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#1 of 36 Old 04-10-2011, 07:30 PM - Thread Starter
 
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Our dd has been home 4 weeks and is still extremely fussy. She is two months old. She cries A LOT and and never seems happy. She has short (5-10) minute spans where she is content, but never happy. Most of her time is spent either hysterically crying or fussing on the verge of crying.

 

She is not easily consoled, and believe me I have tried it all. We have tried 4 different formulas and are currently on the most hypo allergenic stuff you can get. She is on two reflux meds at the moment and they do not seem to be helping. She is also very restless, almost contantly moving.

 

AFAIK there were no drugs/alcohol during pregnancy and birthmom took very good care of herself. Baby was born about a month preterm.

 

I can't help feeling like something is wrong here. My pediatrician is not taking me seriously enough. Where do I go from here? I have no idea what is wrong, I just can't shake the feeling its something. I would be happy to have her evaluated and to see specialists, just not sure which or what to have her evaluated for.

 

Any advise would be much appreciated. Thank you~!


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#2 of 36 Old 04-10-2011, 07:52 PM
 
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Have you gotten any donor breastmilk? www.milkshare.com or facebook eats on feets. I donated after the birth of my son and found 4 donors after the adoption of our daughter (I produced most of her milk.) I was tested as per the recommendations on milkshare and so were all our donors.


Created an instant family (7/89 and 5/91) in 1997. Made a baby boy 12/05 adopted a baby girl 8/08. Ask me about tandem adoptive nursing. Now living as gluten, dairy, cane sugar, and tomato free vegetarians. Homeschooling and loving it.

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#3 of 36 Old 04-11-2011, 07:08 AM
 
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Get to a pediatric chiropractor.  Seriously.  I am a chiropractor and I have seen so many moms and babies like yours.  I see people who have tried everything, and so often a simple adjustment will relieve the tension on the nervous system and that baby will calm down.  If you have never seen a baby adjusted, it is not at all like an adult adjustment.  It is very gentle. 


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#4 of 36 Old 04-11-2011, 07:23 AM - Thread Starter
 
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I am more than willing to try! I have considered a chiro and/or a cranio sacral therapist, except I do not know where to find a good one. Any suggestions on how to find one?

 

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Originally Posted by WifeMomChiro View Post

Get to a pediatric chiropractor.  Seriously.  I am a chiropractor and I have seen so many moms and babies like yours.  I see people who have tried everything, and so often a simple adjustment will relieve the tension on the nervous system and that baby will calm down.  If you have never seen a baby adjusted, it is not at all like an adult adjustment.  It is very gentle. 



 


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#5 of 36 Old 04-11-2011, 07:28 AM
 
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I actually do a combination of traditional chiropractic and craniosacral on most babies.  I find it works best. ;)

 

Do you have a Holistic Mom's Network in your area?  Those women usually have good referral sources for you.  If you want to PM me your location, then there is a possibility I would know of someone, or I could put the word out to see if I can find someone for you.

 

eta - You can also check www.icpa4kids.org to find a pediatric chiro.  They may not be trained is CST though.


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#6 of 36 Old 04-11-2011, 09:34 AM
 
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I would second the advise to find a pediatric cranio-sacral therapist.  We did a couple sessions with our daughter after she came home and it helped SO MUCH.  It's extremely safe and gentle.  Be sure to get someone who's peds certified.  Here's a list:

 

http://www.upledger.com/findapractitioner.asp

 

Hang in there -

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#7 of 36 Old 04-11-2011, 11:35 AM
 
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I just wanted to send you some hugs and support!  i also really love our chiro.  I feel like i have seen our little guy go from being fussy to being a pretty happy sweet toddler.  I wish I had started when he was younger.  Cant hurt right?

I posted on my facebook page and motherings "finding your tribe"  I found  had several friends who had taken their kids to chiros that they liked.

 

Where do you live, maybe one of us can help?

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#8 of 36 Old 04-11-2011, 12:25 PM
 
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Sesa, I'm so sorry. :(  Our daughter was like that at night, and I know how quickly it can push parents and family to the brink.  I hope this passes soon, but in the meantime (and if it doesn't), please know that there are a lot of moms here who understand.  You can be honest about how hard it is.


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#9 of 36 Old 04-11-2011, 05:28 PM
 
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Sesa, I am so sorry it is so hard!  It is really difficult to live with that level of stress day in and day out.  A couple of thoughts, just to rule htings out.  have you seen a neonatologist to go over any preemie related issues.  Their neuro systems can still be "disorganized" and so they respond to touch and such differently and developed a "learned" response that is different than what you would expect.  Swaddling can help sometimes for this, along with low light and noise.  As far as the reflux, are you going through your pedi or a pedi GI? I would go for the specialist at this point if you haven't already.  Ds1's reflux was not treated/undertreated for long enough that he developed damage in his esophagus and required high dose meds for a while to correct.   She may need a scope to be sure.  There are also a lot of meds and many don't work or don't well for particular kids--it can take a lot of trial and error.  Another specialist to consider--a developmental pediatrician can check overall development to see if something is missed there.  Are you getting a sense if it is physical or emotional?  And I know it sounds "foo-foo" but have you asked her to tell you what is wrong?  Reassured her that she is home with you for good, that you are not going anywhere, that even if she fusses you will be there for her and love her?  Our NICU nurses for ds1 swore by telling the babies what they were going to do, apologizing for painful procedures and explaining it to them and reassuring them, etc and it made a huge difference in their responses. 

 

And for your own mental health, make sure you are getting breaks and getting out of the house away from your dd/dd's fussing.  I didn't do that soon enough, since we were focusing on attachment and I was trying to follow the "rules", and it was very hard on me and my health.  Our social worker even wanted me to leave for a weekend at 3m PP, because things were so rough, although I waited about 9m.  Finally, please feel free to vent here or in PM.  I now there is nothing you can say that would shock me:)  and I know others that feel the same. 

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#10 of 36 Old 04-11-2011, 06:42 PM - Thread Starter
 
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Thank you so much everyone for being supportive, helpful, and most importantly, non judgemental.

 

This is so much more complicated than I ever imagined it would be.

 

Thank you again, everyone, for allowing me a safe place to talk about this.

 

ETA: when I wrote this particular post I was in a very dark, scary place. While I do still feel this way many days, I did not feel comfortable having such unkind words out there in the world, true or not true.


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#11 of 36 Old 04-11-2011, 07:10 PM
 
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I promise we have been there!  More hugs, PM me if you need anything I can help with or just a shoulder.

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#12 of 36 Old 04-11-2011, 10:11 PM
 
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I have a good chiro over here, but it's the edge of Naperville/Aurora.  If you're not part of the local HMN, I am and I can post a request for a local for you.  I e-mailed you yesterday.  Will try to call tomorrow.

 

Be gentle on yourself, too.  Hugs.  :(


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#13 of 36 Old 04-12-2011, 02:00 PM
 
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One of my cousin's kids had issues like you are talking about.  I don't know how long it too, but eventually a geneticist diagnosed Turner's syndrome.  You'd never know now that the little girl has a genetic issue (healthy, good in school, developmentally on target with peers), but it sure made for an unhappy baby. 

 

Maybe looking into a genetic screening could be helpful.

 

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#14 of 36 Old 04-12-2011, 04:33 PM
 
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http://www.nytimes.com/2011/02/15/health/15really.html?_r=1&ref=health

 

Probiotics have been found to be really helpful for colic.  They are cheap and easy and worth a try.

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#15 of 36 Old 04-13-2011, 07:55 AM
 
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PPD can affect adoptive parents...and dads.  Any chance one of you needs to get this looked into?  
 

I am not at all discounting the fact that you have a high needs challenging baby.  But-she could be contributing to PPD too!  You sound so overwhelmed, my heart goes out to your family.

 

 

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#16 of 36 Old 04-13-2011, 11:23 AM
 
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Quote:
Originally Posted by Tjej View Post

One of my cousin's kids had issues like you are talking about.  I don't know how long it too, but eventually a geneticist diagnosed Turner's syndrome.  You'd never know now that the little girl has a genetic issue (healthy, good in school, developmentally on target with peers), but it sure made for an unhappy baby. 

 

Maybe looking into a genetic screening could be helpful.

 

Tjej


That's a good idea, actually.  We looked into Turner's when we had a baby come back with a bad CVS and it was potentially Turner's--which I think is a variant of Trisomy 21 (traditionally Down's) that only affects girls and is VERY livable.  I remember thinking that you could potentially not even know it was there.  

 

 

 


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#17 of 36 Old 04-13-2011, 06:00 PM
 
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The federal Early Intervention Program for Infants and Toddlers with Disabilities, administered by states, is mandated to serve premature babies as well as all children birth to three that have any suspected disabilities. This program can give you support and help walk you through different evaluations that might be necessary. I could help with more specific information if I knew your state.


 
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#18 of 36 Old 04-13-2011, 06:49 PM
 
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Did you go to adoption court?  How did it go?  Big hugs to you.  I can not imagine the stress you are going thru especially with DH not being on board with this.  Can you leave her with anyone, extended family, a close friend for a short while so you can get a break and try to clear your head and get some kind of game plan so you can hopefully reassure DH in some way. Maybe someone else being with her for a period of time could give you some insight from an outside perspective. Even if it's just confirmation that she's really colicky.  Remember we are here for you. 


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#19 of 36 Old 04-13-2011, 07:18 PM
 
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Quote:
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The federal Early Intervention Program for Infants and Toddlers with Disabilities, administered by states, is mandated to serve premature babies as well as all children birth to three that have any suspected disabilities. This program can give you support and help walk you through different evaluations that might be necessary. I could help with more specific information if I knew your state.



The OP's baby isn't known to be premature because there is conflicting info between the hospital and the bm (I think I'm remembering this right).  It's likely the baby was preemie and hospital assumed mom was wrong because the baby was at least 6 lbs. at birth.  They did the same crap with my ad.  >:( 

 

Regardless, Early Intervention doesn't need the child to be preemie to evaluate--even at 1mo.  If there's any kind of problem a parent wants checked out, they have standards for infants that young.  But I would be shocked if OP didn't know EI inside and out because she's dealt with a special needs infant before this child.


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#20 of 36 Old 04-14-2011, 06:37 AM
 
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You're probably right, Heather. I just know that sometimes folks think there already has to be an established disability to get them involved and also some people don't know the services can start at birth. Just wanted to throw it out there.


 


 
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#21 of 36 Old 04-14-2011, 07:41 AM
 
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Nope. Anyone can ask for an evaluation.

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#22 of 36 Old 04-14-2011, 07:52 AM - Thread Starter
 
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Thank you everyone for all the support.

 

The last couple of days have been a bit better. Not fantastic, but I'll take a small improvement!

 

She seems a little less miserable for longer stretches. Most of the day is still spent fussing and crying, but I have had a few small sessions of smiles and cooing. It has really made a HUGE difference in my mental state!

 

I also took her to a chiro, who did a small adjustment and suggested visits 3x a week for 3 weeks. Honestly that is more than i can commit to right now. I also started her on a probiotic a few days ago.


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#23 of 36 Old 04-14-2011, 02:41 PM
 
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Chiro visits are very frequent for the first month or two and then slow down once the spine is aligned and the muscles have acclimated to holding it in that position.  So it's not a long-term thing.  But it can work miracles for miswired neurology.  We have met people who say their kids only sleep through the night the day of an adjustment.  Would love for that to be my experience!  LOL!  My kids go 2x/week, but I have had to go back to 3x/week recently.


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#24 of 36 Old 04-17-2011, 06:18 AM
 
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Sorry, I don't have any suggestions beyond what others have already said  I have read elsewhere about probiotics being amazing for helping colic and fussiness, but I would definitely check for other things and look into EI too, just to be sure.

 

Hang in there. When DS first came home at 4 months, he was like that, too. Only I discovered that he was perfectly happy while out and about, just miserable at home! I would definitely recommend a change of scenery for both of you -- it might help a little, if only as a distraction. I was convinced that DS was unhappy to be with us, like he felt this wasn't "his" home. It really got to me, and I was depressed. I remember wondering if it was worse or not as bad as PPD, b/c it was pretty painful and I felt I couldn't talk to anyone about it. Fast forward to 3 years later, and DS is the happiest kid I've ever seen. There are days I can't believe this is the same child. Hang in there, it will get better!

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#25 of 36 Old 05-11-2011, 12:25 PM - Thread Starter
 
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Hello everyone. I wanted to post an update, though unfortunately not a happy one.

 

We have tried the hypoallergenic formula (neocate) and she is currently on prevacid twice a day. We have seen a very small improvement. She is being followed by a GI. We went ahead and got set up to have her evaluated by EI and so far have had just the p/t eval. It was not good news. Her actual age is 3 months, her adjusted age is 2 months. Her gross motor functioning is at 1 month. She was found to have higher tone in her arms and legs and lower tone in her neck and trunk. Both of these I actually suspected. She also does not track consistently and her eye contact is spotty.  Those things combined with the incessant crying and fussing are major red flags to me.

 

The p/t says that it could be not a big deal, especially for a baby with reflux, but it could also be a symptom of something more severe. As of now there is really no way to know, just a wait and see thing. Of course I am freaking out. As the parent of one severe/profound special needs child, I simply cannot do this again. The whole reason we decided to pursue adoption was to avoid the severe/profound thing. Thats not to say I need to have a 'perfect' baby.... there is a lot we can deal with. We just need for her to walk, talk, feed herself, basically function at a level that she will be able to hold down a job, have her own life, feel fulfilled.



I have called our adoption attorney asking about delaying finalization, which should technically take place in August. She agreed and her suggestion was basically wait a while and see what happens with her development and our further evaluations. I am feeling like the universe is supremely unfair. Like we have put in our time and shouldnt have to go through this again. Like it is absolute torture to not know what this poor girl's prognosis will be, and that we are all bonding with her and like every day that she is here will be that much harder for us should things turn out for the worst. Not just for us, but for her too. Most of all, I cannot believe that we are in this position, and that this is happening.


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#26 of 36 Old 05-11-2011, 01:15 PM
 
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Oh no. :(  Sesa, I'm so sorry!  I can't imagine the worry and grief of this new development for you, your family, and your baby girl.

 

I really hope some of her delays turn out to be from discomfort and reflux, and not from a developmental issue.  Kids can fall behind so quickly when they're not happy or when they have medical issues...it's entirely possible that she'll catch up once she's feeling better.  (Even with the tone issues...I remember reading about similar tone issues with a reflux baby on the SN board years ago...all the arching and fussing actually caused differences in normal muscle tone.)

 

You'll be in our thoughts and prayers.  Please email me if you need support.  I know exactly what you mean about wanting to adopt in order to avoid having another child with severe special needs.  There is only so much a family can bear, and if your family would be pushed to the breaking point by raising another child with profound needs, then I'm sure you'll do what's best for everyone involved. 

 

Hugs to you.


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#27 of 36 Old 05-11-2011, 02:23 PM
 
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Oh Sesa, I can't imagine how hard this must be. For everyone's sake (including the little one,) I hope that treating the reflux will make a dramatic difference and that there is nothing severely wrong with her. I have no words of wisdom, but am sending you virtual hugs.

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#28 of 36 Old 05-11-2011, 03:02 PM
 
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#29 of 36 Old 05-12-2011, 09:33 AM - Thread Starter
 
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thanks everyone :(

This is probably one of the hardest things we have ever had to go through. My heart is breaking... for this little one who is very obviously miserable, for me and my husband because we barely survived our 11 yr old, and mostly for my 5 year old. She loves this baby, and no matter what we do will end in heartbreak for her. If we disrupt the adoption, I don't think she will ever forgive us and I don't think she will understand. If we parent another child with severe issues, her entire life is spent being the only healthy sibling in a family of children with severe needs. That is not fair to her either. I just wish this had never happened. I wish I could go back and never even start the adoption process. This absolutely wholeheartedly sucks.


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#30 of 36 Old 05-12-2011, 02:36 PM
 
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I am so sorry. I hope the reflux is the problem and you get continual improvement. The fact that you have seen slight improvement makes me think of 2 things, so I want to throw them out there: Jimmy (my reflux kiddo) did not tolerate the neocate at all as a baby, nor the other hypoallergenics. I was pumping and bottle-feeding at that time, band had to supplement and the formula intolerance actually landed him in the hospital. I was told he was a candidate for donated bm due to extreme formula intolerance should I not be able to bf him. The second thing is that after his reflux was under treated, it took a long time to treat to correct the damage, a couple of years, but he did get some relief right away. He took 2x the standard *adult* dose of 1 med and then a second one for I think 2 years. I think as young as she is, it is entirely reasonable that her development is affected potentially by this.
I don't have any answers for you, If I were closer I would come hold her and give you a break. I am sorry that it seems you have an impossible choice. Again, PM me if there is anything I can help with or you just need an ear.
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