Author Topic: What does this sound like it could be to you?  (Read 1278 times)

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Offline DawnE

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What does this sound like it could be to you?
« on: April 23, 2010, 21:28:15 pm »
I'm not sure if it is better to post here or on the medical boards, so if it is in the wrong place, please feel free to move it.

There are some things about DS that I find to not be quite "normal" and I am looking for some fresh eyes to see if anyone has some thoughts that could help me, or some new ideas. I'm not sure where to start, so sorry if this is a bit muddled. Knowing myself, this is likely to be long, so sorry for that.

DS is going to be 17 months in about a week.

Some background - He has reflux, and was medicated (Rantidine) until about 7 or 8 months ago, when he was weaned off. He was also on lactulose to help with constipation. At around 3 months old he had a barium x-ray and ultrasound done on his stomach, and all looked normal at that time. Currently he is teething eye teeth and molars ( ::)), which have been coming in for awhile. 3 are just cutting through the gums, some are most of the way through, and some are still moving in the gums. I have been giving Tylenol at every sleep time, and sometimes camilia, but have been avoiding Motrin and Advil for the last few weeks. The Motrin and Advil seemed to work and help sometimes, and others they seemed to just hurt his stomach and make things worse, so I stopped giving them. I am assuming it is because of the teething, but he is in a reflux flare. It happened with incisors as well. Even though he was medicated, the reflux seemed to get worse for awhile. At around 13 months, he was diagnosed as MPI by a blood test. They also tested for soy, egg whites, fish, and I can't remember what else, if anything. All of those came back as negative. The blood test came back as him just barely being over the line for it to register as a milk protein intolerance. However, at the time of the blood test he was often having only 4-8oz of milk formula a day, so I'm not sure if that would affect the outcome of the test.
 
He has some eczema. Not very bad, really only on his cheeks. I have been putting lotion on 5 or 6 times a day for months, and it has improved quite a bit, but is not completely gone.

There seems to be a constant, very tiny diaper rash. I always use diaper creams, but it doesn't ever go completely away.

He always has a tiny bit of mucus in his nose. Very little, but it is constantly there.

He will not drink very much. By this I mean he will have 12-18oz of soy formula a day, and if it is a good day, 1 oz of water. So that adds up to between about 12-19 oz of total fluids a day, and for his weight I think he needs to be around the 40 oz mark. I mentioned this to his paed, and was told that the lack of wet diapers and dark yellow urine are a bit concerning, as it is hard on his kidneys, and to try to get him to drink more. (Because I had only been trying for months to do that  ::)) I have tried giving him different flavours of rice milk, diluted juice (both results in him spitting them back out and giving me a dirty look), calling out to him and showing him every single time I take a drink of anything, making a game of it and clapping and cheering each time he takes a drink, trying different sippys, open cups and straw cups, and me drinking from a sippy cup. None of this has helped increase his consumption. Because he has such a low fluid intake, I was told to keep him on purees, so at almost 17 months, I am still spoon feeding him purees.  :-[ :-[ When he does drink from an open cup or sippy, he often gags and coughs. So he is still on a bottle for both of his milk feeds, as that seems to be about the only way he can drink without gagging.

DS is an extremely slow eater/drinker. Most meals take about 45 minutes, a bit of which is because he gets so distracted and likes to talk about everything. And it still takes him about half an hour to have his bottle.

He is always constipated, which I am attributing to the low fluid intake, but it could also be partially because of something else.

His breath is always quite bad, again I am assuming because he does not drink much.

He constantly has bags under his eyes, which could be from lack of sleep (see below)

He has a very hard time falling asleep, and staying asleep. There are some nights it takes him 4.5 hours to fall asleep at bedtime, other nights only half and hour. He has not slept through the night since he was 3 months old. An average night for us is multiple NWs, 1 or 2 he puts himself back to sleep, some I am in and out in 15 or 30 min, and a couple are at least an hour long. Usually at least once or twice a week we have a NW that is 3 to 4.5 hours long. He will have periods where we will have a few good nights with 2-4 NWs, and he will put himself back to sleep every time, then a bad patch for a few nights. Or sometimes he will alternate 1 good night and 1 bad. He is APed to sleep. Until about 4 months old he was put down independently, or I would pat his bum or rub his back if he needed help. The sleep got worse and worse so that around 7 months he was always APed. He was rocked to sleep for a long time, and now he is held until he is drowsy, then put in his crib. I am mentioning the AP last because a lot of people seem to hear about the AP and then stop listening. I understand the reasoning there, but the AP started because he was taking hours to fall asleep and having so many NWs that were so long, and the AP was our way of coping. His paed was very willing to help until he heard about the AP and since then has basically told us to get our LO more attached to his lovey, and we may have to try the Ferber method down the road.

I tend to have 3 different thoughts. One is that he has something in the back of his mouth or throat that is not quite formed correctly, which is why he is so uncomfortable drinking and gags so often.

Another is that he has another intolerance or sensitivity that has not yet been found. I have gone over his sleep and food logs to find a correlation, but have not found anything. Salicylates were mentioned to me on another thread, so I need to look into that a bit more.  

And the last is that the AP is to blame for the sleep, even though it started after the bad sleep, and the rest of it is normal.

We have an appointment with the paed in the middle of May. I am someone who tends to go in and tell the doctor what is going on, then listen to his advice, agree and go home. Then I get home and think, no the doctor is wrong and not the one dealing with this every single day.  :-\ So I need a plan of action for our next appoint. I'm not sure if I should ask to see a dietitian, and try an elimination diet. Maybe go see an allergist? An internalist? Someone with ear, nose and throat training? A sleep clinic? Or just suck it up and live with it until things improve? Does this ring a bell with anyone? What do you think?

« Last Edit: April 23, 2010, 22:41:49 pm by DawnE »

Offline MasynSpencerElliotte

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Re: What does this sound like it could be to you?
« Reply #1 on: April 23, 2010, 21:43:49 pm »
{{{hugs}}} that sounds like alot to deal with!!!

A couple of things jump out at me...

the amount of formula...my LO is now 21 months and the only time in her life she ever got close to consuming 40oz of anything was at her 6 month growth spurt when she was only on formula and a bit of babyfood. I would guess we now top out at 20 oz of soy milk, and maybe 8 oz of water (and I have no idea what is ideal or "normal")

the negative test results - my lo tested negative on scratch tests and blood tests, yet still reacts to milk and egg, which the Dr. agrees trumps the test results. Oh, and besides the lack of sleep, could the dark eye circles be allergic shiners?

I am just like you, in that I take what the Dr. says at face value and then think of things I should have mentioned later!  Take notes for your next appt if it helps and ask for referrals if you have to.

Heidi
Heidi




Offline We Three

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Re: What does this sound like it could be to you?
« Reply #2 on: April 23, 2010, 23:13:53 pm »
I agree...to shoot for 40 oz is hooting for the moon...that is alot!!  My dd never even came close to that.   :-\

I feel EXACTLY like you do about the docs....go home and say "She has no idea what she's talking about".    :-[

I'm going to think some more about this, and I'm curiuos to see what everyone else says....but my gut instinct is elimination diet. That's my first thought. 

And ((hugs))) for the AP...we all do what we need to do...and if he is unwell, then all bets are off until it gets sorted.  Nobody will judge you here. 

Offline ~ Vik ~

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Re: What does this sound like it could be to you?
« Reply #3 on: April 24, 2010, 02:10:44 am »
Hi Dawn, I just posted on your sleep thread :)  What really stuck out to me there was:

DS had a blood test about 3 months ago for milk, soy, egg whites, and fish, and I'm not sure if there was more. That is how the MPI was confirmed. He is still getting some amounts of milk proteins. Very little I am sure, but I haven't kept track of exactly how much. I was told by his doctor to keep him on trace amounts of milk proteins, so that his body would hopefully become used to them from repeated exposure, and he would outgrow the MPI.

Just in case you check this thread first, I'm pasting what I replied on your other one:

I don't make a practice of disagreeing with doctors.  And I'm not a doctor, so take this FWIW, but what his doctor is telling you to do could very well be doing damage to your ds.  The only treatment for MPI is strict and total avoidance of the milk proteins.  Continued exposure does continued damage to the intestinal tract and actually lessens the likelihood that he will outgrow the MPI.  To put it into perspective, if your ds had a life threatening allergy to peanuts, no doctor would ever recommend feeding him tiny amounts to get his body used to it.  Though the symptoms of MPI are not always life threatening, the same reasoning would apply, kwim?
Also, as many as 50% of children affected by cow's milk protein intolerance develop soy protein intolerance if they are fed with soy-based formulas.  It's actually recommended that MPI babies be fed with hypoallergenic formulas (like Nutramigen or Alimentum) rather than soy to lessen that risk.  I wonder if a developing soy intolerance is compounding your problems.

I truly and with all my heart would encourage you to remove all traces of milk protein from his diet.  I do not understand why his doctor would even suggest otherwise.  If you don't notice improvement in 2 weeks or so (it takes about that long to clear all of the protein from his system) then I would also try to eliminate soy.  There's more information on how to and ingredients to avoid here:  http://babywhispererforums.com/index.php?topic=66236.0  
Do you have access to a pediatric GI specialist?  They may be able to help you too.



Back to this thread :)  But still focusing on the MPI - Honestly, all of the symptoms you're describing (constipation, diaper rash, runny nose, eczema, bad breath, bags, sleep disturbance) can be attributed to, at least in part, his continued exposure to milk protein.  It may not be the whole problem, but I don't think that you can really rule any other causes out until you get rid of all traces of milk protein in his diet.  It's a bit of a pain, (I'm there with you! ::)) but definitely doable and worth it if it even helps your poor guy a little bit.

And I totally agree with Heidi and Anne - 40oz is definitely a HUGE amount of fluid.  My ds is 18.5mo and drinks about 20ish oz of soy milk and 5-6oz of water or diluted juice with his meals on a good day.

Big (((hugs))) :-*

D ~ dairy, egg, peanut/nut and mustard allergies
Proud to have breastfed for over 24 months!


scarlettsmom

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Re: What does this sound like it could be to you?
« Reply #4 on: April 24, 2010, 15:19:23 pm »
Hi - I'm running out the door but wanted to agree with a few things...will be back later!

First - what Heidi said about the allergic shiners (the circles under his eyes), that's what I immediately thought as well.

Second - COMPLETELY agree with Vikki about the trace milk protein!  I'm not a dr either, just a mama who has dealt with multiple allergies, including a milk allergy, with my DD2, and there is no way I would go near a drop of milk for a while from the first elimination.  Now, there ARE studies going on (my friend's 12 year old daughter is in one) where exposing the child to allergen is showing some positive results - but in MUCH older children.  

Gotta run, but lastly, I AP'd my tush off with Gwynnie for several months.  Had to in order for us to function at all and get some rest as a family.  We addressed that after we knew what was going on and had her on the road to healing. I worked very hard to keep the core BW practices as solid as I could, but her comfort came first.  

Hang in there and big ((((Hugs)))) to you and your LO.   :-* :-*


« Last Edit: April 24, 2010, 15:21:38 pm by scarlett'smom »

Offline Chicane

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Re: What does this sound like it could be to you?
« Reply #5 on: April 24, 2010, 16:45:48 pm »
Hi DawnE

sending hugs to you. I agree with many previous posters. I am not an expert but have had lots of experience with food issues and illnesses.

My first response was milk too - I would stop all dairy intake as previous posters have suggested. AND I would find an alternative to soy. Soy is meant to be this wonder cure-all but in fact soy milk is highly processed, it take a lot of effort to get milk out of soy beans and soy milk can be very harsh on sensitive digestive systems. So, you could try replacing the soy milk with almond milk or other alternatives.

Also - some of the symptoms you describe could be from a wheat intolerance too. I would try cutting out wheat and yeast products from your LO diet and see what happens.

And some of the symptoms could also point to candida - which is an overgrowth of the candida albicans bacteria in the gut,. We all have this bacteria but if it overgrows it kills all the other bacterias and the whole system goes down. The symptoms you describe would indicate an fairly extreme case of candidosis. First up would be to eliminate wheat dairy and yeast and to see a naturopath - more on that below...

By no means am I making a diagnosis here. However, conventional medicine does not like to diagnose these conditions because they have no tests to prove them...they have forgotten to use their eyes, ears and noses to make a diagnosis.

Unlike the others, I have very little faith in conventional medicine as they have so often let me down. That is not to say that i do not go to the doctor and listen to what they have to say and use medication when necessary. I do use conventional medicine...I just get the feeling that you are not getting what you need from them. I would definitely request to see a few specialists - a paediatric dietitian or nutritionist, an allergist AND and ear nose and throat. You will face resistance from the doc about giving you all these referrals. But you must INSIST. It is your right. You as a mother know your LO best and what is best. Your child needs help and in this day and age you will not get that help from conventional medicine without fighting for it. If you need to take someone with you to the appointment to act as your advocate to make sure you get the best for your kid then please do so.

Have you considered seeing a naturopath? I have found that conventional medicine just does not know what to do with allergies and intolerance that dont fit into their neat definitions. A naturopath will treat your LO from a holistic view point, will treat the whole organism using medicine and diet.

My views may be seen as a little hippy dippy but if you do not see any progress with the doctors then its worth a try - you have nothing to lose.

As far as seeing the doctor. This is what I do...About 2 weeks before my appointment i stick a piece of paper to the fridge, everytime i think of a question i write it down. The day before the appointment, I look at the list and re write it, I ask DH if he has anything he needs me to ask the doc. Before I go into the doctors room I take a really deep breath and calm myself down, I shut out all the other people in the waiting room and try to focus my mind on the task. Its your right to take as long as you need in the appointment. If you feel the doctor is rushing you I find it helps to say 'I know you are really busy doctor, but this is so important to me' I find if you actually bring it to their attention that they are rushing you (in a nice way) they usually respond positively. Finally, if it helps take someone with you to ask the questions you forget or to see things in a new light. And if you dont like your doctor...you have the right to request another one.

Lastly, on the AP - cast it out of your mind. It is no ones business what you do in your own home with your child. Your APing is not the cause of your childs health issues! And to be honest, I think until you have the health issues under more control it is going to be very hard to stop the APing and instill any type of routine. I would say it is all connected in some way. So, if need be, and this is naughty, lie. Lie to the doc about what you do to get him to sleep.

And really finally, you are doing the most amazing job, I am so in awe of your strength and your patience and your love. You really are incredible....

if you want to know anymore about the things I have written here then please send me a message I would be more then happy to help you. xxx



Offline DawnE

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Re: What does this sound like it could be to you?
« Reply #6 on: April 28, 2010, 00:46:19 am »
Thank you for all of the information and advice! From what all of you have said, I think I have come up with a plan. I will go with that and see what does and doesn't work.

the amount of formula...my LO is now 21 months and the only time in her life she ever got close to consuming 40oz of anything was at her 6 month growth spurt when she was only on formula and a bit of babyfood. I would guess we now top out at 20 oz of soy milk, and maybe 8 oz of water (and I have no idea what is ideal or "normal")

I have just been going by what our paed told us at one of our appointments. He "should" have this much fluid per pound of body weight between drinks and the fluids in fruits, vegs, etc a day. Most days he doesn't even come close to getting half of that amount, so I have been worrying about it. However, from what you all say it is perhaps a bit unrealistic, so that is a bit less of a worry for me.

My first response was milk too - I would stop all dairy intake as previous posters have suggested. AND I would find an alternative to soy. Soy is meant to be this wonder cure-all but in fact soy milk is highly processed, it take a lot of effort to get milk out of soy beans and soy milk can be very harsh on sensitive digestive systems. So, you could try replacing the soy milk with almond milk or other alternatives.
I did ask about almond milk or rice milk, and was told the rice milk would be okay to try to get extra fluids into him, but to continue the soy formula as well. The almond milk was advised against since it is a nut. I am starting to wonder if the soy formula is the best way to go though. I was very leery starting him on it, so I will have to think about what I am comfortable with trying.

And some of the symptoms could also point to candida - which is an overgrowth of the candida albicans bacteria in the gut,. We all have this bacteria but if it overgrows it kills all the other bacterias and the whole system goes down. The symptoms you describe would indicate an fairly extreme case of candidosis. First up would be to eliminate wheat dairy and yeast and to see a naturopath - more on that below...
I have been giving him a probiotic, so am I correct in thinking that would help protect against an overgrowth of candida albicans?

Have you considered seeing a naturopath? I have found that conventional medicine just does not know what to do with allergies and intolerance that dont fit into their neat definitions. A naturopath will treat your LO from a holistic view point, will treat the whole organism using medicine and diet.
I have actually made an appointment with a naturopath, but she only works a couple of days a week and is very popular, so I wasn't able to get an appointment until the middle of July.  :o

Its your right to take as long as you need in the appointment. If you feel the doctor is rushing you I find it helps to say 'I know you are really busy doctor, but this is so important to me' I find if you actually bring it to their attention that they are rushing you (in a nice way) they usually respond positively. Finally, if it helps take someone with you to ask the questions you forget or to see things in a new light. And if you dont like your doctor...you have the right to request another one.
Part of my problem is that I do tend to feel rushed in our appointments. I know how busy he is and feel like I am holding him up with our "minor" problems. The last appointment we had the doctor got a phone call pertaining to another patient, and forgot what we had been discussing, so I had to start all over, and it didn't help. I perhaps should look for another paed. The reason I went with this one is that he is supposed to be more thorough, so I figured maybe we would get some answers. But I have never felt completely comfortable with him.  :-\ It took so long to actually get in with him, I dread having to wait to get an appointment with another doctor.

So, if need be, and this is naughty, lie. Lie to the doc about what you do to get him to sleep.
;D Now why didn't I think of that?  ;)


Thank you so much for all of the incredible support and advice!  :-*

Offline Chicane

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Re: What does this sound like it could be to you?
« Reply #7 on: April 28, 2010, 06:33:11 am »
Hi Dawn - sounds like you have got some good plans and are moving forward.

As far as the probiotic - yes it does help however, if your LO has candidosis as opposed to a simple overgrowth (meaning the candida has completely taken over the gut) then he will need a more thorough treatment to get it back to an acceptable level so that teh probiotic can do the rest. The probiotic helps to balance but it cant get rid of it...kwim?

I think if you are having intuitive feelings against the soy formula then you should go with those feelings...see what the naturopath says and maybe start investigating what alternatives there are...go slow with all this stuff...inform yourself, ask questions, take the time to think, baby steps...

Great that you got that appointment

As far as your doc is concerned...perhaps put your name down to see a different one but keep this one in the meantime. Is there someone you can take with you to the appointments? It might help to keep the focus on you. And BTW your problems are not minor. Not at all. Your LO is feeling discomfort, you are worried and its affecting your ability to sleep train. I would not call these minor (ok its not cancer but its still as important as any other patient)

You have the right to demand your docs attention and focus. That's his job. If you are uncomfortable with him then try to find another. Its important you feel comfortable with your health providors as you will have them in your life for a long time. I am a strong advocate for this, so many of us get bullied by the health system. You don't have to.

Keep me posted - I would be specially interested to hear what the naturopath has to say. And am hear any time.

Sending vibes xxx



scarlettsmom

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Re: What does this sound like it could be to you?
« Reply #8 on: April 28, 2010, 17:31:01 pm »
Great info Chicane!   :D

....just wanted to say make sure you check your probiotic....most have milk or soy in it.....

 :-*

Offline Chicane

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Re: What does this sound like it could be to you?
« Reply #9 on: April 28, 2010, 17:38:49 pm »
Thanks Scarlett.

Dawn - I have been thinking a lot about your situation. I think you should give the naturopath a call and really lay it on thick. Beg her for an appointment sooner. Tell her how uncomfortable your LO is and how unresponsive conventional medical practices have been (like I said, lay it on thick) She will be able to fit you in, i am sure of it. Sometimes all we need to do is ask the question, ask for help, and we get it. If she really truly cant fit you in then nothing is lost, you still have your July appointment.



Offline DawnE

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Re: What does this sound like it could be to you?
« Reply #10 on: April 29, 2010, 03:26:31 am »
Thanks!
As far as the probiotic - yes it does help however, if your LO has candidosis as opposed to a simple overgrowth (meaning the candida has completely taken over the gut) then he will need a more thorough treatment to get it back to an acceptable level so that teh probiotic can do the rest. The probiotic helps to balance but it cant get rid of it...kwim?
How would I determine if he has candidosis?

Dawn - I have been thinking a lot about your situation. I think you should give the naturopath a call and really lay it on thick. Beg her for an appointment sooner. Tell her how uncomfortable your LO is and how unresponsive conventional medical practices have been (like I said, lay it on thick) She will be able to fit you in, i am sure of it. Sometimes all we need to do is ask the question, ask for help, and we get it. If she really truly cant fit you in then nothing is lost, you still have your July appointment.
I have been in contact with her receptionist. She feels quite bad that he is not feeling well and is sleeping so poorly, and has put me on a waiting list, but it is quite long.

....just wanted to say make sure you check your probiotic....most have milk or soy in it.....
Thanks for reminding me to check this - it does contain milk.

Offline DawnE

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Re: What does this sound like it could be to you?
« Reply #11 on: April 29, 2010, 03:52:46 am »
I forgot to say that I have started a homeopathic sleep aid for children to see if it would help. I am a bit concerned though, as it contains ethanol. Does anyone know how safe that is, or why it is in there?

Offline Chicane

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Re: What does this sound like it could be to you?
« Reply #12 on: April 29, 2010, 06:23:50 am »
Hi ya Dawn - i never did homeopathy until my pregnancy when it really helped with leg cramps. However, I think when it comes to homeopathy and kids then you should see a professional homeopath to double check everything. Especially since your LO as a few other health issues. I don't know why it would hav ethanol in it. But I did find these two articles about it, both of which think its a bad thing. I wouldn't worry if you've already used it as the amounts are small but would seek prof advice before using it again

http://abchomeopathy.com/forum2.php/122295/

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6TB1-3WV4S5H-5&_user=10&_coverDate=03%2F31%2F1999&_rdoc=1&_fmt=high&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=1315704074&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=a90deb100d72c6003e45fd818919bfe7


The naturopath should be able to advise you on homepathic remedies



Offline DawnE

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Re: What does this sound like it could be to you?
« Reply #13 on: April 30, 2010, 00:31:42 am »
Thanks Chicane!