Ok..I'm new to this site and am hoping for other Mom's to help me out. I have two kids, daughter who is 4 and a son who is 11 months. My daughter was very typical from birth to now. My son however has been a whole other story. During pregnancy he had chylothorax, which is fluid leaking from the thoracic duct causing fluid to collect in the left chest cavity. That lasted for about 10 weeks (wk 20 - 30) and resolved itself, thank goodness. His birth was normal and he was healthy. At 3 months old he began teething and came down with cold type symptoms and neither of those two things have stopped since with the exception of one week at 6 months and a three weeks at 8 months. Symptoms are drooling from teething of course, runny nose which is half the time thick and nasty and half the time thin and clear, coughing, wheezing and chest congestion. He has all teeth except his eye teeth and is currently cutting those as we speak. He has been tested for allgeries via a blood test, cystic fibrosis, swallowing study for acid reflux, chest x-rays, whooping cough, RSV and breathing treatments as if he had asthma. Nothing came back positive or indicative anything is wrong. He is a horrible sleeper and wakes up several times at night. He is also now behind in gross motor skills and communication skills and requires physical therapy. He is 11 months and cannot transition into our out of a sitting position, does not pull to stand, does not crawl, does not get up on all fours and he has never even tried to do these things yet. He is always breathing shallow and frequent. He has a flared rib cage and no muscle tone to his trunk. He can sit up if you put him into position but he hunches forward and he can hold his own weight standing if you stand him up and hold him. He says Mama, Dada and Nana but doesn't point or communicate other than crying when he wants something. His doctor has all but given up on him into figuring out what the problem is and they of course will not prescibe much b/c he is 11 months old. A final note, his soft spot on the top of his head is closed prematurely according to his doctor and we have an appointment with a neurologist to see if this is causing any of the problems he has with chronic sickness and/or delayed gross motor skills and communication skills. Anyone out there that can relate to this, figured it out, or know of ANY suggestions to make my baby feel better??? A few things I forgot to put in there initially..we did soy milk for a month when he was 5 months old and there were no changes. We have seen a pulmonologist at Childrens Hospital in Cincinnati who thought he either had cystic fibrosis, acid reflux or possibly aspirating his formula while drinking, or asthma. The tests/treatments they did came back as negative for all those things. The issue with the dev. delay is b/c he HATES to be on his stomach and he expends much of his energy with breathing and doing small bursts of activity or at least that is what the PT and OT tell me from their evaluations. He just flat out doesn't feel good so doesn't feel like doing anything. I think he hates being on his belly b/c it's that much harder to breathe in that position so he immediately flips to his back. The last thing we have is an ENT which I plan to also do through Childrens Hospital.
New update...the pediatrician sent us to a neurologist at Cincinnati Childrens Hospital due to the gross motor delay. They wanted to be sure that there was no pressure on the brain causing problems with the gross motor skills. The CT scan showed no pressure, no abnormalities and no problems. The neuro doctor also had blood tests done to do metabolic testing because he felt my son's muscle tone was quite low even despite he isn't exactly mobile yet. The tests came back fine except one, a CPK test. The normal range for my son would be 31-350 and my son's result came back at greater than 32,000. They even did the test twice to be sure they didn't have a false test result and both tests came back the same. So the neuro doctor says the next step is a muscle biopsy which will be scheduled very soon. When I asked what are we dealing with or looking at they told me Muscular Dystrophy and the type that they believe he fits is Duchennes. My family is literally beside ourselves with this news. I cannot believe this! If anyone reading this post has any insight on this situation please let me know. We are desperate to see if there is just some other explanation for this and if anyone has had a similar situation we would love to hear from you.
Chronic congestions could point towards environmental or food allergies; however, with the other symptoms I would definately continue consulting the doctor and seek a specialist recommendations. Best of luck.
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Might be time to start looking at specialists (you'll have to ask your pediatrition for a referal if your insurance requires it), got a Children's Hosp in driving distance? I would start with Pediatric ENT, 11 months is too long for a baby to have mystery, constant resp issues. Glad he's going to the neurologist, that may just shed light on EVERYTHING you've mentioned here. Meanwhile, I would probably go on line lumping all the (seemingly) unrelated symptons together at Google and see what you come up with. Good Luck to you Mamma, REALLY stessful having a sick baby and not being able to help him, be good to yourself, and keep us posted!
My son has allergies - since birth I swear. They don't always show in tests that young.... What you can do at home.... Use saline daily to flush his nose - they hate it, but it's good for them. Also get a humidifier for his room for sleeping. When I'd shower I'd put him in there w/ me in his vibrating chair and steam up the room! You can also try some baby vicks on his chest at night. I was also told to cut the milk. Not sure about formula, but there must be soy out there, and then we put my son on rice milk at one year which was much better that cow milk for him. I think 11 mos is old enough to try liquid zytec for a week to see if symptoms improve. However, I'd check w/ the ped first. Maybe try an allergist to get the amt to take. Finally, I agree w/ the other poster. I have a friend whose daughter had HUGE adenoids, and b/c of that speech and eating issues. She had them out at 2 and was a different kid. Don't give up. Try and ENT and Allergist - would be my advice! Good luck.
don't give up like the doc. keep taking him to the doctors until someone can give you the real anwser. god bless him. and your whole family. be stong and keep fighting for him. good luck. R.
Go to see the dr... hopefully the neuro you are going to is pediatric.. also go to a bone type of pediatric dr.. keep going until you get to the bottom of what's going on... it sounds llike he has a breathing issue and maybe a muscle issue.. (just how i feel) but something is going on.. and the sooner you find out.. the faster they can start dealing with how to take care of him, and help him to catch up... keep asking drs. for info on where to go and what to do.. until you feel you get the right answers.. Good luck.. God Bless.. you are doing the right thing...
Maybe being referred to some kind of childrens hospital... a Specialist... beyond your Pediatrician...
Hi L.,
I am so sorry that you're having so much trouble figuring out what's going on. My daughter suffers from chronic congestion and chronic cough due to a surgical repair to her trachea which left a weak spot, aspiration which is something that swallow study should have ruled out for you, and allergies. While the reasons for her illness are different, I can tell you that the best thing that I have found for her chronic cough is honey and sometimes honey with a little lemon juice mixed in it when it gets really bad and it seems like she needs to get something up. Since your son is 11 months, you can't give him honey yet- you'll have to wait until he's twelve months old, but that's not far away. I read an article about using honey in the Vanderbilt University Medical Center paper about it and checked with my pediatrician who was also at Vanderbilt University Medical Center, and she agreed that it was a good option for my daughter. She also said that you can't overdose on honey so not to worry about that. I have found that what works best to quiet a coughing spell is to give her 6 or 7 small squeezes of honey in her baby spoon (just a little squeeze- maybe a large pea size amount) in pretty rapid succession. Below is a link to the article. My daughter had pretty severe gross motor delays and speech delays at your son’s age. Chronic illnesses can cause those. My daughter also didn’t want to be on her belly because of a number of reasons, but that delayed her development too.
It also turned out that she had some fluid on her ears which was detected by her audiologist, and after it remained there for a period of time, the ENT placed ear tubes and her speech picked up a lot after that. In addition, she was in a speech study at Vanderbilt where researchers came into our home to teach me how to teach her to speak, and that was incredibly helpful, but I think that the only places that they are doing that particular study is in Nashville, TN and somewhere in Florida- a joint project. I put a link to it below. Maybe you can find a similar program in your area or contact them to see if they know of one. My daughter is 3 now and she is ahead on speech and language for her age now and at age level cognitively. She still has some gross motor delays but she is catching up there too. She still has a lot of other problems medically and fine motor delays, but overall things are getting better for her. And very importantly she is an incredibly happy and delightful child- a real joy! Have you looked into early intervention in your area? They were able to provide a teacher to come to our house an hour every week and work with my daughter, and they also came to some physical and occupational therapy appointments so that they could help me incorporate the exercises into our home routines better. I googled early intervention in Indiana, and it looks like the third site below is where you might want to start if you haven’t contacted them already. I’m hoping and praying you figure out what’s going on with your son soon- I know it’s not easy!
http://www.mc.vanderbilt.edu/reporter/index.html?ID=6056
http://kc.vanderbilt.edu/kidtalk/index.html
http://www.in.gov/fssa/ddrs/2633.htm
I cannot answer the questions as far as his dev. delays, but congestion can be as simple as a milk intolerance. It won't show up on an "allergy" test. It didn't with my son, but I know as soon as I took him off "milk" based formula and then when he was a toddler he drank rice milk. He did much better. As soon as I introduced milk back in, he would get congested again. So it is possible he has an "intolerance" of some sort. The other issue my son had was enlarged adenoids. When those were removed he could breathe MUCH better. I hope you are able to find out what is going on. Good Luck. Maybe some other mothers will have some good suggestions. HUGS
Wow, I just contacted my bf sister about this. Please get him to see a throat and ear specialist. Long story short her son had constant running nose and was barely breathing at night. In the end the little boy at 3 had to get surgery done to open his breathing ducts because he was barely breathing at all.
I'm not a doctor and have not experienced this with my own children. However, I did do a search after reading your post, and I think it would be a good idea for you to google (as another mom suggested) the symptoms together. I searched "flared rib cage difficulty breathing poor muscle tone in infants" and came up with several articles that sound a lot like what you are describing. But since you have been around your son, you are in a position to read those things and say "Well, that doesn't sound like what we're dealing with." Or at the same time, you may read something and say, "Oh my goodness, I never put these things together before." While it is still most likely that you will NOT be able to figure out what is wrong with your son on your own, I think it is helpful to understand the scope of what you're looking at and to become familiar with certain terms (like hypotonia= poor muscle tone) so you can communicate more effectively with his doctors and understand the things that are happening test and treatment wise.
Best of luck to you. I hope you find some answers soon.
