I haven't (yet) felt like there has been a time where I can just 'relax' and not worry about one of my boys' health (as much as any parents relaxes about it kwim ?). He has had some major and very unusual problems that never seem to just 'clear up'. People ask me ALL the time "he's all right now isn't he ?" or they say "he looks good" (they can't see how skinny he is, and aren't comparing him to his normal size siblings). They try to understand that he had some major problems, but think that it is all in the past now. He will always have major medical issues and consequences.
The future is an unknown for all of us, but there are a lot of extra unknowns/challenges in his future. It makes it difficult for me to ever just let my guard down. Of course I have to be very aware of how all of his problems and appts and surgeries affect him as well as how I deal with the stress and him. I have to get all the info I need from him without constantly asking how he is doing. I have to let him feel like everything is as 'normal' as possible, yet still keep track of what his symptoms are.

I have to continually monitor what he is eating and his nutrition, without being obvious about it. I have to always be aware of how everything is affecting him too. He also has ADHD (that we can't medicate him for- because of the major GI problems he can't handle them). He also has sensory problems and some major coordination problems that need to be addressed in a 'fun' way and so that they don't seem so much like therapy.

All the stress has been very taxing on me physically, emotionally and financially and yet I don't want my kids to have to feel that burden either. I don't have any childcare available (can't afford it anyways) and my mom has had some major health problems to contend with. My parents will most likely be moving to Florida in a few months and so won't even be available for emergency or semi-urgent help for hospitalizations, surgeries, tests etc...
I have done the vast majority of it myself and have even taken DS and DD along for proceedures and of course all of the x-rays/ultrasounds/CTs/MRIs (tons) etc... for my DS. They all come to ALL of the MANY drs appts already.

The kids are getting bored this summer because we don't have any money for classes, camps tec.. until late July (stock selling time). Hopefully we will be able to take our vacation to Boston that we have been dreaming about after that and things will look up by then.

No real point I guess, just venting about the stress of having a chronically ill child.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Lorraine,
My son is not as chronically ill as your son seems to be, but I can definately relate to the everpresent stress of wondering when the next major crisis will hit with DS's health. Everyone always says that he looks so much better but, as you know, they don't go to the endless dr. appt. and worry about his food intake and output with every meal. By the way, you are mainly responsible for the fact that my son's weight is now back on the growth chart. You posted earlier about using Neocate one + and I found it on a search in the archives. The doctors where all standing around scratching their heads and mumbling about feeding tubes. I was desperate to do anything that I could to help my little guy and I took your suggestion to the doctors (who had never heard of Neocate) and demanded a prescription. He his on the GF/CF diet (he is autistic) and they couldn't find anything else to give him that would work with the diet. He is now maintaining his growth curve again and has energy to do his other therapies, instead of ending up in the ER for every minor cold and bug. I know it's incredibly exhausting and stress full for you, and I can't offer anything that will help, but I wanted you to know that you are making a huge difference in the lives of other people's children as well as your own. Hang in there!
Karen

Karen

I'm so glad to hear that the neocate one+ is working !!!! Was it a GI dr that hadn't heard of the neocate or his pediatrician ? Has he been diagnosed or tested for celiac disease ? Improvement ie-weight gain and general health- on a GF/CF diet and autism (that is often associated w/ celiac) can be indicators. Thanks for posting and letting me know that I am not alone in dealing with the stress .
I don't know exactly what the connection is but I know that autism and Down's syndrome (2 examples I can think of off the top of my head) are often associated w/ celiac disease. One doesn't cause the other but they are often found together.
One of my theories @ GF/CF diet and autism is that it works for some because they also have gluten intolerance/celiac disease. The autistic kids that it doesn't help may not have problems w/ gluten and therefore it doesn't help them. I could be way off base though .

I know what you mean about very frequent ER trips for things that would be so minor to most kids, and I am glad to hear that things are improving with that.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I went to look at your 'introduction post' to get some more info, and have some questions for you

"Aside from the usual preemie issues, he also develped NEC in the NICU and has ongoing respiratory and digestive health problems from birth."
What type of ongoing digestive issues does he have ?
Does he have asthma ?
Sounds very suspicious to me for celiac disease.

Your DD being allergic to wheat and milk protein also sound like celiac disease. It is a genetic disoder, that both my husband and I have and therefore all of our kids have it. My son was the first to be dx, then we all got tested for it (DH and DD recently).

I don't know if you have seen a GI dr or been tested for celiac disease, but if you have it is CRITICAL for an accurate diagnosis, to have all 5 of the current blood tests done. The older tests had a high rate of false negatives, that left many (us included) thinking that it was not a concern.
www.prometheuslabs.com has info on it's site about the newest tests, including the HLADQ2 and HLADQ8 genetic marker screning tests.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

He does not have asthma. Respiratory problems have been from complications from the colds and flu that he catches so easily. He caught pneumonia and had one of his lungs partially collapse at 14 months. After he recovered from that, he hasn't had too much problem with the resiratory issues he had at birth. The digestive problems were from an inability to tolerate formulas that had milk proteins in them. We eventually switched him to soy, only to discover later that he had problems with this as well. As for celiac, we did have him tested (as well as my older daughter) and the tests were negative. I'm wondering if they were the old tests, as I didn't know too much about celiac at the time. However, all three of my children have been on strict Gluten Free diet (as well as casein free) for over a year. The sharp decline in weight actually came after we had removed the soy formula from his diet (at about 17 months) and tried to substitute Darifree (potato drink). That's when it became really obvious that he could not compensate enough by eating solid foods because of oral motor problems. He would literally eat solid food all day long and burn up the calories he got from his food just by having to slowly chew food for 6-7 hours straight! He also has severe sensory issues about food texture and temperature that just complicated the whole situation. Even with him being on Neocate, we still struggle to get him to drink enough other liquids (juice, water) so that he doesn't get dehydrated or consitpated. Anyway, we do want to do the newer tests for celiac sometime in the future, but right now, since they are all already strictly gluten free anyway, I'm not sure if it would be helpful in the practical sense.
Since we also have so many other food allergies or food intolerances in the family, I'm also interested in what genetic factors are influencing all of this. Oh, I've been meaning to ask you what kind of metal diaper pail you used for those horrible poopy diapers! I read your post on all of the plastic diaper pail systems that become permeated with that smell and I want to try your suggestion. Those concentrated Neocate poops are foul beyond belief, even worse than the soy formula poops, if that's possible! I've done everything I can think of and NOTHING gets that smell out of the diaper pail. The only problem I'm finding is tht all of the metal trash cans with the bottom foot pedal seem to have some sort of a plastic insert! Any suggestions? I'll try anything; I can't stand the STENCH any longer We can't put them outside because we live in an apartment, and the dumpster is literally half a block away (we're in a huge apt. complex). Thanks in advance!
Karen

Hi Karen
We used the type of stainless steel, foot petal trash can that had the plastic inner can, but just removed the inner one. I got the kind of trash bags that you can tighten on the top and were big enough to have plenty of room on the top for overlapping on the rim and for tying up. I also put a tray underneath (like a cat litter tray, but aluminum and round-just a little bigger than the bottom of the trash can) with baking soda in the tray. Did that make sense ? I think I got the round tray at a restaurant supply store, but it has been a while thankfully !
There is not an adequate decsription of malabsorbed poop from a kid on neocate you are right it is awful
Are you seeing a GI dr for your son ? Our pediatric GI doctor is amazing and has made a world of difference for us we love him !! Where do you live ? Maybe someone here could recommend a good peds GI dr if you would like to see one.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

((((((Lorraine))))))) I don't deal with as many issues as you do, medically, each day but I remember what the stress was like having critically ill 24 weekers in the NICU for 4 and 5 months! The never-ending stress and terror, the not knowing each day if I would get a phone call or be met by a DR telling me that another baby was dying... then all the medical equipment that we brought home, the endless DR appointments and tests, and idiotic relatives/friends, etc. who assumed that the Girls were "normal" just because the hospital discharged them! I had Robin re-hospitalized at 11 months old b/c she was having trouble breathing, her sats had dropped to high 80'2/low 90's and I had to rush her to an ER 25 miles away using her sister's spare oxygen tank!! Robin wasn't even ON oxygen anymore!! Then she spent 48 hours in the pediatric ward getting every major test done for RSV,flu and any other infectious thing the pulmonologist could think of, for it to turn out to be a common cold!!(passed along, BTW, by the ex-MIL, who insisted "It was just allergies..." ) But, anyway, rambling again! LOL!
I guess where I'm going with this is, it sounds like you need a break and I KNOW how hard that can be! I have my parents nearby too but their health has precluded consistent help for me too and finances dictate that I cannot hire outside help. Maybe you can trade childcare for a couple of hours a week with other multiple moms? I looked into starting a babysitting co-op with members of my multiples group.
Again, getting off my point! LOL! Can you tell,I have ADHD too and I haven't taken my meds yet!? Have you thought about talking to a counselor or therapist? It could be helpful just to have an objective person to vent to.
That also made me think of one more thing! Have you looked into strattera for your son? I take that one along with adderall XR. It's a non-stimulant med for ADHD. I don't know if he can take it or not-you mentioned he has trouble with meds. But, if he just cannot take stimulants, maybe strattera would be helpful. It works on norepinephrine and serotonin. HTH and we are all here to listen anytime!!

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

Hi Korrie

Thanks for your support. My MIL (fortunately mostly a good thing) is coming for a 10 day visit starting in a few days. We only see her every 6 months to a year so all she wants to do is hang out with the kids. So we will get a break for a little while at least !
The problem with the ADHD meds for Braden is that he can't handle any of them, including the ones you mentioned because he gets horrible abdominal pain/nausea/appetite loss/weight loss with them.
He has way too many compromises already on his GI system to even attempt any more meds. We are trying coffee with some success (too soon to tell yet maybe ?) It's hilarious to see him order coffee at Strabucks !
He gets the biggest kick out of it and you should see the looks I get when I say (just to get a reaction out of people ) that he drinks it to treat ADHD. Most people don't realize that some ADHD drugs are stimulants.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Lorraine,
Yes, I feel like that too, I cannot even begin to imagine exactly what you are going through with your ds issues. I feel like I haven't stopped worrying since we found out about Katie's Downs. Yes, I know that every mom worries about their children but it is definately a different worry. I worry about her health constantly (although, we have been pretty lucky so far). I know kids with Downs are at a greater risk to develop leukemia, etc. and everytime she comes down with a virus or infection, I count back to see when her last one was. Every bruise she gets, I evaluate. I feel as if I am nuts sometimes. I worry about her future---will she be able to live independently, semi-independently or will she be with us for the rest of her life? Right now, she is totally doted on by her peers at school, but I know that as kids get older, the get crueler, how will that effect her? I could go on and on...but I will not. She also wakes frequently at night so therefore, dh and I have not had a true full nights sleep since the triplets came home from the hospital (except for one week when dh and I escaped for vacation--and of course, it took me a few nights to not wake up out of habit,lol). I always get irritated when I read or hear other parents talking about how stressed they are because the have (x) amount of children (who are totally healthy) and their nanny cannot come that day to help out so that they can escape etc. Dh and I have done this all by ourselves from day one. We are proud of that, but that doesn't mean that we are not stressed out. Unfortunately, alot of people assume that just because we seem to have it altogether, we are not stressed out. I had a friend approach me recently to ask us if we could take her two children (ages 4 and 2) while they went on vacation for a week! I looked at her like she was from Mars and politely told her "no" explaining my reasons. She was actually offended when I refused.
I have people telling me that we should feel blessed to have 4 beautiful children. We are and do feel blessed, however, that doesn't mean we don't have the right to feel stressed, scared and exhausted. I love my Katie with all of my heart and wouldn't trade her for anything, not even a non-Down Syndrome Katie---because then she wouldn't be "Katie", KWIM? But it doesn't mean I ever wonder how different our lives would be right now. On the other hand, we probably would not have what we have if Katie would have been born sans Downs. We wouldn't be in this neighborhood (we picked it based upon the reputation of the schools), we wouldn't know half of the people that have blessed our lives because of Katie (teachers, therapists, doctors,etc).
Anyway, this has turned into a vent for me also, but, DANG it feels good to do that from time to time. Thank you Lorraine for posting this topic. I feel like directing alot of my friends and family to read this thread. Maybe something will finally sink into their brains, LOL!


Gina
SAHM to Spunky 7/10/94
Mojo 6/29/97
RinRin 6/29/97
Kakiecakes 6/29/97(DS)
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one that demanded the best that I could bring to it." Rose Kennedy

trpsn1
SAHM to Spunky
Mojo
RinRin
Bugaboo
"I looked on child rearing not only as a work of love and duty but as a profession that was fully as interesting and challenging as any honorable profession in the world and one t

Hi Gina
Thanks for your post, most people just don't have any idea how much the daily stress can get to you but then complain about things like you said "I always get irritated when I read or hear other parents talking about how stressed they are because the have (x) amount of children (who are totally healthy) and their nanny cannot come that day to help out so that they can escape etc."
They may think they are helping by trying to relate but it just doesn't.
I wouldn't wish it on anyone to be able to relate though. I do feel like I can do ANYTHING now though on the good side. I am not afraid to talk to anyone about anything, and know that I can handle so much more than I used to realize. I PERSONALLY (I don't want anyone to be critical of this !!!) appreciate my kids so much more because of all the struggles to get pregnant and the major health issues. I hope never to take the little things for granted and appreciate all the wonderful things we have been blessed with.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Hi Lorraine,

Two of my bbb tripets are diagnosed with PVL. They are only 8 weeks old. It has been the longest, most stressfull time in my life, as well as my husband. I was just thinking about how ever since the day they were born, we have been consumed with doctors/ hospitals/ therapy and during our free time: we are doing research and making more doctor appointments! I have only been doing this for a short time and feel very overwhelmed, so I can totally relate to how you are feeling and how it seems like others do not understand.

Hope it helps to know that there are others out here like you and we can be at least some support.

Keep hanging in there for your beautiful children and remember how strong and special you are for doing what you do for them.

Dawn
mom to Zakary, Tyler and Matthew

Hi Dawn
Congratulations on your babies !!!
I'm sorry that you are having to deal with so much right now, it has got to be all-consuming and overwhelming for you. I don't know anything about PVL (brain bleeds ?) but hopefully someone here will be able to support you with what they have learned about it.
I will pray that your little guys way exceed all expectations and for peace of mind for you.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I'm glad I found this post. I have one who has a very poorly formed kidneys (genetic) and needs a kidney transplant when he is big enough (22lbs). At 9 months he is only 11 lbs. He is on home dialysis now and numerous medications and food additives to make him grow. We have been through surgeries, a few scary urinary tract infections (which destroys what little kidney function he has)and now we're dealing with chronic spitting up. They're threatening a feeding tube if he doesn't start gaining better even though he has a great appetite. I'm always on edge in case we have to make a run to clinic or hospital for one thing or another. We do have a list of those we can call on but I wish I had someone to coordinate all my appointments and help. My mother in law is great but has back problems and I'm concerned about her being able to handle the others as they get bigger. She is the type who will push herself too far (she wants to help so much!) and I'm afraid she'll hurt herself or the babies. My dad is a great help but I can't leave him alone for more than an hour or so (doesn't do diapers). My mother died last May and I miss her terribly.

The other 2 are super healthy and I am so grateful. It's amazing that this child with all these problems is the most easy going and tolerant child. He is such a sweet baby. I get frustrated when the other 2 are demanding or fussing over something silly. I know they are only 9 months old and just doing what babies do. It seems the one with medical issues has some sort of wisdom and maturity after being through so much.

The doctors say he is doing far better than they thought he would. They were afraid he would need dialysis as a premie and it is near impossible to do on a 3lb baby.

I've felt very alone in all this as it is hard to find someone to relate to. I used to do play dates with friends for my older son but since the triplets were born, I have a hard time relating to them anymore. Our perspective of life has changed tremendously. I'm grateful for the help and support I get but I am just TIRED. My husband is great. I don't know what I'd do without him.

Thank you for letting me vent. Do you know of anyone else on the boards who has a child with kidney disease?

Lynda
mom to
Patrick 5-16-00
Nathaniel, Audrey and Samuel born at 32 weeks 9-19-03

Lynda
Mom to
Nathaniel (future kidney transplant recipient), Audrey and Samuel
born 9-19-03 at 31wks 5days
Patrick 4 years old

Hi Lynda
I don't know anyone personally with triplets and similar kidney problems for one of them. I do know a woman (friend of my husband's from his old job) with a single baby who had major kidney problems, they knew (in utero even maybe ?) that he would need a kidney transplant as soon as he was big enough. He had a transplant when he was big enough (the 22lbs you mentioned seems like what they needed him to get too also). He had a feeding tube because everything was so distended and had lots of complications and struggles before the transplant.
I haven't talked to her in a while, but I would be glad to call her and see if I can give you her email address and/or phone number. She is a really nice woman and would be a really good person to talk to.

Please send me a private email if you would like me to give her your info.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Lorraine, sorry so long to write back. Thank you for the the offer to put me in touch with her but I do know others through the clinic we go. It's helpful but as you know it's just a whole other ball game when you add 2 more children of the same age. Thanks again.
Lynda

Lynda
Mom to
Nathaniel (future kidney transplant recipient), Audrey and Samuel
born 9-19-03 at 31wks 5days
Patrick 4 years old