This may be a little long. I'll know when I'm done typing, so bear with me. My wife an I are having a bit of a disagreement about our youngest son. He is almost 11 months old and seems to be very far behind in his physical development. He can't sit, doesn't crawl but will stand on my lap firmly if I am holding him. He just started holding his bottle about 3 weeks ago. We are putting him through Physical Therapy to try and get him up to speed.

He has been back and forth to the doctor numerous times. Once for RSV which he did have. The pediatrician goes back and forth with her growth chart. One month, OH, he's not growing, next month WOW, he's doing great. One extreme to the next gets kind of bothersome. I don't like the pediatrician but my wife feels a bond to them because she deliverd both kids. When do we say, OK let's just let him develop at his own rate with the help of PT? On top of the RSV, he's been tested for Cystic Fibrosis (Negative), EEG for seizures (Negative), Upper GI (Negative) and Lower Bowel test for digestive problems (Negative). He did have 5 ear infections in his first few months. This was alot and they suggested tubes. I felt he was too young and suggested to my rather unhappy wife that we should give it some time as I felt he was just to young. We waited and now his ears are fine, no damage and they don't suggest we do the tubes anymore. My problem lies with both the Doctor and my Wife. I feel the doctor is sending us on a wild goose chase to see what IS wrong. My wife is at the point she is convinced something IS wrong. Without the doctor even suggesting it, she now feels we MUST test for Cerebral Pulsy. And if that comes back negative, it will be on to something else. When does this all stop, even for a while? My son has been put under for the EEG cause he needed to be sleeping. He has been given Berium for the Upper GI. I feel this is just to much for an infant in his first year, especially when they all come back Negative Thank God. I pray that everything is OK with him. Now sure he exhibits lots of symtoms of lots of things, thus all the tests. But does he need a test every two months to hopefully find out that nothing is wrong? It's draining to go home every night and have my wife searching for answers to something that may not be there. I know it is good to find out early, but when do we say lets hold off? Now my wife is mad at me cause I told her I didn't think we need to go ahead with CP tests. And from my understanding (since I did read about it after her concerns were brought to my attention) it is hard to diagnose CP in anyone under two years of age. Please help me on this one. And her parents aren't very helpful either. Her mother goes histerical if our daughter cracks a fingernail or when our older son threw up, she said he should have his appendix taken out. And her father always says in a joking manner, what is wrong with him? I guess I've always been a person that likes to see how things play out. Not that I don't take care of emergencies, but after all the tests, when is ENOUGH ENOUGH? Sorry, I told you it would be long but thanks for reading and the responses!

Ciao

Argh! [removed] DS was born with a bowel obstruction (classic CF symptoms) and spent 6 weeks in the NICU flat on his back. So he's about 6 weeks behind in his physical development -- walking, crawling, sitting; however, his verbal skills are pretty good.

He passed his CF sweattest with flying colors. Even passed his first blood test. Finally when they did an ambry genetic test they determined the mutations he had were Cystic Fibrosis. He has problems digesting his food and needs to take digestive enzymes, otherwise his stools are very very loose. Other symptoms are that he tastes salty. When we kiss him and lick our lips -- salt lick.

In terms of the ear infections. DH had lots of them and bouts of tonsillitis until he was about 2 years old when they put in tubes and removed his tonsils. However, he never Had any physical developmental problems, other than he required speech therapy due to the substantial hearing loss he suffered.

Hey, thanks for the response Ratatosk and the other persons that replied. [removed] Anyways, we had a CF test done and all the others I listed already, all Negative. This issue of FINDING something wrong that may not exist is really getting between my wife and I. I want to be understanding to her and want to know if something is wrong as much as her. But, I feel like my son is being a guinee pig keeping the doctors and hospitals in business with all the tests they want done. When is it OK to say lets take a break and how do I get my wife to understand that as well? Like I said, yes he is behind and yes he does have symtoms of all the things he's been tested for and hasn't been tested for. Other than having him consistantly going in for a new test, what can I say to my wife? It doesn't help that she truely believes something is wrong, even though Thank God nothing has been Positive. If any others have a slow developing child and has turned out to have nothing wrong, please chime in. I believe that all children develop at there own rates, although I believe his early respiratory and ear infections have played a roll in his slowness!

Ciao

[removed] Don't know where you live, but sometimes in the larger cities there are children's hospitals and they see things that are more common place, where as a doctor in a smaller community or a general family practice doctor might not know what to look for.

We were fortunate that shortly after DS was born a neonatologist grabbed the ball and suspected bowel obstruction caused by meconium illeus, but this was 12 hours after he was born after another neonatologist and a peds doctor gave him the okay. Within 24 hours DS was undergoing surgery in a children's hospital.

We also have a Social Worker at the local clinic who keeps sending "right track" people to us because she thinks he's developmentally stunted. Because he didn't crawl and crawling is NOT considered a milestone 'cuz there are different ways kids crawl and some never do so. DS just started walking at 16 months, but we weren't concerned 'cuz he crawled and walked if we held his hand -- actually he ran, we figure he was just in too big of a hurray and knew he could go faster other ways. One thing DS does do that we think is absolutely remarkable is that he puts words together to make sentences. So we don't think he's tracking too badly.

I replied to your question in the general health forum, was just wondering if you got my response, I dont want to retype it if you got to read it, so please let me know. I think my info might really help you.
Thanks

Thanks Skyblue......Would you mind typing away? [removed] Thanks

Ciao

GEEEESH! This is a hard one. I can tell you that my daughter was born 8 weeks early and spent about 6 weeks in the NICU. I had a bazillion questions about her developement and NO ONE could help me. All they would say it that "she will be just fine, wait & see". I DID NOT WANT TO WAIT! I wanted to know what we would be fcing and how we could prepare for problems.

Well, my husband was more like you and did not want to rush things. He was willing to face problems, but not until they showed their ungly little face. We had several arguments about that.

When we brought our daughter home she weighed a whopping 4.2 pounds. She kept us on our toes, but as soon as we got her home, I was on the phone with the peds and anyone who would talk to me. I was able to reach a program that is offered by our state (Oklahoma) that was called Sooner Start. THey came to the house and evaluated Riley and assigned a Child Developement Specialist. He came to the house every 2 weeks and would show me ways to work with her. She was behind for about 13 months and then all of a sudden she was a typical 1 year old. BUT....we did have a CP scare and that was the longest months of my life. She doea not have CP, but the PT said that one of the 1st signs of it are very high muscle tone. That can be detected as early as birth. And you did state that you have a PT working w/your son. I would think that they should be able to give you some indication as to what to look for. I talked to her Ped about it and he refused to do the test simply because she did not have the "look" of a CP patient. WHATEVER THAT IS!

I am not sure what to tell you about your wife, I was the same way. It almost seemed like I wanted to find something wrong with her. (from an outsider) But I just wanted to be prepared! I can tell you that the internet is a great place for resources but it can also be the worst place to get info. I can tell you theses boards are wonderful and the most helpful thing I have found on the internet. Just be carefu about what you read and take it at face value until verified by a Dr. I learned that the hard way! :rolleyes:

Now, If I were you, I would back off and let him be a baby. He just might be a little slow at doing things for no medical explination at all. My cousin did not talk AT ALL until his 2nd b-day & then started talking in full sentences! & He did not walk until he about 18 months old. And there is not a thing wrong with him. He plyed high school football and got into more trouble than his parents knew what to do about. He now has a son that is behind as well. His wife freaks out, but I am sure he is fine. He just took after his Daddy.

I can tell you that your wife will probably do want she feels in her heart is the right to do for her son. So no matter what you think or how you feel, she is going to do it anyway. Just remember that she is doing out of love and fear for her baby. I realize that he is also your baby and you feel he has been put through enough in his short little life. But more likely than not MOMMA'S gonna get her way. Just remember that it is not a power struggle with her it is a mission. Try to make a pact that you will not focuss on the delays of your baby. Set an amount of time each day that is focused for him and you both need to stick to it.

I do recomend that you take him to a different Pediatrician for a second opinion. Just because you do that does not mean that your current Pediatrician is going to "fire" you as patients. She does not even have to know. But I would try to get copies of all of his medical records and have a thourough exam by another Doctor.

Please keep us posted on how things go with you.

Kim

(Did you already figure out, I am pretty long winded? :D )

Ok here goes and I hope this helps.
If this is your first child, then he might just be slower progressing.
BUT, listen
I have 4 kids, the youngest is going to be a rocket scientist, she is smart as a whip, and I think it was from watching her siblings.
BUT, My next to the youngest who is 7 she had ALOT of ear infections when she was a baby, and she didnt start talking until she was almost 4, she still talks like a baby. She also pees the bed, and she failed kindergarden.
I think that most of this is to blame on her infections.
So if the infections are gone now, and have been for a while, does it seem like he is starting to progress more?
If not then I would consider you have his hearing checked. Does he respond to sound at all?
If he does then he might just have some hearing problems, or because of the infections he didnt catch on to everything because he had a hard time hearing with the infections so it just might have slowed him down some.

OK....One more thing I have to say. I walked away from my computer and faught myself. I am not sure how good of advice this si but, I have to say it.

This is your son also. If you feel that you have to get another opinion, by all means, call the hospital and ask for a recomendation for a good pediatrician. Ask friends or co workers, ask anyone. Is there a local Childrens Hospital in your area? I have found that the Pediatricians at our children's hospital are a bit more knowlegeable in dificult health issues. They seem to be more experienced at difficult health issues. I think trhey see more than a Pediatrician that is in a small town or has a small practice.

You have the right to do this. Your wife will probably not agree, but that is OK. I know that I would go bazerk if my hubby announced that he wanted to get a different Ped for our daughter. BUT.....I doubt he could even tell you his name. :rolleyes: I take her to al of her appontments and and I think he has gone to 1 of the many she has had. I am not sure if it is the same way in your house, but you can do this. You can do it together, or you can do it alone.

OK....I can go now, I just needed to say that. I am sorry if this was not good advice, but you need to be comfortable in the care of your son as well.

OK OK OK I will shut up now.........

My son is 27 months now. We have confirmed that he has severe reflux, Sensory Processing Disorder, Spastic Quadreplegia, and Apraxia of Speech. I have put off the testing for things like Celiac, probing his vocal cords to see what the reflux has done, and checking his ph level. I just couldn't put him through the tests at the time and also enjoyed the calm. Take it from me, this was NOT the best approach.

Filling a childs first year with testing is not fun. The upside is that he is going through all of the testing at a time when he won't remember any of it. We did a swallow study on my son when he was 5 weeks old and another one when he was almost 2. The reaction was night and day and very traumatic on him during the most recent one. Testing also makes it to where you finally get taken seriously. I used to hate going into a specialists office just for them to tell me that they couldnt do anything for him until they ran a test and got the results back. When all the testing is finished, what you have left is what you have left. No more questions.

The norm for kids who are delayed is that they will be delayed in more than one area. My son has very tight leg and arm muscles so we started with PT. The older he got, we noticed that he had language delays, cognitive thinking delays, delays in executive thinking, etc. So getting on top of any delay early will help you catch other delays from their onset.

I asked my husband on what to say to your wife. He responded with "Let her go" let her go through all of this because somewhere deep inside her she feels a NEED to find out what is wrong. Honestly, some of these tests will be purely for her own abillity to sleep through the night. She needs to know that when it is all said and done, she has done everything for him that she could. There is no talking a mother out of her need to do this. It is a process just like grieving or acceptance.

My husband is a man who like things calm. He wants things to be typical. Having our youngest son threw him for a loop. He didnt want the testing, he didnt want the therapy, etc. Finally he realized that he didn't want a life where he had to watch his son struggle and there wasnt much he could do about it. Most of us say that something can happen to us and it's no big deal but it is a different story when something happens to our kids.

I hope I have helped some and good luck to your family

One doctor warned us about when we first got DS's diagnosis was to avoid the internet and library at all costs. He did give us one web address where the info was accurate and up to date. He also told us to stop mulling -- we were only allowed to mull, feel sorry for ourselves for 15 minutes a day. That's it -- rest of the time we're supposed enjoy our child.

I guess I would see if your county has a right track program where someone comes to your house. We felt we didn't need it 'cuz DS seems to be developing just fine. He goes to a day care center and the teachers work with him -- they see a lot of kids, so if something seems odd to them, they'd mention it. And as far as doctors -- they don't know everything. What do you call the person who graduated LAST in his class from medical school? Doctor! DH always tells me that we're the "customers" if we're not getting satisfaction, we should speak up or go elsewhere.

Just wanted to add. SoonerStart is the program that we have here in Oklahoma. Nationally the program is known as Early Intervention. It is for children from birth to 3 years. The service is free and offered in every state. You can ask for an evaluation from your Dr and they will contact them OR you can contact your local Department of Health and Human Services.

I agree that unless your child is in pain or suffering you should let him be for a while. These tests are too much for a baby to have to endure. Poor little guy sounds like he has been through enough already. When my son was 2 months old we started having bad feeding problems. It was a battle to get him to take a bottle and he lost some weight. We strongly suspected acid reflux. We put him on medication which helped a lot but he still had his good/bad days. I immediately wanted to take him to GI pediatrician to find out if he really had it. My doctor advised against it and said he should outgrow this give it time. Now at 8 months old he is fine and I am so glad I didn't put him through something unpleasant. Little babies don't understand all these tests so why traumatize them? I understand your wifes point of view, as she is worried and needs to know what is going on. I say think of your son and let him be a baby for a while. Finding out if he has CP right now isn't going to make it go away. I hope he doesn't and good for you for not putting tubes in his ears!

wow this is a great topic. obviously you and your wife want what is best for your son. how lucky he is to have such caring parents. he has a lot going for him right there. don't let the fact that you and your wife have a difference of opinions as it is ALL for the betterment of your little boy. it is a blessing really. as far as what to do.....

i have an opinion from both sides of the coin. i will be quick because it is a loooonnnngggg story. when i was in labor with my son, there was several complications. it left me septic and my son was actually considered still born as all he had was a faint HB, no pulse, no breathing. they got him back and he was in the NICU for 8 days. he couldn't keep any kind of blood pressure, he was on soooooooo many meds, i was a wreck. he bounced back and faught his little heart out. he was on oxygen for another 2 weeks and i don't think i slept for the first 6 weeks because of his higher risk for SIDS. i was so hyper vigilant that in the first weeks of his life i thought that he had CF, autism, RSV.....pretty much anything horrible, i was convinced.
so then one day i got a stomach ache.... it got bad after 2 days, went to the doc, said it was my appendix, went to the ER....12 hours later after a crap load of tests, they sent me for an emergency operation to take out my appendix....it WAS NOT my appendix...it was MY ENTIRE COLON INFECTED. this was particularly dangerous as i let it go for so long. i was in a haze for the next couple weeks. i had a 30% survival rate. what does this have to do with anything you ask?
because after i got out of the hospital i lost my mind. i was sure that i had every illness in the book. they couldn't tell me how i got the infection, if it would come back.....i had 12 tests done over the next 3 months. it was the worst time of my life. i was sure i was dying, or that something was really wrong.
you know what was wrong? NOTHING. i am perfectly healthy. my mind went so crazy that it crushed me for a year after the whole event. the moral of the story: your family is the most important thing in the world. if you want another opinion--get one. your wife has to understand that. if your son is eating, drinking, pooping, peeing, laughing, and acting relativly good...then NO MORE TESTS. do you see where i am getting at here?

I asked my husband on what to say to your wife. He responded with "Let her go" let her go through all of this because somewhere deep inside her she feels a NEED to find out what is wrong. Honestly, some of these tests will be purely for her own abillity to sleep through the night. She needs to know that when it is all said and done, she has done everything for him that she could. There is no talking a mother out of her need to do this. It is a process just like grieving or acceptance.

this is very true...if i was in her shoes i would have to know i have done all i could to make sure things are okay...and the sooner they find what is wrong *if anything even is* the sooner you can get the appropriate help for him.

waiting to long could delay him further if there is a problem....although i feel that the infections he had may play a big part in his delays.

if your son is eating, drinking, pooping, peeing, laughing, and acting relativly good...then NO MORE TESTS. do you see where i am getting at here?

and i also see this point as well...i feel really stongly that it was his infections that cause his delays and he will take off any day now, but i also know i have had test done on my daughter because i was worried and turns out she was fine but without the tests i would not be sleeping at night right now.

my daughter was failure to thive, weighed 11 lbs at 5 months!
tested for
*pyloric stenosis
*reflux

turns out, just needed a new formula....she now is a year old and weighs 20 lbs

then at 10 months i was convinced she had lead posioning
her test said she was a 1....perfectly normal...

sometimes mothers just need to know.....it is hard to watch your baby go through it all but somehow we get convinced that something in terribly wrong....when usually it isnt.

WOW, Thanks all for the fantastic advise. I guess I was just looking for someone to tell me I was correct in my thinking not realizing there would be others on the opposite side of the coin. It helps balance me out a bit. I still stand by my original post that I belive our child does not need anymore tests at the moment. That does not mean it is not subject to change. I just feel that his slow development was caused by his early issues. And some of the symptoms......his lack of crawling, sitting, rolling over.......his spitting up, crying fits, early ear infections, possible CF and seizures (both Negative) all fit into so many possible causes or nothing at all. I just want him to be him for a while and I tried explaining that to my wife again last night. She says....so you feel Nothing is wrong then? I said NO, I don't feel that way but I'm not about to take him to the doctor everytime he sneezes! Not the right thing to say I know as my wife got upset. I know she wants what is best for him and once again, so do I. I guess I need to listen a little more because she said when we initially talked about this that she didn't mean we should go get tested for CP right away, but maybe after PT fails. How do we know it is going to fail? Ok, good but knowing my wife and how she likes things done this instant, I took this to mean if it isn't working very quicky that this is the next test we are going to do. I guess this is just another case where I would like to let PT string out for a few months and see what happens. Maybe this is exactly what she meant, but from past experiences I took it as now. Boy, maybe we are the ones who need to see a therapist on this! Here was my suggestion to her.........

*I will stop thinking that nothing is wrong and that he is fine.....
*You will stop thinking everything is wrong and that he is not fine....

*I will start reading and trying to understand his symptoms and how they correlate to his possible conditions
*You will stop reading so much internet and stop listening to your parents diagnoses as to what you and they think IS wrong

*I know you want what is best for him and hope that you don't feel for a second that that is not what I want, even though our opinions vary greatly on this matter

*Finally, we will set up an appointment at Childrens Memorial Hospital, medical records in hand and concerns at the ready to get another opinion on our route to take


This didn't fly to well as our argument came after this. I don't want to make it look like all this falls on her, as I am more of the aggressive talker and she, the more relaxed discussioner. I'm sure I didn't make it any better last night by staying on the couch all night, but after the "I won't take him to the doctor for every sneeze" comment and she walked away, it was the best I could muster with any of the energy I had left! So anyone know of any good therapist for ourselves?

Ciao

When we got home from DS's 6 week stay in the NICU and suddenly had to deal with being parents, let alone parents of a child with a genetic disease, DH and I had lots and lots of arguments. DS developed a horrible cough and would cough so hard he'd throw up his formula. I had to hold him over the sink after he ate. At his 2 month check up the regular peds doctor heard his cough and said it was normal -- that's what CF kids do. And DH and I had many fights about this -- he accused me of WANTING DS to be sick (as if I was a psycho)and I KNEW in my heart of hearts that this cough was NOT normal. We took DS to his CF specialist in the City and he YELLED at us --"you're lucky he didn't end up back in the hospital -- your son has BRONCHITIS". He knew immediately from hearing that cough. So we got three different prescriptions and the results from the throat culture showed that DS came home from the NICU with a hard to kill bug that usually exists in NICU's caused by improper handwashing and fecal material.

So now DH knows not to put all his faith in a general peds doctor who isn't familiar with cystic fibrosis. And I try to lay out my concerns in a simple statement -- DS has a rash or a cough or a fever... I think we should.... What do you think... Simple one line conversation -- don't rehash past history, don't lay blame -- just a we're in this together, we want what's best for DS....

So I would encourage you to contact the county right track program and encourage you to seek a specialists opinion at a children's hospital.

Thanks again, just wanted to reiterate that he has had all the tests done I listed in the previous threads and they all came back Negative. As with your case, I am so sorry you had to go through all of it, it breaks my heart. But, in a polite but kind of way, you and husband had something to go off of as your son was diagnosed albeit if I remember correctly, not right away. We are working off the Negative results of all tests done and are working off of nothing but symptoms which could be numerous things or nothing at all. I just think it is time for him to be him and stop with the tests right now. Like I said, we could go on testing him for everything anytime a symptom comes up, but that leaves us with a million or so more tests to go, and I think the little guy needs a break to grow on his own.

I thin we could all use a little therapy, but as far as your situtaion goes, I think your realationship w/your wife will get better as long as the 2 of you are able to work together on trying very hard not to spend your days and nights discussing, worrying, arguing, over the well being of your son. Going to another Doctor is the 1st step. I still think that you should agree on an amount of time that you spend discussing your oppinions and ideas about your childs situation. I am not one to ever say that couseling is a bad idea, and I do think it would help you and your wife learn how to deal with eachother. But there are other things to be done as well.

I have a question for you to think about.

When you or your wife either one one sit and play with your son, do you play and enjoy his smiles and laughs. Or do you spend your time focussing on the things that he is not doing? I lost some real precious moments with my daughter when she was little. Instead of laying in the floor and playing with her, I was paying more attention to the things she was not able to do. I would try to make her set up, roll over, stand.....you get the idea. When she would get tired of me messing with her and start to fuss, I would get up and feel so discouraged. It was my husband that pointed out to me that he did not think he ever really saw me enjoy our baby. He was right. I will have to say that comment caused a huge fight & I thought he was horrible for EVER saying that to me. I thought about it for a few days and finally decided that I was going to start enjoying my baby. Of course I never muttered those words to him. :rolleyes: That is just something to think about.

I do not have any advice for you other that think long and hard about what you are about to say. As I am sure you already know that. But we Moms tend to get very sensitive when it comes to our babies and feeling that the Dad does not back us 100 % .

Hang in there and please keep us posted on your progress!

Hugs to you, Kim

Kim is right. We all need to enjoy our children. And I was just giving an example as to our situation -- fortunately we knew/know what is wrong with our child -- but as a couple, we still have differing views on how to deal with it. We just have to remember that we both love our children and we're both concerned about their health and try to work together to find a solution, not work against each other.

hi. could be completely wrong so if i'm wrong i'll apologise now, from what i've read from your thread, ear infections and he's had not walking crawling, has he had a test for Fragile x syndrome? :rolleyes:

Hi Rastafairy!

Could you tell me what exactly is fragile x syndrome? That is one of the many I have never heard of. Do you have a child with it?

Thanks!

Kim

i looked up fragile x...doesn't sound like your son to me. it is a mental retardation affecting 1 in 3,600 males ranging from severe to mild disabilities.

again, the internet can be dangerous.

a friend of mine has a 22 month old who JUST started walking. he is delayed in all areas, but her older son was too, the older one is now 4 and perfectly fine and the 22 month old is leveling out.

Again, crawling is not considered a milestone because there are different ways children crawl. DS could only scoot backwards before he caught on at 11 months -- and he started to crawl. We figured he'd never crawl because a lot of children never do -- with the flat on the back campaign to prevent SIDS, babies aren't used to spending time on their tummies and don't figure it out. None of my cousins kids ever crawled. DS JUST started to walk at the age of 16 months.

hi Ksavage, it was only ment as a query not to diagnoise, yes i do have a son with Fragile x, one of his first problems was many ear infections,that's why when he was seen by the doctor also because he was not able to sit up without support or walk that we had tests done, one of which was fragile x,so it was only a a query that's all. Hope i did'nt worry anyone too much.

If I were you, dear dad, and you are a good man, I can tell, is I would take your son to the doctor yourself. And not this doctor, a different doctor. Take charge yourself. If you think something may be wrong, please get a referral to someone else. Women are funny in this bonding thing with doctors. It sometimes obscures judgement. If you have a suspicion, do it on your own. I wish you well.

I know it's been a few days since this has been talked about but I have to post.

Have you ever gotten a 2nd opinion??

Every child is different.My 1st, walked at exactly 1 yr. My 2nd walked at 10 mos! My 3rd, who is 11 mos, isn't walking. He crawls, but it's the commando crawl. Not a "Real" crawl. At 10 mos, he wasn't even sitting up on his own, then one day he did it! Boys are typically slower anyway. My neice and nephews are all kinda behind while my kids are usually ahead in growth. They are behind with speech, but it really varies so greatly for whatever reasons, not always a medical condition.

Unless your son is suffering miserably I dont see the harm of waiting a few months to get more tests done. I know your wife cares, but maybe she is getting a little obsessed about it at this point! Just take him in for his checkups to make sure he is healthy and keep waiting.

Either get a 2nd opinion and go from there or just wait a while to see what happens. Children grow and change so much from when they are first born.
Was he a small baby when born or premature?

Let us know what happens.

April