Twin With Cp And Feeding Issues

[INDIANAMOM]

HELLO! I'M NEW HERE TO THIS BOARD. I WAS WONDERING IF ANYONE HAS A CHILD WITH CP AND FEEDING ISSUES. MY DAUGHTER IS A TWIN BORN AT 26 WEEKS AND 3 DAYS. SHE HAS A SHUNT DUE TO A GRADE 3 IVH. SHE IS NOW 28 MO. ACTUAL BIRTH AGE. THE PROBLEM IS ABOUT A YEAR AGO SHE COMPLETELY GAVE UP THE SPOON SO NOW SHE GETS ALL OF HER FOOD INCLUDING STAGE 3 FROM A BOTTLE. THE THERAPIST HAVE RAN DRY ON NEW IDEAS. WE HAVE TRIED EVERY SPOON THAT THEY MAKE. WE ARE GETTING READY FOR SPEECH THERAPY TO SEE IF THAT HELPS. ANY NEW SUGGESTIONS WOULD BE GREATLY APPRECIATED.

[twinglez]

Is the OT a specialist in feeding issues? There are special techniques to help decrease the tone while feeding CP kids as well as positioning. Consulting with an SLP who also specializes in feeding is always helpful.

Not all OT's are skilled or trained in the feeding issues of kids. Check around and see if there is a feeding clinic as well. Talk to your OT if you are comfortable, or call the Children's Hospital for a referral to a specialist.


Has there been a swallow study done? What happened that she gave up the spoon?

Good Luck.

[INDIANAMOM]

I HAD MENTIONED THE FEEDING ISSUE TO HER DEV.PED HE SAID THAT HER NOT WANTING TO USE A SPOON WAS PART OF HER HAVING CP. I DON'T KNOW WHAT MADE HER START NOT WANTING THE SPOON WHEN SHE WAS SO GOOD AT IT BEFORE.

SHE HAS AN OT THAT SHOWED US SOMETHING THAT MAY WORK. SHE SHOWED ME HOW TO TAKE MY INDEX FINGER AND GO FROM SIDE TO SIDE WITH A QUICK JERK UP ON THE ROOF OF HER MOUTH. I ALSO TRY CONSTANTLY TO GET HER TO TAKE A SPOON AND SHE GETS REALLY MAD. SHE LOCKS HER JAWS. WHEN I DO GET A BITE IN WHEN SHE'S NOT EXPECTING IT SHE GAGS HERSELF.

SHE DOESN'T HAVE A TEXTURE PROBLEM, SHE EATS TEXTURED FOOD FROM A BOTTLE WITH A LARGE HOLE IN IT. SHE HAS NO PROBLEM DRINKING HER MILK. SHE GOES TO THE CP CLINIC AT RILEY CHILDRENS HOSPITAL IN INDIANA. ON HER NEXT APP. I WILL ASK FOR HER TO HAVE AN SLP EVALUATE HER.

THANK YOU SO MUCH FOR RESPONDING, PATTY

[twinglez]

She might have a "hyper sensitve gag" which means she gags easily. Have the OT work on some tech for distracting as well. Especially if the gag is behavioral. I use to bang or tap on the table when one of my kids would gag, more behavioral in this case and it helped. I would also slide my finger, gentle touch, down on the throat tell them to swallow...

Some CP kids have reflex biting. If she does this, instead of pushing the jaw down ( I don't really mean pushing but putting pressure down) to open the jaw, put the pressure UP (not a jerk motion) that usually triggers a reflex to open the mouth.

Have the OT or SLP look at head and neck position. Some CP kids this is a big issue. For example, look at your DD's feeding postion, where is her head and neck when taking in food. Try copying that position yourself and eating. If her head is pointed up, she might be gagging just from that positionn. Try eating with your head raised and swallowing, it is very difficult.

When you go to the hospital also ask if they have a feeding clinic. That way you know that everyone there speciailizes in feeding issues.

Good Luck

[Mrs. Q.]

My Thomas is 6 1/2 yrs old and has Dyskinetic CP; which means he is 100% dependent and in constant movement with CP "tendencies". Whatever that means.

Anyways, we've had feeding issues since birth. I don't know enough about your DD and the adivice given is very good. But....

We've had lots of ups and down, gains and losses and regains. Is that a word? Anyways..... I've learned that CP or not Thomas is a kid. I have to remind myself that I'm his Mom. I have to remember not to coddle him. Whenever he lost ground in the feeding area I had to be a "mean" Mom and feed him his spoon food first as much as safely possible. We even used a nuk to get him to swallow. I got to be pretty fast at getting that nuk in his mouth too. I wouldn't even pour his milk until I was done with his spoon food. Otherwise he went for what was easy. He fought me for a little bit but he caught on. I also found custard yogurt by yoplait to be a god sent. It has a slippery texture that slides down his throat even on bad days. I put a little yogurt on the spoon and then add some of his other food and it goes down much better.

How are you at blending food? I have to say I hate it. To get the right texture is not easy.

I know how tough it is to watch your child struggle so to eat. Stand strong. As long as your Doctor says you can feed her with a spoon do so even if it is only one or two times. I found that if I gave Thomas a couple spoonfuls, waited 5 minutes and tried again wait and do it again. I tied to push off giving him his milk as long as possible. Make for a long meal but it worked.

We have had 3 swallow studies done. They are very helpful. You can see how much you can push and be safe. They always tell me to rotate food and milk. I don't. Milk was the easy way to fill up so he wouldn't eat his spoon foods. I just watch him very carefully and give him small spoons. What kind of spoon do you use? Speech, back in Birth to Three , had given us a plastic flat spoon. We've been using it ever since.


Well I've said enough. I hope something I've said can help you.

I'd like to hear how things go. You've been through a lot stop and hug your kids. They are the gifts you need to remember what's important.
I find myself in awe in how Thomas knows just when I need to see his great smile. For a kid that is 100% depentant he always brings me back to where I need to be.

Have a great day!!
:)

[twinglez]

Wow!! It sounds like you are doing an awesome job and know exactly what your son needs, especially with the milk last thing. I agree with that. Wow what a smart kid for figuring out that he had to eat before getting his milk.

I didn't mean to mislead you, my DD has mild low tone and speech problems and DS has SI issues, fine motor and speech. But I mislead you when I spoke of feeding kids with CP. I am a Ped Occupational Therapist (currently a Full Time SAHM)and that is where I get my expereince with some CP kids and other kids with feeding issues. I am sorry I wasn't clear enough.

Unless you measure and take notes getting the right textures is almost impossible to duplicate. I usually just wing it and see how the kids do and either add more texture or more liquid. Even then it can change day to day depending on what's happening with the child that day. As far as the spoon goes, it's always hard to find the right fit (which usually means trying a bunch until you find the right one). As far as the length of the meal, if it works keep at it. But try to decrease the time gradually (1 min increments a week maybe) so he isn't taking as long.

Again, I am sorry I misled you.

[INDIANAMOM]

WOW!!! I LOVE ALL OF THIS ADVICE. I WAS KIND OF WONDERING WHO YOU MISLEAD. THE POST ABOVE YOURS IS MRS Q'S. I SIT MACKENZIE IN A HIGH CHAIR, THE KIND THAT RECLINES(NOT RECLINED FOR HER FEEDINGS) BUT SHE DOES LIKE TO LEAN HER HEAD BACK. I PUT A SMALL FOLDED BALNKET BEHIND HER HEAD TO KEEP HER FROM DOING THAT. HER OT GAVE US A SPECIAL SPOON CALLED THE MAROON SPOON. HAVE YOU HEARD OF THAT ONE?

ALSO IF YOU HAVE ANY SUGGESTIONS ON CRAWLING I WOULD APPRICIATE THOSE TOO. DD IS AT THE POINT OF GETTING UP ON HER HANDS AND KNEE'S WITH OUR HELP AND SHE LOVES TO DO THIS. SHE WILL KEEP HER HEAD DOWN AND SOMETIMES LIFT UP,BUT NOT TO OFTEN. WE HAVE TRIED MUSICAL TOYS AND LIGHTS TO GET HER TO LIFT HER HEAD.

I HAVE BEEN NOTICING IMPROVMENTS AS SHE GETS OLDER ESPECIALLY WITH HER EYES COORDINATION (SHE HAD SEVERE ROP). THANK YOU FOR THE ADVICE YOU HAVE GIVEN ME. I AM BY ALL MEANS GOING TO FIND OUT ABOUT THE FEEDING CLINIC.


PATTY

MOM OF 17 Y/O C-ERA 12-19-86
TWIN 2 Y/O MACKAYLA AND MACKENZIE 8-24-01

[Mrs. Q.]

Is the Maroon spoon maroon in color? The handle kind of goes into the scoop part. And the scoop part is a little wider and has a very shallow scoop; almost none.?

We tried the towel behind his head to stop him from going back also. Didn't work though Thomas is to strong. I put my hand on top of his head, closer to his forehead, to hold his head in the right place to eat. With a little pressure he actually eats better.

Your DD is getting up to crawl. How exciting!!! Have you ever noticed how creative you've become trying to come up with ways to help you child? We have a hook in the ceiling. (It's in one of those board that could hold a small elephant.) Anyways, we have a hammock chair and a bouncer. Couldn't you make a harrness that would support her weight at the right height so she could be on her knees. That would free your hands to move her arms and legs. That way you and a friend could pattern her. Or find a scooter and add a cushioned piece of wood to make it the right height.
No suggestion about holding her head up. Thomas doesn't keep his up either. We just keep telling him to put his head up. Oh... we do tap the back of his neck thinking that will cue him to lift his head. Sometimes that works. Maybe even tickeling (sp?) the back of her neck with something fuzzy would draw her head up.

Dumb ? What is ROP? I'm on brain freeze.

It's snowing here so I got to get the kids out. Yeah!!!

[twinglez]

LOL, Well that's what I get for not paying attention. I thought is was IndianaMom and didn't realize it was a WHOLE other person. I will pay better attention in the future.

Mrs Q has great ideas for the crawling. Scooters work well if they are raised a bit to support the trunk while the arms and legs crawl. If you are working on the trunk as well, it helps to have two people, who to help give tactile cues to the tummy and back while another helps to encourage the eyes to look up.

Talk to your OT/PT about a lycra-type outfit that helps a bit in in CP kids. Ask if something like that would help, now that she is on the move.

It's been about 4 years since I have worked as an OT, since I moved and got pg then became a mom of twins. So I am not familar with the name of t he spoon itself. I would have to look in my books to know what it is.

Ask the OT if she (or you) can make a small padded pillow that would velcro to the chair to provide better head support for feeding. Some clinics have feeding chairs that they can loan out. Or even make an insert, if necessary out of triwall for support, depending on the needs. But if it is just head positoning ask about a pillowor padding (with velcro - so you don't have to keep repositioning it).

[Mrs. Q.]

I've done that before too talking to someone and then it ended up being 2 different people.

We were all talking the same things so it worked just fine.:D :)

Whoever invented velcro is making a ton of money off the handicap. Can you imagine? I use velcro for everything.

[INDIANAMOM]

HELLO! SORRY IT TOOK ME SO LONG TO GET BACK. ROP IS RETINOPATHY OF PREMATURITY IT IS A EYE DISEASE THAT AFFECTS PREMATURE BABIES. THIS IS WERE THE BLOOD VESSELS GROW WRONG IN THE BACK OF THE EYES AND CAN POSIBLY DETACH THE RETINA AND CAUSE BLINDNESS. MACKENZIE HAD STAGE THREE WHICH WAS SEVERE. HER TWIN SISTER HAD STAGE 2 WHICH CORRECTED ITSELF. SHE REQUIRED NO SURGERIES OR GLASSES. I GOT MACKENZIE A LITTLE SKATE BOARD TO HELP HER LEARN TO CRAWL. SHE DOEN'T WANT TO USE HER RIGHT ARM AND HAND THAT MUCH SO IT'S MAKING IT A LITTLE MORE DIFFICULT.SHE DOES PUT PRESSURE ON IT AND KEEPS HER HAND OPEN.

THANKS FOR THE IDEA ON THE PILLOW. I HAVE ONE THAT CAME WITH HER CARSEAT THAT HAS VELCRO STRAPS. I WILL USE THAT BECAUSE I DON'T USE IT IN HER CARSEAT, WHEN SHE FALLS ASLEEP HER HEAD GOES FORWARD.

ALMOST FORGOT TO TELL YOU,MACKENZIE HELD FOOD IN HER MOUTH AND I DID THE RUNNING MY FINGER DOWN THE FRONT AND SAID SWALLOW. SHE DID IT, I WAS SO AMAZED. THANK YOU !..


WE ARE GOING TO LOOK INTO MAKING HER A HARNESS ALSO.
WELL I'D BETTER GO ,MACKAYLA WANTS ME TO READ A STORY.

TALK LATER , THANKS AGAIN PATTY

[Mrs. Q.]

Yeah!!!

The skate board idea is better then the scooter. They are skinnier.

Enjoy the story!

[twinglez]

How was the story?

You made me smile when you told me about the swallowing, so COOL!

I know what you mean about the head falling forward in the car when they fall asleep. DH bought one of those walnut shell "C" pillows and would put it on our oldest DD's neck when she got in the car, it was inevitble that she fell asleep. This way her head/neck was support better. It's a small travel kind for the car, but instead of using it for behind the beck, DH put it off the the side (he was afraid she would feel like she was being choked if it was in front). I always tilted her carseat back so her head wouldn't flop forward when snoozing. I always reached over and fixed her head, I would think she has got to be uncomfortable, but then I would rememeber...she is comfortable enough to fall asleep, it is only bothering me! LOL

Keep us in touch with how the feeding and crawling are coming I love hearing all this stuff.

[INDIANAMOM]

HELLO! BOTH GIRLS ARE NAPPING SO I JUMPED ON HERE. MACKENZIE LOVES THE SKATE BOARD. I ALSO PUT HER IN THE BEAN BAG CHAIR AND SHE LIFTED HER HEAD UP, HER SISTER CLAPPED HER HANDS AND SAID GOOD GIRL. I ALSO DO HER HAIR WHILE SHE SITS IN IT. HER HAIR IS ALMOST TO THE CENTER OF HER BACK AND GETS VERY TANGLED. I AM GOING TO GET ONE OF THOSE C SHAPED PILLOWS FOR HER TOO. I WAS ALSO WANTING TO KNOW IF YOU KNEW OF ANY REALLY GOOD EXERCISES TO STRENGHTEN THE BACK? MACKENZIE CAN SIT IN HER HIGH CHAIR FOR SOMETIME,ITS ONE IF THOSE THAT RECLINE AND HAS A SUPPORT SO SHE WON'T SLIDE. WHEN I TRY TO SIT HER ON MY LAP OR ON THE FLOOR SHE SLUMPS OVER AND THEN JERKS BACKWARDS. ONE THERAPIST TOLD ME TO SIT HER ON MY LAP FACING ME,THEN TAKE BOTH MY HAND AND PRESS HER INTO ME WITH MY HANDS ON HER BACK. ONE OTHER THING, WHAT DOES THE BRUSHING DO? IS IT FOR SENSORY PROBLEMS? OUR THERAPIST SAID MACKENZIE NEEDED THIS AND THEN CHANGED HER MIND AND SAID SHE DOESN'T. MACKENZIE LOVES TO BE TOUCHED, HELD AND MASSAGED, BUT ONLY LIKES ME AND HER DAD TO DO THIS. SHE DOESN'T LIKE THERAPIST TOUCHING HER TO MUCH BUT LOVES FOR THEM TO JUST HOLD HER, SHE HAS EVEN FEEL ASLEEP. SORRY SO LONG! THANKS, PATTY

[Mrs. Q.]

to help with swallowing. I tried it and it helps. I think it's such a calming thing that Thomas relaxes enough to just let it happen and not fight it.

Thank you for the suggestion. I could go back and see who it was but no time. So thanks!!!

[INDIANAMOM]

TWINGLEZ GAVE THE GREAT ADVICE ON SWALLOWING. MACKENZIE GOT A NEW MOBILE FOR HER BED. SHE CANNOT PULL UP YET SO I THOUGHT IT WOULD BE SAFE. IT IS THE SYMPHONY IN MOTION WITH MOZART AND SHE LOVES THIS. I HAVE NEVER HEARD HER LAUGH SO MUCH. I AM NOW TEACHING HER TO TURN IT BACK ON HERSELF. SHE LETS ME KNOW WHEN IT'S DONE. SHE ALSO STARTED PLAYING A GAME WITH ME. WE TAKE TURNS REPEATING A NOISE OVER AND OVER AND THEN I WILL CHANGE THE NOISE AND SHE LAUGHS EVERYTIME. I NEVER GOT TO HEAR HER LAUGH UNTIL ABOUT 6 MO AGO. I JUST RECENTLY GOT HER TO SMILE, I LOVE WHEN SHE SHOWS ME ALL OF HER TEETH. SHE HAS SUCH A PERFECT SMILE.


TALK LATER, PATTY

[Mrs. Q.]

I have to say Thomas' smile is the greatest. He always smiles at just the right times, most importantly when you need it most.

See how they make you see what's important? The little things like a smile, a laugh or just being able to see her teeth. Those are important and should be appreciated. I sometimes forget that. But Thomas keeps me in line. Thank goodness!

[twinglez]

Mrs Q, you're not really stroking the neck (altho it's great that it relaxes your son) but it is stroking lightly the throat to give the child a tactile cue for swallowing.

It's cool the kids know just when you need those smiles and don't theyjsut melt your heart?!

[INDIANAMOM]

HELLO! I MISS YOU GUYS. JUST WANTED TO CHECK IN TO SEE HOW EVERYONE IS DOING. I AM IN THE PROCESS OF GETTING MACKENZIE A BATH SEAT. THEY ARE PRETTY EXPENSIVE. THE ONE I AM LOOKING AT IS $425.00. OUR PRIMARY INSURANCE WILL COVER 80% BUT OUR SECONDARY WILL NOT COVER THE CO-PAYMENT. THEY SAID IT IS CONSIDERED A LUXURY ITEM. CAN YOU BELIEVE THAT? WHAT IS LUXURY ABOUT GETTING TO SIT IN A BULKY SEAT TO TAKE A BATH BECAUSE YOU CAN'T SIT UP? OH WELL, I HOPE EVERYONE IS DOING GOOD. TALK LATER, PATTY

[Mrs. Q.]

I don't know what happened.

Patty- You could get a Doctor to write a letter ( write a perscription) for the bath chair if you need it for her safety. Safety issues is cause for Insurance to pay.


Twinglez-- Yes, that is what I ment. The throat. Thanks again!



Everyones good here, thanks!

[INDIANAMOM]

MACKENZIE IS GOING TO BE SEEING A BEHAVIORAL THERAPIST AND A SPEECH THERAPIST .CAN SOMEBODY TELL ME WHAT TO EXPECT ? TIA. PATTY