Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

my 8 month old

kenjdn422
0 Recommendations

My son is 8 months old, and when he was 3 months old he was put into the hospital at the hands of his father. So now being a young mother i am faced with a huge changelle of raising a child with spiecal needs a single mom. To be honest I have no idea what to do with him and if I am doing the right things and make sure he has the right toys. He has been getting therapies from early intervetntion since we got home from childrens hospital. Im wprried about how to take care of his mickey button and him pulling it out and if there is any way that i could try and get his mind off of that so he does not pull it out. And what toys should he have. I need some ideas to help my son out. He does have problems with his vision and sitting up. So i hope someone out there can help me and give some ideas to help my little man. He has come so far. I just want to help him go the rest of the way

Explore topics in this discussion:

Surgery Failure to thrive Leukomalacia Periventricular leukomalacia (PVL) Vision therapy

11 replies

LilGsMom

WOW you are so young yourself handling a lot all alone but you sound like you are already on the right track if you are getting therapy for your son. Hope he is getting all 3, OT,ST, & PT. If not contact your ECI if you have it where you are. My daughter has had a g-button (same thing as a mickey button) since she was like 2 months old. She used to mess with hers too and I just kept puttin that sucker right back in every time. You will get used to it. It really is no big deal. Some people are just a little squimish about it cos' they think it hurts or something but I always tell them the feeling in your skin on your stomach is different. It doesn't hurt anymore than when you put in your earings. She is 5 yrs old going on 6 yrs old next month and her's still comes out every couple of months or sometimes longer now. When she was little and first got it I used to make sure she wore onsies or at least a shirt if it was hot and she wanted to run around in a diaper, so she could have as easy access to mess with her button. But try not to let him go shirtless so he won't be as tempted to mess it or let him lay on his tummy too much. I always try to remind her to scootch off on her bottom when she is getting off the couch, bed or something she is tempted to go off on her tummy with. That is usually how hers comes out now. She plays so rough or slides down the slide on her tummy, I am always reminding her "watch your button" And when she used to try to even touch it I just moved her little hand and said no no don't touch. But to be honest the least big deal I mad away from with something hand held toy she really liked more instead she left it alone. As for toys?? I am sure your therapists can give you some good ideas there. I would just keep it simple and fun for him. Don't worry about the age limits on toys if they have that on them. Ck out garage sales for easy fun educational toys that maybe have a lot of buttons for him to push, like cause and effect with music. Does he like music? What sorts of characters does he like? Elmo, Barney the Wiggles were always favorites of my little girl. Just keep giving him the love you already have. If you have a good support system then you will do fine. Good luck to you and your son!!

kenjdn422

Thank you. He is getting 3 thearpies. He is getting OT, PT and vision. Thank you for all the insights and help. His thearpist are great with bringing him toys. Thanks for your help and God Bless you and your daughter

LucasDad

Hi there kenjdn422, this is just my opinion and I know nothing about your son's physical needs but I would try and get him off the g-tube as soon as possible. Again it's only my opinion because we went through a stage with my little guy where the GI doc said my son had to have one because he was in the category (Label) "Failure to thrive". He was around 2 at the time and was severely under weight and sickly. Granted he had other issues we were dealing with, and he was NG (Through the nose) tube fed for 18 months, but we absolutely were against "installing" a device to his tummy. So what do you do? Well, we started learning everything we could about feeding through a bottle and getting swallow studies done to make sure he knew how to at least do that. We also learned all we could about good nutrition. The 3 or so doctor recommended nutritionist we saw never could help us get our son enough calories so we had to learn on our own how to feed him to the point of gaining weight. So 3 weeks after the GI doc said we had to have a g-tube placed in my son, and we learned and implemented all we could, we went back to see him. His exact words were "Take this Fat little baby out of here. He doesn't need a G-Tube" :) We were elated obviously and today even though he's 5 1/2 now, he's thriving on bottles with good nutrition and just hit 38 pounds. Which is a little tough on our backs since he's not yet walking ;) Anyway though since your boy is so young, see if you can get him eating on his own before he develops the habit of relying on that tube. It's definitely easier to feed on the G-tube but if you want to get rid of the problems then get rid of the button and get him eating normally. Disclaimer again is that this is all my opinion only and when the Doc recommend something to us we don't just take their word as law. We research and formulate a plan that's best for our son. But that's just us ;) After all, Doctors "practice" medicine and when the turn "Pro" then maybe we'll start accepting everything they recommend. (That's a joke) Oh and as far as toys go. My sons Absolute favorite is http://www.hasbro.com/playskool/busybasics/default.cfm?page=Products/Detail &product_id=13031 and any of the "Road Ripper" cars with buttons and sounds.
God Bles!

kenjdn422

Thanks for the help. I am working with his dr. and his OT to get him back to using a bottle or take real food. I would just love it if your his frist birthday he could have cake just like everyone else, but I dont think that will happen. As of right now he has a gag reflex but it is very week. So its a long process. Thanks for the help and God Bless your family

JMLMommy

a bumbo will help with support, they have them at walmart in the baby section, its like a little supportive chair, um lets see, toys that make alot of noise and lights are also good too. books are always the best, try taking him to the library and seeing what books catch his attention, maybe ones with different textures. and you know what i say.. LET HIM HAVE CAKE!! and let him smash it all over the place, life is too short to worry, and he is normal, let him enjoy it and make an absolute mess and take lots of pictures of it. Because that will be a day you remember forever..the day you let him be him!! I agree with the previous advice..im not a doctor either, but the G-tube might become a habit that is hard to break, you never know until YOU TRY! the doctors can only SUGGEST..at the end of the day its YOUR CHOICE!! do some research, see what are the pros and cons of you having them remove it, start off slow, then work your way up. Your strong, so keep your head up!!

kenjdn422

we had a bumbo seat but he got too big for it. his one leg is bigger than the other because of a blood clot that he has in one of his legs.

angelam

I would also agree with working on bottle feeding. My son was born 3 months early and had a brain bleed. He spent 5 months in the hospital. He was bottle feeding but kept aspirating so we had to thicken his milk and supplement with the G-tube. One doctor told us we should keep it in "just in case" after 3 months of bottle feedings our pediatrician said he could have it taken out. I hated dealing with it. Of all the tubes and needles he'd had for some reason his G-tube made me the most squeemish. Maybe also because he started pulling on it and so on. Each case is different and it took a lot of patience and perserverance but now he's not only tube free but eating solids! He still breaths it in once in awhile but he is good about caughing. He isn't sitting yet either but we got a high chair that reclines with straps so he is supported enough to eat sitting in that. I can't imagine dealing with this on your own. Don't be afraid to ask family and friends for as much help as you need. This will be the hardest thing you will do in your life but hopefully it will become more managable and less stressful. Many blessing.

Angela

marilena

Hi All!
Im pretty new to this forum and am so happy to have found it to read about other children just like my son. My 2 and a half year old was born at 25 weeks gestation, (15 weeks early) and was in NICU for nearly 4 months and on the day he was coming home he had another ultrasound on his brain and we were told he had two small cysts. We were devastated as you can understand. The cysts are called Periventricular Leukomalacia (PVL). So we now understand that our boy has mild to moderate CP mainly in his legs (very tight hamstrings). He was fed through a NG tube since birth, giving him my expressed milk for the first four months, but then when my breast milk well and truly stopped (had the med Dom Peridone twice in those four months to keep the supply going) we had to go to formula, and that is when we noticed the reflux had started. He was suck feeding from a bottle and teat pretty well until the reflux and vomiting got more severe and then he started to refuse the bottle. He needed to have another NG tube because of his refusal of the bottle, we tried lots of different formulas, thickened, dairy free, even prescribed one's for reflux babies. We went on for almost a year of trying to "persuade " him that feeding from the bottle is nice (with the help and advice of a speech path. dealing with these sorts of problems) In the mean time when he refused to suck swallow from a bottle we would have to give him his nutrician through his Ng tube. His reflux was so bad that sometimes when he would vomit after a feed the forcefulness of the vomit would bring the NG tube out too. Very distressing for my baby boy, and for me too not knowing what else to try. So back to the ER to have another Ng tube inserted, very distressing for my boy, being held down to reinsert another tube and the tape would hardly stick to his face because he got himself all worked up and was SO sweaty. When my boy (Matthew) was 4months corrected we were advised by the 'experts' to try offering him solid foods, which took quite a while to get him to even try. He would exept a little but then most other days wouldnt. Matthew went on to vomit daily, failing to thrive as he couldnt keep much formula down. So his paediatrician referred us to a gastoenterologist at the hospital and they did lots of studies on his oesophagus and stomach and said he will need to have fundoplication surgery because the oesophageal sphincter isn't closing when it should to keep the formula down. So that was last year in june, and at the same time they put in a mickey button. But still to this day since his surgery he still retches and then vomits up some of his formula, always the morning feed and sometimes at other feeds. It is still a daily battle to try to get Matthew to want to eat any solids, trying to make it a pleasant and enjoyable experience, not for one second trying to force it on him.
Really sorry I have gone on and on, first time I have talked about my boy's problems to anyone, it's a bit like therapy I guess :-)
Has anyone had a similar problem with their child? Can anyone please give me advice on what to do next, trying to get my son to like solid foods enough so he can gain weight and stop his formula feeds. He has a bit of a gagging problem so he tends to spit most foods out after chewing on it for a while. He will not exept anything pureed, will only take something that we are eating. I would really appreciate any advice, thankyou all for listening.

LucasDad

Hi marilena, after reading about Matthew I thought I was reading about my son! So yes needless to say I can relate to your story. The Vomiting, gagging, NG tube, Fundo, PVL, NICU stay is all stuff we dealt with. My little guy (Now 5 1/2) was in the NICU for 7 months. He was on an NG tube for a year and a half. (Yes way too long for those who know that's not good) In that time my wife and I became professional NG inserters ;) He would vomit it up often or yank it out and we had to get him feeds 24/7 and they knew we can handle it so we just learned how to get a new one back in. With all of that he developed a bad aversion to food but as I said above in my other post we fed by bottle and learned about what to feed him to get him gaining weight. We feed him a great diet now all through the bottle. We also realized that he just wasn't ready to eat yet with the vomiting, and gagging so why force him. Once we got the bottle feeding going well we just concentrated on gaining weight and being healthy. Just now in the last month we started working with a Feeding Therapist educated in the "Kay Toomey" approach which of course I recommend learning about. It's all about making eating FUN instead of making it a negative must experience. And most importantly he's now ready. We found this out by patience and seeing if he was interested in what we were eating at the table. Slowly over time he's not repulsed by smell, sight or taste of food.
So I would see if you can gauge whether or not he's "Ready" for food yet. See a feeding therapist for evaluating that fact maybe. Being that he's 2 1/2 only may mean he has similar issues to having anything by his face as my son did. "trying to get my son to like solid foods" is a statement that rings in my head and as any good parent we want the best for our kids right? But what does Matthew want at this time in his life? It's a tough call and we are definitely not controlled by our son's desires however in this case we had to look at what he would and would not do because his life depended on it. So if you son gladly takes a bottle then that's probably something I'd focus on instead of what you want him to do. And if you're interested in knowing our concoction that has helped my little guy to 38+ pounds now then send me a friend invite and I'll share more. It's a mix natural liquid foods that you can get anywhere.
God Bless now and take care

cpmom2009

re: Bumbo too large:

I found this at least a year ago. We never used it, but I considered getting it for my daughter b/c she was too tiny for *every* chair and her trunk strength was weak:

http://www.myhuggabebe.com/

I ended up not buying one b/c I found a mom with the same issue, only her child was older and I got the smaller seating arrangements.

Maybe this might help your son sit up and be more secure to play or do vision therapy?

good luck,
Amy (mom to Elena, 4, mild CP)
www.elenadoodle.blogspot.com

Terryw

This helps alot http://www.specialyoga.com/ go this page this help my grandson , to get setting up and huggabebe work good too . Pt start using the Yago to work his body. He was going when he a lest 5 mos. Vision Thetrapy bright color . See if you OT can help with this. Get hold for Blind service they will something that you use at home for therapy. Darien is walking with walker. It take sometime but it will happen.
Keep a Smile in your heart and reach for the stars
Tery ( Nana Grandson is 9 years old .

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Helpful links from My Child Without Limits

Group leaders

You