Fussy Feeders - Dysphagia - a possibilty other than reflux

[erikak]

Yes, I live in Houston, Texas, USA.  Any help would be so very much appreciated.

[erikak]

another question for you:  do babies with Dysphagia tolerate solids well?  my son eats solid really well most of the time and at times will only eat that.

[Luke-n-Me]

It certainly isn't atypical that you've had the same issue with both of your lo's as dysphagia tends to run in families.  Because you are in the states, simply thick is available to you and you can get it at the website and also find places near you that sell it on the website at http://www.simplythick.com.  Some babies have trouble with solids and need baby foods thickened too.  Often they do have trouble, but there is no mold, so your lo may do fine with solids.  However, if there are some he refuses (like the runnier one like peaches) try thickening them and then see if he'll take them. 

Before you spend the money on simply thick, look for a powdered thickener in any drug store (ask the pharmacist there are many different brands).  Try thickening to nectar thick first, give it several days and if you see no difference, then try honey thick. 

Hopefully, you'll get in for your MBS quickly!  Let me know if you have more questions!

[erikak]

No one near my home sells simplethick but I am giong to order some.  I am also going to see a dr. tomorrow.  Are there any side effects to the simplethick?  Constipation? 

Have you heard if going to the smallest size nipple helped (i.e. a preemie nipple size)?  I know that with my younger son I have not been able to get him off of the newborn size nipple and he is 7 months.  I breastfed my first son so I never had the ability to experiment.  Just curious if nipple size has ever seemed helpful.

[LŠuren]

Thanks Nancy 

[Luke-n-Me]

My son always suffered from constipation and the simply thick never made it worse.  For babies who have regular bowel movements (i.e. they have never been constipated), it may make the stool a little more firm, but trust me, as constipated as my son was prior to the simply thick, if the product was constipating, Luke would have been miserable.

AS for the nipple size, I honestly can't say I've ever had a preemie nipple, but certainly, sticking with a smaller nipple size will help. 

With your son being 7 mos., I would start encouraging a straw cup and get him off the bottle ASAP.  Start by plugging one end with your finger and giving him sips and he should figure it out within a short period of time.  My DD figured out straws at 5 mos. and though Luke wasn't quite that young, it was well before 1 year with him. 

Good luck at the doctor's appt tomorrow!

[erikak]

Well... she thought I was crazy.  And I probably won't be returning to her office ever again.  But ultimately I have my referal to a speech therapist and have an appointment on Monday to have his feeding evaluated.  I also ordered some simply thick that should arrive tomorrow for me to give a try.  Wish me luck!

Some follow up questions.  When you were struggling with this how was your son's sleeping habits?  Did they improve once the feeding process improved? 

[Luke-n-Me]

My ds was only 3.5 mos. when he was diagnosed, but there was a sharp change in his sleeping pattern that directly correlated with improvements in his feeding.  Prior to getting this figured out, he napped 20-30 minutes max at a stretch, but within a few weeks, he settled easily into a perfect nap routine (1.5-2 hours both a.m. and p.m.) and was sleeping 9-10 hours by 4 months at night (probably would have been longer, but I didn't put him to bed until 10 or so).  It could have just been coincidence, but I really always attributed the improvement in sleeping to the improvement in eating. 

Sorry the doctor didn't hear you out, but at least you got your feeding consult.  Hopefully, you'll be seeing a speech therapist who really has good knowledge of this.  Keep me updated with that appt. as well. 

[erikak]

You know this whole this is nothing short of a miracle for me.....not to sound to dramatic but even if he doesn't have dyshpagia...I know it something and I'm not accepting 'teething' as a reason for 18 months.  I'm shocked at myself that I did except for my first son.  My husband was EXACTLY the same way as an infant and my mother in law told me that his first two years were the hardest thing she's ever done in life.  I know we are all so blessed to have beautiful, healthy children.  I haven't had near the struggle of some on this post but I have had my struggles with this and literally haven't slept well in 3 years! It has taken it's toll on my marriage, my first son and other relationships in my life.   I am confident we are going to get this resolved now.  And the really amazing part is that my cousin is a speech therapist and we will be seeing her this weekend at a family reunion.  She is going to gladly evaluate his eating.  She is not specialized in pediatrics but at least it will be a professional opinion.  She is also less likely to blow me off.  She lives a good distance away so she has not been entirely aware of my issues with my children.  But we grew up together as kids and I trust her and think she will listen sincerely to me.  I also have a very dear friend from college who is a speech therapist and has been for 7 years.  I have also called her since all this has come up and after listening to the details agreed that swallowing issues were a real possibility.  Had I (or my worthless doctor) even thought of this 3 years ago I would have had all kinds of resources to help me.   BUT, we are here now and going to get something done this time.

I am also seeing a bigger and bigger protest from my youngest son on the bottle and dreamfeeding is becoming more and more the only way he'll eat.  SO, I know we have to fix this now before I do have major problems with his eating. 

I mostly wrote to say:  Thank you, Thank you, Thank you!  I know I should probably keep the sight PC and spiritually neutral but GOD BLESS YOU!

[Luke-n-Me]

Wow, that makes me feel good!!   I'm so glad that in some way this has been helpful for you and I absolutely see how this could effect all of your relationships.  It's definitely difficult and hard on your nerves when dealing with something like this.  To make things worse, you have an unsympathetic (word?) physician!!!  You are certainly lucky to know 2 speech pathologists.  I really hope you get some answers to your problems!  Again, keep me posted!

[erikak]

Just keeps getting better.....I got a call back from a different speech pathologist. She was my top choice based on her work at the Texas Children's Hospital feeding center.  I was originally told no appt until Sept but they called me today and said they can see me Thursday!!!  yeah!  I don't even have to wait until monday AND I feel more confident in this lady's background. 

NOT ONLY THAT, I received the packet of simply thick that I ordered online today and we are off to a great start!  He took 5 oz from a straw cup in a matter of minutes with absolutely no problem, no objections.  No coughing, no choking, no thrashing his head back.  I tried using it in a bottle at bedtime and didn't have quite as much luck.  He took 3 oz rather quickly but then got frustrated again.  I think it may have been a flowrate issue because when I changed back to a straw cup he happily drank 3 more oz.  Did you use a special bottle?  I have a fast flow nipple on there and it seem to flow ok to me.  Not sure on that one, but I do know that I have never been able to get him to drink like that AWAKE in his precious little lifetime.

I can't say it enough.  Thank you for sharing your experience with the world like this! I will let you know how Thursday goes.

[Luke-n-Me]

If it were me and my lo was doing that well with a straw cup and taking that much from it, I would get rid of the bottles and just use the straw cup-that would be my advice.  As for the nipple size, you should just stick with the same nipple size that you were using.  My son used Avent bottles and we never got beyond a nipple size 2.  The thickener will go through the  nipple that you were already using, so if you want to try a bottle again, get rid of the fast rate and go back to what you were using!

Sounds like things are really falling into place for you!  Hope Thursday goes well!

[erikak]

Just keeping ya posted:  Today was our first appt with speech path.   She said his pattern of eating seems to be suck, suck, breath, swallow and that is what is causing his trouble.  She said a 'timing' issue with how he's trying to take bottle in.  She ordered a MBS to be done and hopefully get that completed in next two weeks.  He's only had 3 oz all day.  For some reason he's rejecting the thickened straw cup today.  Really confusing me!  He continues to relatively well on jarred baby food.  But interestingly he'll only take that standing up as if eating in a sitting or recline position is not comfortable.  Could be just coincendence though.  Still kind of a mystery.  But I think I'm getting the right help now. 
Keep ya posted.

[Luke-n-Me]

I would definitely say that you are on the right track.  That uncoordinated suck/swallow/breathe pattern is exactly what causes dysphagia in otherwise typical babies, so it makes sense to me.  Hang in there and things will straighten out.  I'm just really glad you're getting the help you need!!

[erikak]

thank you again. do you know what would be the symptoms if he did have some formula in his lungs?  He has been really fussy during the night.  He has been waking up crying every 1.5 hr or so for the last several night.  Just acting like he feels terrible but no fever, no cough, no visible drainage from nose.  really could be teething but not responding to motrin.  I did have my ped check him Monday but I've lost a little faith in her judgement.