ANGRY or HAPPY??

[Anonymous]

I have been so absentee lately I am trying to start up a home business and between that and doctors appointments there has been no time to lurk and post.

SO………we had Christian’s well baby check up on April 24th and he was up to 16lbs 10oz and a whopping 30 inches (up 3 in in close to 6 weeks). The week prior he had tonsilitis, turned into double ear infection, after rocephin shots and omnicef rounds. He had his button put in on April 25th. AND Christian has given up the bottle and only want the sippy cup now. Only taking 5oz per day from sippy – so thankfully we have the tube…but progress is progress right?

We finally got a referral to see a ENT. I thought – perhaps we should rule any abnormalities – still trying to figure everything out. The reflux appears to be undercontrol with 30mg (15 2x) daily…now why isn’t he eating.

Christian is now closing in on 13 months – many and I say many doctors appointments with everyone saying – golly gee – we don’t really know what is going on.

THE ENT’s findings:

Tongue Tied, Very large adenoids, and constant fluid causing equilibrium issues/hearing issues in the ears.

Why am I happy – perhaps we have now found a reason behind some swallowing, tongue not moving right, speech delay issues.

Why am I angry – NOBODY has caught any of this in the past 13months.

I hate being happy that we found something wrong – but at the same time perhaps we can “fix” these issues and progress will be made. I am truly hoping that this is the “hump” that needs to be crossed in order to have Christian grow normally and get this tube out sooner than his GI expects (3 years).

Sorry or the long vent/rant/update.

[Anonymous]

I understand your mixed feelings. Everytime I take Myles to the doctor in some way I hope they find something to explain his dislike for the bottle, but at the same time don’t want them to find anything because I don’t want anything to be wrong with my little boy.

My little guy is getting enought Pravacid, too and doesn’t seem to be in pain, but he’s drinking less and less from his bottle and I have to spoon feed him. I really don’t know why, but I’ve suspected for a long time that they’re may be some ENT thing going on with him. I wonder if I should take him to an ENT like you did with Christian. So far none of the doctors I’ve taken him to have any explanation and they are satisfied with his growth, so they are not concerned. But they don’t have to feed him. Not fun!

I’m glad you finally found out what may be causing some of Christian’s problem. Is there something they can do? Will he have the adnoids removed? What about the fluid, what can they do about that?

I hope the ENT will be able to help Christian.

[Anonymous]

Laura

I think i would be both angry and happy! I think it is so great that you are still fighting for your baby… he will be so proud of you! The ENT has hopefully offered some solutions to his current problems, and maybe they do explain some of his hunger/speech issues. Who knows and you may never know unfortunately. I also always hope they find something that explains why matthew does not eat but i have given up hope. we will have a tube until he is 3 (that seems to be the magic age, by the way) and i am thankful that we have a way of getting calories into him.

So great that he has grown so much!! 30inches is great height and that means that he is getting the proper nutrition and that is so important at this age.

Let us know how they plan to treat him…. hang in there!

[Anonymous]

I agree Laura – I too would be both angry and happy. Nobody wants to
hear that something is wrong with their baby but like you said, maybe
they can now treat this issue and get him eating!

BTW – why is 3 the magic age?

[Anonymous]

Thanks for your responses.

Christine – the plan is for the next week we will use nose drops (neosenephrine (sp), and a steroid drop) see if the adenoid swelling reduces – if not perhaps steroids by mouth (a side effect is hunger). If not then removal of the adenoids. For the fluid in the ears they are talking tubes and if he is under anesthesia they will “snip” the tongue..don’t know the proper word for it.

Thais/Karen – my understanding the magic age of 3 is that at that age they will be able to better comprehend/work with the feeding/speech therapists to solve/resolve the issues regarding oral-motor difficulty. I guess that is also the magic age to enter some of the intensive therapy programs (full-time over a course of a few weeks).

This ENT is fabulous – he gave me his home number and said call over the weekend if there are issues – can you believe it home number? He is also taking a “let’s review/not operate” approach. I am very excited about that plan.

AND this Monday I have an appointment with the GI. I am going to suggest that we stop the continuous night feeds to see if we can increase daytime hunger…two week trial….hope she goes for it. I figure at this age – most babies are not eating through the night and typically not even waking for a bottle – we shall see.

Thanks again.

[Anonymous]

Karaen

My understanding of the three is something similar to Laura’s… there are a couple of things:

– most feeding programs, the intensive ones, actually i think require a baby to be about 18months developmentally (ie to understand a system of reward). By the way, Laura, i hear there are long waiting periods at these places, so maybe try to get into a program? I just know from the other board about waiting lists! Then you can cancel hopefully! 🙂 I think that will be our plan anyway.

– it can take a few months to get the behavior changed and then usually they will leave the button in for another few months (if not a year) in which months the baby does not need it but goes through illnesses etc and eats through them

– by age 3 or 4 there is peer pressure from other babies etc and they eat and so your child may eat as well and imitate etc

Who knows if all this is true. All i know is Matthew is 9months old and i know we have at least another year, judging by the way he eats now. (we still pray for miracles though).

[Anonymous]

Laura

will your GI prescribe Periactin? I know mine will at a year, but others do not until they are 2. I know that Janice is using it with Samantha and i think it was working pretty well.

I wish you the best of luck with the GI…let us knw if she agrees to your plan. Sounds sensible to me!

[Anonymous]

That sounds like a good plan…the nose drops and steroids first to see if the swelling goes down. I hope it works and he won’t need surgery. As for the tubes, every one I know who’s had it done said it helped their children, and that the surgery wasn’t bad.

Good luck at the GI on Monday.

[Anonymous]

my little guy was born tounge tied too!!! (luckily for him I realized it when he was about 2 weeks old and took him to the dr to have the membrane clipped), I hope the GI is some help to you. I know it’s frustrating when the professionals have no idea how to fix things.

[Anonymous]

Laura,

Glad to heat that the ENT is so great! How did they find out that he was tongue tied? Also how do they check out the adenoids and ears? Sorry if this sounds stupid. I’ve often wondered about hailey’s ears, but they have such a hard time testing her for anything unless she’s sedated because she freaks out so intensely that they can’t look at anything properly or hear (if they have to listen). Just wondering if this is something that they’d be able to figure out pretty quickly if they looked at it.

[Anonymous]

Jill – how was the membrane clipping procedure, how did it work, recovery time? I have not had much time to research yet.

Lori – the ENT that we went to took a history (Christian has had 2 severe ear infections since January, has had constant croaky throat, sounds like he is always congested, tonsilitis once). Basically he looked in his ears and found that even now, after 2 rounds of oral antibiotics and many shots (rocephin) he still had fluid in his ears and he is on his way to another ear infection.

The adenoids are checked with a quick scope up the nose (numbed), uncomfortable not painful…done in the office. Luckily (or not), Christian had a CT scan back in February and not only the bone structures but the adenoids were visible so he didn’t need scoped. His conclusions were made from that. It was nice to have some answers in the few hours we were there.

Just a little input regarding drops in babies noses – THE STINK! My little mover and shaker makes it SO hard to get them in – you don’t know if they are really getting – just hoping. Will be talking to the ENT about that too…but I figure it is pretty normal.

[Anonymous]

It was SUPER fast, literally half a second (but he was MUCH younger than yours, don’t know if they would do it in office like with Aidan) The dr just came in with some surgical siccors (I think that’s what they were) and opened his mouth and snip, clipped it, he cried for maybe half a second, and it did bleed a bit in the office and a small amount at home, but the mouth heals itself faster than anywhere on the body so literally by the time we got home, the bleeding (what little of it there was) had stopped. His was very very severe, as in he could not lift his tounge up at all, and you could see it forking at the tip as he tried to lift it (which is why I caught it so soon), The dr actually said her first daughter was born tounge tied and she had her dr clip the membrane. Suposedly it is suposed to reced in the womb, but sometimes doesn’t, some parents insist on wating til they are one to see if it will recede on it’s own (usually does) but I opted to nip it in the bud early as it can (as you found out) cause speech delay and make it harder for them to take the bottle, eat, etc. My sister just found out her 17 month old is tounge tied and is going to ask the dr to clip it (it’s just a membrane, not much pain with that). I would think that even with an older child the recovery time would be very fast, although like I said it might not be in office, not sure. (funny, now AIdan can twist his tounge-lol I saw it for the first time and was like OMG what is his tounge doing, lol he can twist it almost upside down) But it is a procedure that I would do no matter how old he had been, my older one is in speech in school, and I see how much he hates it!

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