Special Needs Discussion – Issues having to do with the digestive system
Today we are opening the comments up for those families who have adopted a child with special needs having to do with the digestive system.
Once again, I encourage you to share whatever you feel someone considering a child with one or more of these issues should be aware of. Please be specific as to what issue(s) your child has, how old they were at adoption, and how long they’ve been home.
In the case of multiple special needs, I encourage you to write about everything in one post and then copy and paste it into the relevant days.
Feel free to share the tough stuff as well as the good stuff. And if the emotional/attachment/sensory issues have been harder to handle than the child’s medical special need then feel free to talk about that as well. It’s not going to be seen as complaining, it’s going to be seen as telling it like it is.
I will again encourage those who are open to it to share your forum name, in case someone wants to PM you with specific questions. Or if you aren’t on the forum and would like to leave another way for people to contact you then feel free to do that as well. If you aren’t comfortable doing that then no problem – we’re happy you shared and you aren’t obligated to answer questions. But if you are open to it then I’m sure there are some who will appreciate it.
Everyone please remember the Be Nice rule. Comment on your own situation without commenting on those who have commented before you.
The other posts in this series (so far) are:
March 20th, 2011 at 9:56 am
Our daughter was born with imperforate anus. She did not have surgery in China and basically lived (amazingly enough) severely constipated, passing small amounts of liquid stool through a fistula inside her vaginal wall. She likely also suffered many UTI’s given how severe her constipation was when we first met our sweet girl.
A month after returning home we traveled to Cincinnati childrens hospital to meet with the world experts in analrectal malformations…the amazing Dr.Levitt and Dr..Pena. Don’t go anywhere else….you can see other surgeons but these two are the BEST in the world and like my husband said, “butts are all they do”
As part of SJ’s evaluation she had an MRI which revealed that she also had a tethered spinal cord. TC occurs in about 25% of children born with IA. She also seen by the OB/GYN on staff at the colorectal center. While in operating room Dr.Breech (love her) took a look to be sure all SJ’s girl parts where there. Many girls born with IA will also have issues with their internal female parts. Some will have hemi-uterus, or absent or partial reproductive organs. SJ did not have these issues so I will leave that for other parents to comment.
Our hospital stay was 10 days. Cincy childrens is an amazing hospital focused on children and families. I can’t say enough positive statements about this amazing place. It is a Godsend for children with IA. DON”T GO ANYWHERE ELSE.
A month after her psarp surgery SJ had her cord released at a local well known hospital. She seems to have not residual effects from having had a TC.
So what happens after surgery?
After her spinal surgery we began 2x daily anal dilations. Using specially designed metal rods we inserted the rods to help dilate the anus. This is required so that the opening is large enough to pass stool. We did this for a year going up in size until we reached the size dilator for her age. Although we did this 2x a day and only kept the dilator placed for a minute I was glad when that treatment was over. It was difficult because one of us had to hold SJ down while the other inserted the dilator. We just kept telling ourselves that we were doing this for her….not to her. It was still difficult.
Constipation doesn’t sound like that big of a deal….I know I thought the same thing!!! But with kids with IA avoiding constipation is the challenge. Their colon does not effectively move waste. Left untreated or managed, the stool sits in the colon stretching the colon, making the colon even less effective, the stool gets hard and then liquid stool begins to occur presenting like stool incontinence.
There are two ways that the Cincinnati childrens colorectal center recommends managing/avoiding constipation. Daily enemas or daily laxatives. We initially managed our daughters constipation with laxatives but were not very successful, we switched to enemas after attending a week of bowel management. Dr.Levitt and Pena are committed the entire childs well being and being continent and socially acceptable is a large part of their mission. After attending bm week SJ was clean and dry like her typically developing peers. We are now in the process of switching to using laxatives. SJ is older and we think this will give her a little more independence. If laxatives don’t work for her then we will go back to enemas. The goal is for SJ to empty her colon and remain clean for 24 hours, we will do that with enemas or laxatives.
**You can not manage a child with IA with fiber. Their system does not work the same way someone with a typical colon. Do not listen to the GI doctor who tells you this! The nerves in a child with IA did not develop effectively enough to move waste. Fiber will only bulk up in the colon causing constipation.
Thats the medical stuff. The attachment stuff is different for everyone sn or not, but this was our experience.
I believe that the attachment process was slowed due to the daily dilations. How could SJ possibly trust us if we were holding her down 2x a day and putting a metal rod in her bum? We parented her to encourage attachment ( she slept in our room, although she did not sleep through the night, we carried her, limited caregiver duties etc). The summer we stopped the dilations and attended BM week we decided to back up the attachment bus:) I began carrying my then 3 year old in a hip sling anytime we were in a public place, I re-introduced the bottle and baby time. A year and a half after being home SJ still did not hold eye contact when close, she would hold eye contact when she was being defiant though!! We also began to see an attachment therapist. SJ made tremendous growth that summer! By Christmas she was sleeping through the night, although she was still in our room.Tantrums declined and we saw more and more of our happy girl.
She is such a brave and amazing girl. We could not imagine our lives without this little ball of fire.
IA takes some managing but once you figure it out it is all good:) The figuring out part just takes some time.
March 20th, 2011 at 9:56 am
Good lord sorry for the dissertation!!
March 20th, 2011 at 10:58 am
Meg, I don’t think there’s anyway for our stories to NOT be a disertation. We could all have Ph.Ds at this point in special needs problems.
So yeah, I totally didn’t see the repost of one post about your child’s multiple needs. I’m here again with part 2 of my son’s issues. DS2 is cleft affected with significant trauma and behavioral issues. The behavioral issues were undiagnosed at time of adoption. They include severe aggression that requires wrap around services.
So that’s the basics. DS2 also has significant GI issues. These too were undiagnosed. In fact, they remain UNDIAGNOSED despite the efforts of one of the best pediatric hospitals in my country – Children’s Hospital of Philadelphia. There are very few places to after seeking care at this place. Great wonderful doctors but UNBELIEVABLY, they have their own limits. I was shocked that CHOP is stumped with my child.
DS2 has constant diarrhea, loose stools, lacks control of #2s. You get the drill. He’s four and it’s been an issue since day one. He was diagnosed with giardia. He went through four rounds of flagyl, an anti parisitic. While he’s on flagyl, his stools slow down and improve. Off the flagyl, the problems return. Stools have since come up clean yet symptoms persist. He has had an endoscopy and colonoscopy. Those tests revealed a helicobacter that is quite nasty for him. Lots of folks have helicobacters pylori. They live with it. DS2 has a zoological form of a hellicobacter and for him that could mean loose stools. The doctors still are not sure. He may have gotten these bugs when he had to live in a tent for two weeks followig a disaster.
We are now into the realm of experimental treatments. We are currently giving him 3 medicnes on a tritated schedule of four weeks. The doctors don’t know if this will work. It’s hoped that a bug is causing this problem and this treatment will finally kill it. After this, DS2 will probably be put on a therapeautic course of Flagyl to get him potty trained.
He is 100% lactose intolerant. He does not have the overgrowth syndrome. We have recieved a second opinion. This doctor, who was affiliated with another hospital and was supposedly “the best,” looked at me and said he would out grow it in six months. Grrrr 8 months later, no dice.
We also called an expert on helicobacters only to find out that CHOP has done everything that he would have done. We’ve researched his problems on the internet only to reach — yup, the end of the internet. I know it’s the end because I get the same 3 pieces of somewhat related research that my own doctors are using!!!!!! (and that was the doc I called)
He is NOT potty trained at almost 4.25 years because he frequently has to use pullups because his stools come out so fast. He has little control. Hopefully,, the therapeutic course of treatment will help.
The prognosis, future– no one knows. We also don’t know how much pain he’s in as he’s not a complainer of boo boos.
The good news — he’s growing by leaps and bounds! He grew 3.5 inches last year. This growth is what especially confounds the doctors. Children with gluten intolerance, colitis, chrons, long term chronic infections often fail to thrive. My son, negative on all those fronts, just grows and grows and is stronger and stronger. At his rate, he’s going to be the tallest in his family.
If you think I’am frustrated, you are absolutely correct. It’s been very very difficult. But still, the GI issues compare nothing to his behavioral ones.
March 20th, 2011 at 11:02 am
I know my post is harsh. Please know that I do not regret my adoption of our son. I am so glad we did it. I love him to pieces. It’s just a big big undertaking. I want to share what we have encountered so if you experience it, you will know that you are not ALONE.
And maybe there’s another kid out there with the same problem who can help all of us.
March 20th, 2011 at 12:08 pm
Hann23 could it be Hirschsprungs?
http://www.cincinnatichildrens.org/svc/alpha/c/colorectal/conditions/hirschsprungs/default.htm
March 20th, 2011 at 12:57 pm
We adopted our daughter over three years ago – she was 3.5 years old. Her CCAA paperwork stated that she had “Complex Special Needs” that were the result of a large congenital diaphragmatic hernia. The hernia allowed her intestines to fill her chest cavity – causing her left lung to be unable to completely form. Her heart was “ not properly formed” and on the wrong side of her chest.
What we know: She was abandoned at the approx. age of 11 months on a sidewalk. There was no information left with our daughter. She was placed in an orphanage where (we have been told by an EXPAT volunteer) she was later found by a group of EXPAT ladies in a room where children are placed that are determined to be too sick to survive. When the EXPAT group found her, she had “survived” in that room for nearly a month. They immediately moved her to a special area of the orphanage that was under their “direction”.
Fast forward a few months and the EXPAT women were able to schedule surgery for our daughter in Beijing when she was approximately 21 months old. Our daughter remained in the hospital for nearly 2 months for recovery at which time she returned to the orphanage.
Once our daughter turned 2, she was frequently taken “home” by one of the EXPAT volunteers over the weekend. She was extremely thin and malnourished (because of her SN) and her special “Auntie” was able to care for her much better.
Once our family received approval from CCAA to adopt our daughter, I was able to have constant contact with the volunteer that was taking special care of our little one. She was able to fill in all the medical gaps – and there were tons … the CCAA paperwork did not even include any information regarding the major surgery our daughter had undergone. Our daughter was happy, healthy, attending a private school thanks to the EXPAT ladies’ group and gaining weight at a good pace.
Approximately six months before our arrival in China, our daughter was moved to a small foster home run by the main orphanage. Our little one was the smallest of 9 children – the older children having more severe special needs. There was one permanent “nurse/nanny” and others that came and went as necessary. She remained in the foster home until a week prior to our arrival when she was again transferred – this time back to the main orphanage.
When we arrived, we met an amazingly wonderful healthy little girl. We were very concerned about attachment issues as she had been bounced from “home” to “home” and had so many different caregivers. Her blessing was the one EXPAT volunteer that had remained constant in her life. I do believe that it was the “constant” of this wonderful woman that enabled our daughter to form a very secure attachment to us. We spent as much time with her special “Auntie” in China and have seen her several times over the last 3 years – and will see her in a few months.
WOW… sorry this is so long…
So… when we arrived home, we immediately saw a Pediatric Internal Surgeon and Pediatric Heart Specialist. At that point, our daughter’s left lung was increasing in capacity and her heart was in the center of her chest. We were told that a 6 month follow up was needed.
We completed a 6 month and then a year follow up and our girl’s heart had “migrated” to the correct side of her chest and her lung was nearly normal. We were told by both the Internal specialist and Heart specialist that no more follow ups would be needed until her teenage years. Our girl was in near perfect health.
Fast forward a year or so and it has come to pass that our girl is prone to bladder infections and is not in “complete” control of her bladder. We have finally (after begging and fighting) received a referral for a pediatric urologist across state lines – who is supposed to be the best. We will see him early summer. Our local doc feels that our daughter’s bladder problems are a result of her SN at birth… that is yet to be determined.
But as of now what we know… Our little one is a 6.5 year old wild child, loves life, takes the bull by the horns, draws, plays basketball like a pro, sings, dances, swims, is a scarily good student, has a princess complex, has securely attached, loves Chinese food, loves Mexican food even more…. Need I say more?
I do believe our daughters prognosis is very good (excellent in fact) for her SN… there is tons of information readily available as so many children are born with varying degrees of diaphragmatic hernias. Many children experience gastric and other problems for life – but I will leave that to the experts to explain as we did not experience.
Best resource to start with: http://www.cdhsupport.org/
Finally – more of our time and effort has been spent on 2 things that are not considered a SN – her teeth were in shambles when we met her and have required many visits to the dentist. And second – eczema. Our little one has fought a mean battle with this pesky problem. We finally discovered (thanks to one special doc) that a few drops of olive oil added to eucerin lotion ( we have used other lotions and it still works) – heated for about 3 to 4 seconds (no longer!!! It gets very hot very fast) in the microwave and then stirred up and applied twice a day is the only cure!
March 20th, 2011 at 1:33 pm
I am following RQ’s instructions for posting under numerous headings but due to the whole lengthy story. I will try hard to be brief this time. My daughter had mid-gut malrotation and imperforate anus as part of a cluster of birth defects that are sometimes called VACTERL association. She came home at 31 months and we are 2.5 years home. We were finally able to get to Cincinnati and see the same specialists as Meg last summer.
Not by choice but my circumstance, we focused on giving her laxatives first to encourage BMs. One was a softener and one was a stimulant. Due to her nerve issues and misplacement of anus, she has a hard time getting it all out. Constipation for these children is life threatening. I never thought I’d know so much about bowels but I do now. My husband and I were very, very naive when we saw that her surgery in China had restored an anus. We thought, “okay all better!” The fact is that placement, musculature, physiology and innervation are crucial for knowing if the child will get to continence. I owe a debt of extreme gratitude to the parents who posted their knowledge and experience on the Yahoo groups about this condition. We got to see Dr. Levitt in summer of 2010 and will return in 2011 for a re-do and go through the dilations afterwards to see if our DD will be able to have continence. He said it is 50-50. We consider these issues now to be pretty normal and nuisance factors of daily life.
We had to focus on attachment issues for the first 18 months because six months after we got home with our little darlin’ my husband was diagnosied with an aggressive and extremely rare muscle cancer. So, I had to focus on getting my daughter’s health in order while my husband went through nine months of chemotherapy. He has so far been clear of cancer, thank goodness. We are one year out but it delayed our ability to get her to Ohio where all the experts practice. I think that sometimes when you least expect it, you get thrown some curve balls in life. The year 2009 had a lot of curve balls that is for sure. The reason I am posting this information is that when adoptive parents think of accepting a new child in their life with special needs, they might want to plan for the unexpected too and have lots of reserve resources.
My husband and I somehow got through that year and now have a great appreciation for small things like family dinners together. I don’t think I would have written all this if I had not received the amazing kindness of other strangers on the internet. At the time they all gave me great information as well as comfort for which I will always be grateful.
March 20th, 2011 at 1:37 pm
He’s pushing his waste through too fast. He doesn’t get obstructions so I believe that Hirschsprungs doesn’t apply. However, I will definitely bring it up when I call the doctors with a follow up to this treatment. I have asked for just about every disease I could find on loose stools. Hey if there’s one out there, pm me.
Meg, I have heard awesome things about Cincinnati Children’s. CHOP is awesome as well, it’s just kind of scary when they get stumped.
March 20th, 2011 at 5:10 pm
First I would like to say thank you to RQ for creating this, I wish this resource had been around when I filled my medical needs checklist to help us figure out what needs we were ready for.
My Son was born with a congenial mega colon, which is a condition where a child has an enlarged colon and is unable to have a BM. He had emergency surgery when he was about four days old to remove part of his colon then he had a colostomy which is where his feces’ were contained in a bag on his abdomen until he was strong enough to have a second surgery. His orphanage found sponsorship for him and he was sent to Shanghai through the Baobei Foundation to have a pull through surgery to remove some of his colon and re-attach his colon to his anus so he could begin to have normal BMs. We adopted him about four months after his pull through surgery. When we came back to the states we took him to the Children’s Hospital in our city and the surgeon said his surgery was very well done and that he would need no additional surgeries in the foreseeable future, he did say our Son has Hirshsprungs, which is a lack of cells in the colon which make it difficult to have BMs. We also met with the pediatric GI specialists and they said that our son’s condition looks corrected and we need to come in next winter when he is old enough to start potty training but otherwise they don’t feel he needs regular checkups.
When we first got him at 16 months, he had a lot of diarrhea and we were going through diapers like crazy with tons of blow-outs and changes of clothes, it was very hard to keep up with the diaper changes except that he was so stinky (which was his first English word). After we got home it took a month or two to regulate his system and get him used to a new schedule and diet, but now his BMs have normalized. We do need to make sure he does not get constipated because this could cause some damage to his intestines but we have been able to regulate him with diet alone. Only once have we ever had to use a laxative.
Overall I have found his special need to be very manageable. The surgery he had in China corrected his condition and because he was sponsored by an aid group and he was from an orphanage that used Foster (Healing) homes, he had excellent care so his attachment has been much easier than my daughter’s who was 8 months old NSN from a “good” orphanage. He is developmentally on target and a very loveable little guy.
I would be happy to talk to anyone who has questions about mega-colon.
March 20th, 2011 at 5:29 pm
Hann23- Are you saying that the giardia might have had something to do with your child’s condition? Or do you think that the giardia infestation worsened it? Our daughter also had giardia, and I think DH and I ended up with it, we were all on the meds when we got home. However, I was told by the doctors that giardia has a cycle, and without replenishing the parasites via contaminated water, that without meds, it would go through it’s cycle and stop anyway..but that the meds killed them before the cycle completed itself.
March 20th, 2011 at 6:16 pm
I have 2 boys (adopted in 2007 and 2009) with imperforate anus. I’ve seen many children on the shared list with the special need of anal atresia but the correct medical condition (in the US) is termed imperforate anus. IA (imperforate anus) is a SN near and dear to my heart. For us, it has been an easily managed need and one we would consider over and over again.
IA is either managed by daily laxatives (always a senna based laxative) or daily enemas. The trick to controlling IA and having a completely continent child (in underwear, with no accidents) is for them to have one “blowout” BM a day. Many kids (especially those with a low defect or fistula) can achieve this through daily laxatives. My 5 year old son takes ExLax every morning and has a large BM every evening around dinner. The only accommodation he needs is easy access to a potty every night. When you’re on laxatives and you need to go, you usually need to go right now! No big deal right?
My 6 year old son is a different matter altogether. He had a high defect (or fistula) and laxatives did not keep him clean and in big boy underwear 100% of the time. Enemas were a must for him. Instead of worrying with traditional enemas for the rest of his life, we chose to go to Cincinnati Children’s Hospital and get a Malone. A Malone is a teeny-tiny hole (you can not see it) put into a belly button that connects to the bowels through the appendix. Every evening, my 6 year old puts a thin tube into his belly button and we flush a saline concoction through his bowels. It is very much like an enema, but from the top of the colon down. The best part is that the Malone protects his privacy. Nothing goes into his rear end and therefore, there’s nothing to be embarrassed about. The flush takes about 50 minutes a day. If we are going out in the evening, we do the flush right after school. If we have sports practice or an after-school activity, we do the flush right before bed. Regardless, it works and my boy is completely continent. He can swim, play sports and go to spend-the-night parties with his Malone (it is truly invisible.)
There are few things anyone considering a child with IA must know:
1. You will (or should) travel to Cincinnati Children’s Hospital for testing, surgery and/or bowel management. It doesn’t matter if you live in the most medically advanced city in the world. There are only 2 doctors in the entire world who specialize in IA and their clinic is in Cincinnati.
2. Your child will be continent and in regular underwear if you go to Cincinnati. I believe their success rate is well over 95%. They will work with you relentlessly to achieve this goal.
3. Many children from China with repaired IA need a re-do surgery once home. Both of my boys needed re-dos. My oldest son’s surgery was performed poorly and he actually had a connection (fistula) between his ureter and colon that was not fixed during his first surgery. My younger son had a successful surgery in China but his anus was never dilated properly (if at all.) Imagine growing into an adult with an anus the size of a newborns. With the help of Dr. Levitt in Cincinnati, his bum is perfect now.
As you can tell, I am an open book regarding this special need. I have been amazed (and saddened) by the number of children with this SN that wait and wait for parents. IA is only a tiny blip in my kids daily lives. They were born with a bum that didn’t quite form correctly – that’s it. My boys will need no further medical treatment for the rest of their lives (at least for their IA.)
If you are considering a child with this special need and need any help at all, please do not hesitate to contact me. My forum name is the same (Raising Arizona) and my blog is http://www.dragonsandelephants.blogspot.com
March 20th, 2011 at 7:14 pm
@KarenInCa –
We don’t know if it’s giardia still. The doctors do not believe it is based on a battery of tests and I am guessing it’s life cycle. The doctors right now believe that his condition is a result of his body overreacting to a rare helicobacter that was found in his system. Helicobacters can be very very difficult to kill and not everyone reacts the way our son has — if infact that is the culprit. It’s also sneaky and tough to detect.
We are in the treatment phase now. When I know something, I will post. Ironically, none of us had any parasitic symptoms of any kind on return from China. That doesn’t mean we aren’t sharing, just less likely. Thanks for asking!
March 23rd, 2011 at 8:15 pm
We have a 2 yr. old daughter that we adopted last Fall with repaired Hirschsprungs. We have gone through alot of care with CHOP and I would love to compare notes and get some advice, if anyone is willing to share. Her worst issues are with abdominal bloating that we cannot seem to get under control. Her poor tummy grows by the inches each day after she gets up – more from gas than anything else (although we are experts in dilations and irrigations, too, if anyone needs help on those!) Her diet isn’t great as she is a very, very stubborn eater so we are having a really hard time trying to figure out a way to keep the bloat down. We have tried many things, but nothing seems to be working too well yet. If you wish, you may pm me, too, at charlieL3@aol.com. Thank you!
March 24th, 2011 at 11:18 pm
@hann23 — Have you tried going gluten free? I never tested positive for Celiac disease but being gluten free has made me normal again. Actually I’m gluten and dairy free. Being lactose intolerant can be a sign of gluten intolerance. Just a thought. Thanks to everyone for sharing their amazing stories!
April 7th, 2011 at 9:55 pm
Hi Everyone,
Thanks for these posts. My daughter joined our family 5 1/2 years ago. She is 7 1/2 and quite incontinent with her BM’s. Just wondering if anyone else is dealing with this issue where the child hasn’t had surgery and doesn’t seem to experience pain or bloating or have signs of infection. It’s like her brain and her body are disconnected. Thanks.