Desperate for Weaning Help/Support

[Bisou]

(I also posted this same message under "Weaning to Take Medications." I hope this is ok.)

Hi everyone:
I have a serious skin condition (hidradenitis suppurativa) that causes open wounds that won't heal and severe scarring that can lead to loss of arm and leg movement and even complete disability. I was diagnosed with this a year ago when my son was six months old, and it has gotten progressively worse since then. I am in extreme pain most days. There aren't many good treatments for this, but my dermatologist has recommended a permanent course of Minocine/Minocycline in pretty high doses. Medications and Mothers Milk says this isn't really compatible with BF because it can cause bone and tooth problems. I am currently taking Erythromycin, but I feel bad about even taking that because I don't want to expose my son to antibiotics. Unfortunately, it's not doing too much good, and there's a chance that the other medication won't help either, which is why I have waited so long to try it. I hate to wean my son for something that won't even help my condition, but it has gotten so bad that I feel I should at least try. It's a progressive condition that just gets worse and worse as the months go by.

My son is now nearly 18 months old. I feel proud of myself for nursing him this long because we had a very rough start; I was forced to give him formula in a bottle in the hospital because he had low blood sugar due to my gestational diabetes. The nurses told me if I didn't, they would put him in the NICU and I would have to go home without him. I was scared, so I complied. My hospital experience was terrible, to say the least. Had I know about the supplemental nursing system or other options, I would've tried them, but I didn't know anything. After he had the bottle, he completely refused nursing. He would scream and cry and hit me and push me away. It was devastating. I kept it up, but it took nearly six months before he nursed well. The first few months were hell with pumping every two hours. I'd feed him, get him back to sleep, then pump and clean bottles, and by the time I did all this he was ready to eat again. In addition, I am a single mom so I had very little help!

He is now a champion nurser and loves it, and I wish I could just let him BF until he was old enough to understand the weaning process a bit more. I have tried dropping feedings (he nurses on demand, and sometimes many times a day and all night), but he screams, cries, hits his face, and hits his head on the wall, bed, or floor in complete hysterics. It's very hard to handle this. He does his sign for nursing and says "Nur Nur" (nurse nurse), and it just breaks my heart. I try to comfort him by cuddling him, dancing with him, singing with him, and rubbing his back, but nothing helps. I feel like I am caught between devastating my baby and destroying my body. I've spent a lot of time crying about this!

I know he will probably "get over it" if I just persist, but it's not really the way I want to parent my son. I have a hard time denying him something that gives him comfort, that nurtures him, that is part of his special mommy time. On the other hand, if I am in so much pain that it's hard to play with him or pick him up, that's not good either. If this medication could give me a better quality of life, maybe it's worth trying.

Please, does anyone have good advice on how to help my son through this weaning process? How can I make this less emotionally painful for both of us?

[pazerific]

i don't have any advice to offer (dd's only 10mos) but my heart goes out to you. i can tell you're in a lot of pain (physically and emotionally). have you checked out weaning on kellymom and LLL's websites? there's tons of good BF info there. it sounds like you've done your best to research all of your options and waited as long as you can. your DS is lucky to have such a dedicated and caring mother! i'll be thinking good thoughts for you and your DS during this really tough time.

[PicnicBear]

No weaning advice but good luck to you. Both my mom and dad have had excellent results with long term Mino (for conditions other than yours).

Also, you need to take care of yourself, for his sake, too. If you have your health it will be easier for you to be there for him in so many other ways. BFing is so important, but it is still only one of the ways in which we nuture our children.

[RachelGS]

Just wanted to say I'm thinking of you with great sympathy, mama. It's such a hard, hard situation. Your baby is so lucky to have you. You'll continue to mother him no matter what you do. s

[abandbunk]

((((bighugs)))) i am so sorry you are having to make that decision

i have an idea, coudl you pump until you start taking the new drug adn put it in the freezer? that way when you do wean you can put it in a sippy for him (or bottle) and hold him close, as a "replacement" for nursing? i know it isn't the same as continuing to nurse but maybe it would make it a little bit easier? at the very least he would be getting the nutritive benifits and i think quite a lot of the emotional benefits as well (same taste, mom holding him close etc. ) again i'm very sorry you have to do this, i feel for you

[Bisou]

Thanks for your support!

Thanks for your support everyone. I am still trying to find solutions here. Unfortunately, Evan won't take a bottle or sippy cup from me when he wants to nurse, though I keep trying and trying. It tends to make him really angry, even if I try to cuddle him along with the bottle/cup. He will hit the bottle, scream, and arch his back.

I have been trying to avoid nursing him during the day by distracting him and offering other food and drinks when possible, but he has become really clingy, sobbing and screaming whenever I put him down, and breaking into hysterical sobbing if I go out of the room for a few minutes (Grandma and Grandpa watch him).

It's so hard. I just want to keep nursing him, but I am torn. This skin condition is so painful and causing my body permanent damage. It's such a terrible situation to be in. My mom says nothing is ever easy for me, and it's definitely the case with this. Just when he was finally nursing well and I finally felt like all the struggling to keep nursing was worth it, this disease cropped up. It's so unfair!

I am not sure if I should try letting my milk dry up somehow (not by leaving but by somehow reducing production) or letting grandma and grandpa have him more for times when he normally wants to nurse . . . I don't know. Some people even told me to put vinegar or something else icky on my nipples, but that just sounds mean. I want to nurture and comfort my son. He gets to hear "no" (gently, often through distraction/diversion) about enough things during the day; nursing with mommy shouldn't have to be a "no."

If anyone has any good weaning ideas, please throw them out there! I am willing to try any ideas that will give my son the love and kindness he deserves in this process.

Thanks,
Holly

[CathMac]

Holly,
I have very little advice for you but you have my admiration and best wishes.

The best I can suggest is what you already seem to be trying: distraction, re-direction, lots of activity that he enjoys, avoiding any nursing "triggers" (favorite nursing locations), getting out of the house, etc., etc., etc. Of course, all of this is easier said than done.

If you have a pump or can afford one perhaps you can pump and dump while on the medication to try and maintain your supply. That way if the medication doesn't work you can try to go back to nursing. Unless of course any other likely treatments would require weaning eventually anyways.

I am sorry you are faced with such a difficult situation. Take care of yourself and your little one.
~Cath

[BrooklynDoula]

Well, my ds weaned at 3 and we were both really ready i think (he wanted to continue but my milk was basically gone so nursing was SO frustrating for him and it made him consistently angry). I followed the advice of a friend with a similar age child who was reluctant to give up the first thing in the morning nursing. She gave him ice cream! I used organic, low-sugar lolly pops. Ds was thrilled because he got something to suck on and he enjoyed it a lot more than the nursing! I was thrilled because the nursing had become a nightmare with him biting and getting angry and such. After a week he was totally done and never asked for it again (and didn't think he was entitled to the lollies either, he recognized that they were a special weaning treat).

Not sure how this would work at 18 months and I AM sure some would say this is terrible advise (switching breastmilk for candy! Briding you kid!) but it worked for us and I was happy. You might try having some sweet things to drink around -- BM is really sweet so switching to regular cows milk is often not fun for a breastfed kid. Some chocolate milk boxes or juice boxed, a new sigg bottle to pour yummy things into (my son adores peach tea - a herbal by Cestial Seasoning - with nothing added).

I agree with the PP, you need to take care of yourself. You have given him an amazing gift of 18 months of nursing, much more than most kids get, and you should be really proud of yourself. It is okay to wean him now and get the treatments that you need. It will be hard, but he will come around.

[violet]

My "Med and Mother's Milk" (2004) has Minocine/Minocycline as only L2 for acute/short term. Since you aren't sure it would even help, have you considered continuing to nurse and trying the new prescription to see if it would even work for you? It is obviously still a risk, but then you would know if it was worth weaning for. If you can see a response if a few weeks. Of course if it does work, then you would be left with the choice of weaning with a purpose but wanting to wean quickly.

As for the weaning itself, generally feedings are only removed smoothly when they can be replaced with something the child is ready for and willing to accept. Sounds like he's still very interested in the nursing and not so interested in the things you have offered to replace the feedings. That's why the PP ideas of switching to lollies worked. That may or may not be where you want to go. But the trick is to find the thing that gets him going that you are okay with.

The cuddles and dancing and connection things are so great and important as you move through weaning, but in the moment when he's looking for the oral connection of nursing/food/comfort - that might not do it. My DS weaned at 2 and from 18 mo-2 I was offering all kinds of favorite snacks and beverages to cut down on feedings. Fruit leathers were popular, watered down juice (now he loves his juice more than I'd like), homemade popsicles, etc. The thing is, he's gotta like it.

best wishes and hugs. You are in a tough spot, but in all things parenting - this is a dance between you both and your needs and health as well as his needs and growth are all in the mix.
violet

[Bisou]

Keep Suggestions Coming :)

Hello everyone:
Thanks for the affirmation that I am doing a good job as a mom. I have very high standards for myself (as it seems many of the mamas on these boards do) and it's hard to do something that seems like choosing my needs over my son's. However, when I remind myself that this disease is serious and could lead to permanent damage that could make me incapable of moving my arms and legs, or to serious surgery leaving me with huge open wounds or skin grafts that can take months to heal, it seems like weaning would be the better choice. If I can't move my arms and legs or if I am covered with big open wounds and dealing with massive infection, I won't be able to hold or play with my son, and that's worse than weaning, I think. Unfortunately, my disease is progressing rapidly (and once it progresses, there's generally no healing) so I need to do something now to prevent it from getting worse, if possible.

I guess I am trying to help myself come to terms with this. It's so disappointing to me that I have to give up now after what it took to get him nursing in the first place! Weekly visits to the lactaction consultant. Mastitis. Nipple shields because he couldn't latch on. Pumping every two hours. It was not fun! But I am glad we got to the place where I enjoyed nursing him. I always used to think people were crazy when they talked about loving nursing. It was painful and difficult for the first six months. I couldn't leave the house for long because he couldn't nurse in public well, and I hated bringing the pump with me. I wish I knew what I know now when he was first born! I've learned a lot about nursing, and so has he, and now we both love it.

It's so hard to have to give up after all the struggling we did.

I've thought about the option of pumping while I try the medication, but the docs say it would take at least three months to see if it will really work. It has to get rid of long-term inflammation in the body and it takes a while to build up. I took it previously for cystic acne (prior to my pregnancy), and I found this to be the case with that as well. It seems like after three months, he would be weaned and on to other things. Also I don't know if I could handle pumping enough to keep up any kind of supply.

So, I guess I am back to looking for more suggestions to help with gently weaning him. I started logging when he nurses (still at least six or more times per day and throughout the night) so I can try to cut down one feeding at a time. It's a little hard since he's not on a regular schedule, and he doesn't seem to have any feedings that he's less attached to. They are ALL his favorite feedings! I am trying distraction and offering a bottle with soy milk (a somewhat sweeter children's variety with extra vitamins), but he generally doesn't want a bottle from me.

I might try the lollipop idea, but I am so paranoid about cavities! Maybe mixing up a variety of these ideas will work for us. I definitely appreciate the suggestions and support. If you have any new thoughts, please share! I've had a hard time finding much info online or in books about weaning because most simply offer ways to avoid weaning. If I could, I definitely would. I do wish there was a definitive book that would help moms in situations similar to mine. Does anyone know of a weaning resource that offers realistic suggestions aside from child-led weaning? I think that CLW is the ideal, but it's just not going to work in my situation, as sad as I am about that.

Ok, that's enough blabbering from me. I am an English teacher; can you tell???

Thanks,
Holly

[CathMac]

Holly,
I was an English major so I can relate.

I don't have any more suggestions than I did before but I just want to tell you again that you are amazing for coming as far as you have and I have every confidence you will find the best possible way to balance your health and your son's needs, always mindful of the fact that ultimately he needs you more than he needs nursing.

Good luck and keep up the good work.
~Cath

[BrooklynDoula]

When we worked on cutting out night nursing (he was sleeping terribly still at 2+ - like up 8 times a night and it was making life difficult for him) we had to be really flexible for a few weeks. He would cry and we did not want him to cry so dh would pick him up and cradle him and such but if that did not work sometimes we gave him juice (and a rinse with water) or if he was really wake we would let him watch a movie in the middle of the night until he was tired again. This last about 2 weeks and then he was not asking for nursing at night anymore and he started only waking 1-2 times a night and feeling SO much better during the days.

Again, like the lollies, not ideal (movies and juice at night) but it was very short lived and his teeth (and brain) did not seem to suffer from it!

If the sweet milk deos not do it, something else more desirable might need to be the switch. Perhaps he would like some non-sweet treat like pretzels or crackers or something he does not usually get that could be a form of distraction.

It is tough, I remember, but he will get used to things after a week or two, especially if you can take things a bit slow (like 1-2 weeks to night wean and another 1-2 weeks to get the day time weaning done).

[Tracy]

i have a wildly different suggestion.

Before you go for the medication.... can you make a trip to a Homeopath?

I know it is not the same but I had a horrible, horrible patch of eczema on my hand, it would crack and bleed especially in the winter sooooo painful. My dermatologist gave me a cream with sterroids. It did soften it, but it was extremely expensive and frankly I did not like the idea of sterroids placed on my skin.

I went to a homeopath. We discussed everything.. a very long intake. She gave me my remedy. It cost a whopping 8 dollars. I took it once. The eczema cleared in one week.

when it returned I got a lower dosage of my remedy (her suggestion) took it ..and it cleared immediately.

I think it would be worth an appointment.....