Esophageal dysphagia?

Not sure, he aspirates thin liquids

7. Trouble with liquids, solids, or both?

mainly liquids

8. Does your child seem to be in pain when they swallow?

Not at all

9. Feeding therapies? Any sucess? Please explain

Getting ready to start Speech Therapy

Feel free to give me any other info on your child's dysphagia that you think might be helpful. (preparing for another specialist appointment)

1. Did your child have an endoscopy?
If so what were the findings? Were biopsies taken? What were the results?
Yes - normal findings but endoscopy done ON meds

2. Did your child have a PH probe?
What were the results?
Yes - acid reflux of 5% (within normal range) ON meds

3. Does your child's dysphagia improve while on a PPI?
Yes - until recent surgery!!

4. Does your child's dysphagia come and go? If so does it always correlate with other reflux symptoms?
It does always seem to correlate with Kitty (am answering all these qu for her) with worsening reflux

5. Does your child have any other medical conditions that would cause dysphagia other than GERD?
NO

6. Does your child have Oropharyngeal dysphagia, or Esophageal dysphagia?
no idea!!

7. Trouble with liquids, solids, or both?
BOth :-(

8. Does your child seem to be in pain when they swallow?
Increasingly, yes

9. Feeding therapies? Any sucess? Please explain
Nothing available in our area, neither NHS or private...