Hi to all of you,
 
I am trying to help a mom who suffers Charcot Marie Tooth disease;
 
For 2 months the baby has taken 200 g per months, where as:
At 1 month of age: +700g (from birth weight not lowest weight after birth)
At 2 months of age: +1000 g
24th august: At 3 months of age: + 840 g
At 4 months: +200 g
At 5 months: +200g - outputs are good; urine test just done revealed NO infection by the baby
Shen then enters in contact with me;
 
Slight hormonal trouble (she takes levothyrox, she turned from hyper to hypo before the decrease of the growth she is under medications)
Night feeds diseappeared and it was one of my advices to pump or feed (difficult to awaken a sleeping baby...);
No diet - I haven't talked about Ramadan with her yet, she is muslim; I don't know if she followed Ramadan but end of Ramadan was within a "good" month. (the last "good" month indeed). And Ramadan is over since beginning of August....
No intensive exercising;
She finishes her breasts with a pump: it gives around 10 ml.
No pill;
No medications except ibuprofene when she is in pain. Seems she does not take much pain medications; maybe no violent crisis those last months; maybe because she had "so much difficulties quitting marijuana"
No herb except galactogen teas (no mint no sage no 
Intact breasts (no surgery)
Stressed
 
Breasts full the morning;
many small/short feeds in the afternoon/evening;
Child pulls head back by the afternoon (with breast in mouth) => indicates slow flow;
 
I had an HYPOTHESIS: has her CMT a role in all this; I mean the first 3 months were quite good; from what she told me, only the night feeds diseappearence could explain that; except if:
CMT => Slowed sensations on the skin of the areola + Slowed nerve impulse.... =>poorer information to the brain that babyis at breast => poorer oxytoxin => poorer ejection => less milk intake => etc
 
Problem is: all that I have read those last hours about Charcot Marie Tooth disease is about arms/legs/hands/feet; 
A look at lactnet archives : nothing about CMT and effects on the lactation (nothing in the "Lawrence")
 
Well as an analogy: we find Raynaud's syndrome on nipples; whereas fingers are the most famous; toes are not that well known (I suffer Raynaud on my toes, everybody is : "oh, somewhere else than fingers????); and quite nobody knows about Raynaud on the nipples;
So CMT having consequences on lactation??????
 
On the other side, she told me she had no period of crisis those last months; but.....
 
I suggested night pumping; pumping in the day if possible - she is afraid to empty her breast and then her baby asks for breastfeeding; whatever I can say/explain, it makes her stress so not a very good idea;
I suggested compression/massage of the breast during feeding;
I suggested homeopathy ocytocin (stimulate ejection) and she accepted opium (stimulate the sensation of the skin)
On her own, she had started special teas - but as nothing was done to improve the transfer of milk, it did nothing; or: whatever she did or not: it did nothing;
Fenugreek: she had started, on her own too, but 3 times under the basic dose; her odour changed mildky with no effect on her lactation (question of dosage????)
 
For the moment the pediatrician says nothing (the mom says); I feel the mom is stressed;  200g + 200g in  two months 
We are having a consultation soon; I will perform my "long and non exhaustive questionnaire" from the beginning 
but.... I Need you brainstorming :-)
 
Could be interesting: on the phone, she did not mention any trouble for positioning; some difficulties walking for example; but nothing postural ; but I will see when she comes.
 
Breast regards,
Françoise Coudray, IBCLC
 
 
 

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