My nephew was born 3 months premature and was in NICU for 3 mos before he could go home. He's been delayed in a number of ways - crawling, walking, talking (only knows about three words, but doesn't know how to correctly use them). My sister-in-law's biggest concern now is that he still, at almost 2, will not eat solid foods. She can barely get him to eat baby food (jars). He will only stick his tounge out, but will not put something in his mouth to actually bite (he has all his teeth). He drinks milk for almost all of his meals and spends most of his day with his bottle in his mouth like a pacifier. The doctor suggested therapy, but their insurance will not cover it. Any suggestions?
My assumption is the doctor does not believe there is something physically wrong. Since he is delayed in many ways has the doctor or parents thought about mental impairment which I realize is a difficult thought. I only suggest this because of all the different delays. Please don't think I am cruel it is just an idea. Also I would wean the bottle away. Kids know how to manipulate very early.
D. O
A friend of mine knows someone who had a similar food problem. I would get therapy for my child, no matter the cost. Speech therapy is probably necessary also. Maybe there is another diagnosis that will allow for the therapy to be covered by insurance. Has she filed a petition with the insurance company? Maybe she can talk to someone who provides therapy who knows what needs to be done (in terms of petitions) to get it covered.
I'm not sure if you have received any suggestions yet, but you should try calling Michigan's Early On Program. You can reach them at 1-800-Early On. They also have website, www.1800earlyon.org. This free program is available to all children in michigan ages birth to 3 years. Once you contact them, your nephew would be scheduled for an evaluation with a team of therapists, teachers, etc. They will discuss difficulties your nephew is having and he will more than likely qualify for therapy. He can receive therapy for issues like the one you discussed free from the state until he is 3 years old. It is an excellent program. Michigan is one of a handful of states that strongly believes in early intervention for children birht-3 years so the programs are free. It is a great way to take advantage of some of the great programs that we pay for with our tax dollars. Good luck to your nephew!
Hi J.
I have a very close friend who is the director of speeh pathology at a hospital in Australia. I fwded your question to her... and here is her response:
He needs therapy, no two ways about it. I don't care how much it costs - it's an investment in their child's future. He needs to see a speech therapist for his feeding difficulties and speech delay. He needs to see an occupational therapist for sensory processing difficulties and his delayed motor milestones, and probably a physio too. But ST and OT are essential.
There is huge nutritional compromise with him only drinking milk too - he will likely need to see a dietitian. This is really urgent and they just have to prioritise the money for therapy. This is such a huge time for neurological development. If his body's starved of nutrients, so is his brain. He has had a bad enough start to life being so premmie, he really needs all the help he can get now.
Premmie bubs often have sensory processing difficulties, usually oversensitive to stimulation (which is why he doesn't like the feeling of food in his mouth, and probably the taste and temperature too). It is probably happening at a whole body level, not just in his mouth, but the mouth is particularly susceptible because as premmie bubs they are fed through a tube (either oro-gastric, so through the mouth, or naso-gastric, through the nose... and down to the tummy) and every time the tube is replaced it hurts that bit more, makes them gag etc and so they hate it even more. Also they get suctioned in their mouth and nose a lot in NICUs. This is a lot of negative stimulation in a very sensitive area, so they grow up with aversions to touch in that area. It's very common and a lot of the work I do with bubs in my job in the hospital.
Speech delay is common in babies with feeding delay.
Here they would've automatically been referred from hospital to a team of specialists who follow up premmie babies until they get to school. That is what this family needs to find - a developmental team who specialise in premmie babies.
I can't recommend anything without seeing the bub, as treatment is individualised and with the parents doing home therapy, if it's not done correctly, it can actually make things worse.
I don't mean to scare, but they've put it off for 2 years already, and they really must help the little fellow. He will NOT get better on his own, with time etc. There will be long term residual problems on many levels if they don't tackle it as soon as possible.
Have you even tried any baby food, or maybe puree'ing food. I have 3 boys twins that will be 8 this year, one of my twins has CP. I have to chop up some foods for him. he had to go through PT to help him chew. What you do is take some pureed food (easy to swallow if he don't chew it) and take a baby spoon, then place it in his mouth close to the cheeck but in between his teeth.....if that makes any sense. This worked for Brendon. my son only drinks from bottles also, but we give instant carnation breakfast to make sure he gets all his vitamins.
Hi J.
This is my first time responding to the forum, I could feel the concern in your letter.
It sounds like your nephew has a big enough delay
that maybe Early On could help. Early on is for
children 3 years or under that have any type of delay wether it be speech,occucuptional,physical,or mental delay.
I hope this helps.
My girlfriend owns a clinic in Whitmore Lake called Leaps and Bounds Therapy Services. You may want to contact them - they do pediatric rehab for occupational, physical, and speech therapy. The owner really knows her stuff as far as insurance goes and may be able to help with getting things covered, dignosis codes etc. I strongly feel this little guy needs therapy as soon as possible! Early intervention is extremely important!!!!
Hi Jennie,
My son is 2 years & 3 months old, and has the same problem as your nephew. I fought with dr.'s from the age of 9 months until I finally found a doctor who wrote a prescription for me to take him to an OT (occupational therapist). I went through 3 OT's before I found one that wouldn't force food down my son's throat & then she quit! I finally was turned on to a speech pathologist the month before my son's 2nd birthday. He is making huge strides. The suckling of the bottle & the pacifier is actually holding him back. (found that out today from the speech therapist) - that causes him to thrust his tongue forward. Even though my son has been off the bottle since 16 months old. He's (your nephew) also full from the liquids he's getting from the bottle. My son's therapist even had me take him off of a sippy cup. He drinks his liquids (will only drink milk & water) through a straw or through a "big boy" cup. It's tough to take away the bottle & pacifier (get him on a sippy cup to start!) but it's for his own progression. She'll be happy she did it for him!
About the insurance ... you have to work with whatever facility (I currently go through Beaumont Hospital Health Center LOVE THEM) your dr. writes a prescription to to find the correct diagnostic code for billing. Have the facility give you a code & then call your insurance & say, "I was given this code to make sure it's covered" give them the code ... if it isn't covered. Say thanks & call your facility back & have them give you a few more or one more wait a while & call your ins. co. back! Worked for me! It's worth it for your nephew to get the help he deserves!
I wish you good luck. Please let your sister-in-law know she's not alone. I had never heard of such a thing until I am going through it with my son. It's overwhelming!!
Good Luck!
T.
You're nephew sounds like a very special little guy! I was a developmental therapist before having my daughter. It sounds like he definitely needs OT (Occupational Therapy). They don't need insurance to cover the therapy. What they should do is check with their local school district to have him evaluated by the "Early Intervention Program." It's very rare these days to have a school district that doesn't offer early intervention services. In the event that their district doesn't offer these services itself, it should be able to direct them to a county/city/state agency who does. These services are completely funded by the county/state/city/school district (depending on where they live) and therefore are free to your sister or brother. Good luck to them! It is so hard having a child with special needs. The good thing is that the earlier he gets help with his delays the more likely a chance he'll have at a normal life.
It is crucial for him to receive that therapy!! My daughter was also a preemie and received therapy. Textures can be a huge problem and a therapist can show ways to get a child more comfortable with those textures. Your sister or brother needs to either fight the insurance company or try applying for Children's Secial Healthcare. Try contacting the Beaumont Pediatric Rehab. center in Royal Oak, on Coolidge just north of 14 mile road (across from Meijer). Ask if you can meet with the social worker who can help get the paperwork started for appliying for CSH. He may not qualify, but they are wonderful at helping get kids the services they need. Does he have any other issue's? If he does, make sure they are documented by his physician. That will help in getting him qualified for that insurance. Good Luck!! The llonger he goes without therapy the harder it will be to rehabilitate him. If you have any more questions, feel free to e-mail me. Maybe I can help.
H.
____@____.com
Get the therapy, insurance companies shouldn't run our lives! It could be the investment of a lifetime.
Hi J.,
In my former life (before being the CEO of my household), I was a Case Manager for a medical insurance company. DOes your SIL's insurance policy cover Case Management? If it does she might want to contact them. They're in place to create extra or non contractual benefits and they just might consider speech therapy for him (THey usually assist with food aversions). Another avenue is Early On (1-800-Early-On). If she has not yet she might want to contact them.
find a new doctor. find somone that will run test on the baby to find out what is wrong. like u of m hospital in michigan, or st joes in ann arbor.
Hi Jennie, I'm a mother of three and a speech pathologist. I agree with your doctor- your nephew does need therapy to help him develop. He may need to see a neurologist as well. He would most likely need speech therapy to help him learn to eat as well as talk. He may need physical and occupational therapy to help with the motor development. He would probably need a team of people, including a nutritionist to assist him. There are otions for your sister-in-law.
she can start by calling her local school district. Your nephew should be able to get therapy services at no cost through the birth to three program through the local school district. She can call now, she doesn't have to wait for the next school year. She can tell them that he needs to be evaluated right away. Another optiom is the Detroit Institute for Children at ###-###-####. They provide therapy at lower cost options. Well, you have a starting point to get your nephew some help. Good luck, please let me know how he is doing.
L. M
Hi J.,
You need to go to your public school and ask for an evaluation. He should qualify for occupational therapy ( to help with his sensory issue--eating) He also may qualify for speech and physical therapy. All these services are free. Early intervention is very important. My son had alot of issues as well . He is now 9 yrs old and doing wonderful.
Ask for the early intervention program when you call your school district. By law you are intitled to an evaluation.
Hope this helps!
Call 1-800-Earlyon....they help with early intervention and will do a total evaluation of the child (fine and gross motor skills, as well as language). Additionally, the school district will do an evaluation of the childs speech and will provide FREE speech therapy if the child is not at the age appropriate level. If you don't know exactly who to call, start with your local school and tell them you want your childs speech evaluated because he is delayed - they will tell you exactly who you need to speak with. Additionally, continue talking with your medical insurance...some will pay for therapy if they know that the cause is medical in nature and not developmental, and have your doctor contact the insurance (written letter) as well. Sometimes aggressive lobbying can help reform the insurance.
Good luck.
I hope that your nephew is drinking infant formula and not milk in that bottle.. Milk is not a complete food and he can actually get very sick if milk is his only source of nutrition.
Food aversions are common in infants that have been in NICU and have had ventilators down their throats for days weeks and months.
He probably does need some therapy to help him overcome this food issue.
Maybe the parents can pay out of pocket for a few sessions of therapy to help the bayb learn to eat.
It may not take many sessions and it may be quite helpful. Also maybe the therapist can teach the mom how to coach the baby at home and do lots of homework.
