What’s Next

[Anonymous]

Christian is now 14months old and walking all over the place. Burning calories up a storm. I am a total loss what to do to figure him out.

We have seen the ped, who just wants to deal with colds and immunizations. He is concerned about weight growth – but feels the tube and the GI should deal with it.

We have seen the ENT – removed the adenoids, put tubes in the ears, and found that he was tongue tied – had that clipped. This surgery was May 31st – going on one month now and no feeding improvement. Now the vomitting is starting again.

We started with a new ped GI 2 weeks ago and he wanted us to start on Duocal and add Erythromicin. He has done well with the duocal…or so I think. The Eryth was causing him to scream uncontrollably – I think…so we are stopping that to see if anything improves.

Now my questions, concerns, frustrations. Where do we go from here? Christian in not gaining weight effectively – even if we strive to get 1000 calories through his tube and he vomits 3 out of 4 bottles – he is losing probably 300 calories of it. I can’t figure out why the vomit hits. He is on total refusal of foods…won’t even eat ice cream anymore.

He had some follow up blood work done regarding his CO2 and Potassium levels – all came back good for his age. Which is great – just not that “quick” fix that I was hoping for. I feel bad for wanting a quick fix – but it is getting extremely trying again – not knowing what to do.

Sorry for the vent – just a little frustrated and confused and tired.

Thanks for reading.

[Anonymous]

Laura

I am sorry…. don’t really have much to say other than i really hope that things improve soon. Let me tell you that Matthew has started vomitting again, and we have no clue why (although i have my theories… all has to do with going from 3 naps to 2 naps… he will not take his third nap anymore, therefore is REALLY tired at dinner and cranky as hell and he finishes whatever he wants – we don;t even tube him that meal anymore – and then try to keep him up so that he does not cry when we put him to bed… and there he goes – vomitting all over… don’t know, like he is so tired when he is eating that he is not digesting properly). Any chance he is going through any changes like that?? Everything affects Matthew’s digestive system… he is so sensitive. He is kind of walking but has stopped… he has fallen a couple of times, nothing hard and every time he has thrown up afterwards. I guess it is the way his system reacts.

Have you considered going to any of the feeding clinics… just telling you (i think i mentioned it before) that they have LONG wait lists. We are currently going to St Joseph’s in NJ, but are not really thrilled. So today i called St Mary’s (in Queens), which is supposed ot be really good too. They have a 3 month wait for the eval and if he qualifies, then there is a 10month wait for the day program. I KNOW WE ARE LOOKING AT ONE YEAR but hey i want to see if we qualify and then at least know we are waitlisted somewhere. Tomorrow we are calling Kenedy Krieger in Baltimore (i know they have affiliated programs elsewhere) and are going to see if we can get evaluated the same way. Remind me – where are you? I can look up some programs for you.

We really think that Matthew’s issues are long term and we are preparing for the worst, i know but we can always cancel if starts eating in the next 12 months (and the person at St Mary’s said that they do see the patients once they get into the program and they are waitlisted and some of them do much better and never need the program anyway).

Sorry, probably not what you want to hear but we, too, are at a loss with Matthew and this is our plan…

Sending you HUGS…

[Anonymous]

Laura – no advice – just wanted to offer hugs and say that I hope things improve soon.

Thais – why aren’t you thrilled with St. Josephs? I thought you had been happy with them?

[Anonymous]

Laura,

I am so so so sorry for everything that you have been going through. The “not eating” thing is going on here as well, so I can sympathize with that. I agree with Thais at maybe looking into a feeding program, although I do recall that you once posted that you’re already doing feeding therapy. If you are still going, what do they say about the situation? I hope that things improve for you soon and that you and Christian can finally get a break.

HUGS.

[Anonymous]

We are in Tampa Florida. They do have a program at our All Children’s hospital in St. Petersburg, the child has to be 18mos and entirely tube dependent. (We are 14mos and tube dependent). However the program doesn’t focus on feeding difficulty (oral motor) but more of the behavioral. I believe that Christian has both issues – just don’t know if the behavioral is causing the oral motor due to learned situations.

He was in therapy twice weekly with a private company. We saw no improvement between 5mos and now. We started with EI at home just 2 weeks ago, she is a “miracle worker” from what I have been told. She is taking a slow approach – so that before she attacks his mouth full force she has trust. Of course – I WANT HIM TO EAT NOW! but her approach is more realistic. I have heard not to expect anything amazing for at least 3-6 months…so I am trying to be patient.

I feel like we are trying to climb mount everest and we just can’t get but 2 feet up the hill before something new strikes – or the same old ugly hits.

Thais – he has reduced himself to one very short 1/2hr-45min nap in the morning, but a reasonable long nap 2-3 hours in the afternoon now. We are still co-sleeping at night…much easier on me to not be up rocking all night long.

Do you gals know if there is any place to find out if current research is being done on children with feeding problems – our insurance stinks and if we can take advantage of something like that it might help us financially and him medically?

Thanks for all your hugs – god knows they could be used this week.

[Anonymous]

Hi Laura,

(((HUGS))) first of all! I think what the other ladies had to say is great. I would look into some different feeding programs. Is Christian delayed in any other ways, other than eating? Has he ever been to a geneticist, specifically one who deals with metabolic disorders?

If he is delayed in other areas, I would see a neurologist and/or developmental ped. Some metabolic & mitochondrial disorders can cause what is called “cyclic vomiting.” In Emma’s case, she has a fundo but still requires 30 mg of Prevacid each day to control her retching. She has even vomited several times WITH the fundo (it is intact). The GI feels this is due to her underlying condition (still awaiting test results, most likely mito). Feeding issues can also be seen in some genetic disorders too.

There is probably a small chance that is what’s going on here…but in the event it is say something metabolic, a dietary change or supplement, etc. could make ALL the difference.

Take care!

[Anonymous]

Just quickly (matthew is about to feed). Children have to be 18months for some of these programs BUT there are long waitlists so you can get evaluated beforehand. I think it is a good idea to get eval by as many people as possible because they may see things others dont. I don;t think that all programs focus on just behavior beccause most of the kids that go in do not have age-appropriate skills. All they want is a baby who can learn behavior and they will get the skills up to speed…

I will try and see program at Atlanta (Marcus institute). Prob closest i know to you.. there was a mom who posted here a couple of times (see feeding tube) and she called, got evaluated and her baby was maybe 9months old and then she never posted again… but maybe worth the try??? Also you can always come to NY and get evaluated at St Mary’s… you could stay with us!!!

But remember, these kids do take time to eat. I am not expecting to take out the tube until he is 3 years old at the best…

hugs again

[Anonymous]

Hi Laura,

Wanted to offer support, but also noticed that your adenoid removal surgery was on May 31st. We did start to see slow improvement 4 to 6 weeks post surgery, but mostly saw results about 10 weeks out, so maybe give that just a little more time.

Also, the adenoids were not enough and a year later we had the tonsils out as well. They chose to leave Dylan’s at the time because he was under 2 and that is an automatic overnight stay for tonsils if they are under 2. I see Christian is as well, but I would ask the ENT about tonsils.

Hang in there, Laura. It has been a long road for you and your family.

Ann Marie

[Anonymous]

I am back but we are going to feeding shortly so this will be short.

1. Also, forgot to mention but we think that Matthew does not tolerate yogurt anymore. Don’t ask me why but we think part of the vomits are linked so we have taken it away again and let’s see. No vomit this morning… and he is fine with milk based formula but who knows?? And he eats meat, chicken, pears, potatoes, sweet potatoes, avocados, green beans and peas. Oh yes and we had to take away peaches because of vomitting too… no reaction whatsoever other than vomit so who knows???

2. please check parent-2-parent.com/forum tons of info on feeding clinics and feeding plans. Also, a lot of people there have looked into different ways to finance clinic stays etc and i think you may get lucky there.

Karen – St Josephs is OK but i do not think they are as great as other places and you have to get the best you can get when your child is dependent on a tube. So we are looking into options. St Josephs i do not think has the resources to have many people on staff… but who knows. We are part of their program and will see when the time comes.

[Anonymous]

Laura-Hang in there and big hugs. Sounds like your EI rep does great work and a slow approach is best. I also hope you can get in with a clinic sooner then 18 months-so frustrating.

Thais-I’m so sorry you’re not having a great experience at St. Josephs as we like them so much. Can you switch to seeing Dr. Eicher? That’s who we see-she runs the clinic I think. She even gave me her direct email and wrote back to me on and off all day yesterday regarding Ian’s rice aversion-gave me great tips about using a timer for highchair, etc. I really recommend her. I know it’s far away (which stinks)-we only go once a month but that’s why were having EI evaluate. Also, am so sorry to hear Matthew’s not feeling great again.

[Anonymous]

Well after 3 hours stuck in traffic, we did not make it to the appointment he he he

Tracy – they are good, but if you had a child and that little one was tube dependent i think you would not settle for good…. they have been good but i think they are good for children with feeding difficulties, unfortunately, there are no tricks for tube dependent children… adn that is why they are a lot more cautious – anything cacn throw these kids off – it is a slow process and it takes one year, 2 years?? and you really want the best. Lately i have met some people who were not so thrilled and it is a small program compared to others. It is far and if and when we get into a day program (remember these are 8 hour days at the clinic) for weeks…. then if Baltimore is an option, may be worth it doing it there? All the feeding therapists are good, i am not saying they are not. But again tricks don’t work with children with big aversions (otherswise they would not need the intensive 8 weeks programs, if you know what i mean).

[Anonymous]

BTW – how is EI going?? for us it has been so frustrating… but we finally have an agency to do the eval. I know that PT said they could not find delay…. did you see OT and the SLP?? What did they say?

[Anonymous]

The program near me in St. Petersburg, FL.

link: http://www.helpforkidspeech.org/articles/detail.cfm?TextID=4 79

Happy Mealtimes: An Intensive Feeding Program

Description: An Intensive Feeding Program offered at All Children’s Hospital in St. Petersburg, FL.

A New Program at All Children’s Hospital

For most children, eating is a fun and necessary part of each day. One in four children, however, experiences some type of feeding problem. Some are only small problems. Others prevent children from eating enough to grow.

Children with a medical history of tube feeding can have some of the most challenging feeding problems. Often they don’t know what it feels like to be hungry or full. They may also have oral motor and sensory problems, and inexperience with feeding and feeding behaviors. The complex nature of their feeding difficulties often makes traditional outpatient treatment less effective. Families become frustrated, and children remain unable to successfully transition to oral feedings.

Only a few programs in the country are designed to address the complex needs of children who are being weaned from long-term gastric tube (G-tube) or nasogastric tube (NG-tube) feeding.

At All Children’s Hospital “Happy Mealtimes” is modeled after other nationally respected feeding programs. Our program provides multiple daytime sessions over a four-week period. Children and families stay at the Ronald McDonald House on the All Children’s Hospital campus (for a small fee) so they can be available for a full schedule of day treatments.

What it the goal of the program?

The goal is simple: to get kids eating! During this four-week program we plan to:

• Reduce reliance on feeding tubes by 50 percent
• Increase amount of food taken by mouth by 50 percent
• Provide ongoing follow-up for families and their local therapists to assist with weaning from feeding tubes within one year
• To prevent need for supplemental feeding tube placement for children who are underweight or failure to thrive

What happens at the end of the four-week program?

After a child is discharged from our intensive feeding program, our staff keeps in touch with parents by phone. Follow-up calls are made every three months during the first year after leaving the program. We also provide ongoing input and consultation with the feeding therapist who works with each child near home. This helps us meet the ultimate goal of complete tube weaning within one year.

How does the program work?

Intensive treatment is the key to the program’s success. But the good news is that children do not need to be hospitalized during the program. Children and parents stay in the very comfortable Ronald McDonald House on the All Children’s campus. This makes it easy for families to attend multiple outpatient therapy sessions each day during the four-week program. These services include:

Feeding Therapy

A certified speech-language pathologist who specializes in pediatric feeding sees each child for multiple sessions (breakfast, lunch, and snacks). Meals and snacks are provided in our therapeutic kitchen, gradually transitioning to the hospital cafeteria and more challenging eating environments. The feeding therapist helps both child and parent with these strategies:

• enjoying positive eating experiences
• decreasing behaviors that interfere with eating
• increasing food intake amount and variety
• gradually decreasing dependence on tube feeding

Occupational Therapy

A pediatric occupational therapist works with each child up to five times a week to promote self-feeding. The occupational therapy sessions will include age appropriate activities for each child and parent education. The therapist uses neurodevelopmental treatment to assist with positioning needs and motor skills. Sensory integration activities also are used to help children tolerate new foods and textures and learn to enjoy the social aspects of eating.

Patient and Family Services

A child life therapist uses age-appropriate therapeutic play to help make eating a positive sensory and emotional experience. The therapist also provides educational support to help children decrease anxiety and negativity that may be associated with feeding.

A pediatric social worker also may assist in identifying follow-up resources closer to each child’s home.

Nutritional Services

A registered pediatric nutritionist evaluates each child’s current growth, caloric, and nutritional needs at the start of the program. Children are seen several times a week to monitor growth and nutritional status for the tube weaning process.

Medical Services

Each child is evaluated by a member of our Pediatric Gastroenterology team at the beginning of the program. The gastroenterologist also provides follow-up care to oversee the tube weaning process and related medical issues. Please note that physician charges are separate from program charges.

How can I enroll my child?

With physician agreement, the program is available to families with children who are:

• 18 months to eight years old, with cognitive skills at or near age level
• Currently receiving a portion of nutritional needs through tube feeding, but who are medically able to achieve full oral feeding
• Able to successfully transition to bolus feedings equivalent to a normal mealtime schedule for their age/developmental level
• Demonstrating a strong family commitment to attending and fully participating in the four-week day treatment program and follow-up outpatient services. They should have evidence of limited prior success with traditional programs despite consistent attendance. You will need to provide full and complete medical and treatment records (including growth charts, feeding/dysphagia evaluations, and treatment reports).
• At risk for requiring supplemental tube feedings

To learn more about this intensive feeding program, please call the All Children’s Hospital Speech Language Pathology Department at (727) 767-4141.

[Anonymous]

That sounds great! Is there an age requirement?

[Anonymous]

They require the child to be at least 18months, have had 3 months of feeding/speech therapy, and be able to handle a bolus feed in less than 45 minutes. The waiting list is until around December right now. They are sending me all the paperwork and I will let you know if anything else strikes out.

They guesstimated the cost to be around $9000 – given nutrition, ot and feed therapy. I know some of the requirements are a letter of medical necessity from the primary doctor, a video of the child eating, copies of all insurance cards. I can’t wait to get the paperwork.

[Author]

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