Please help with diet and supps for very ill 11 yr old DS

[earthmama4]

Mamas, I need desperate help here. I used to frequent this forum a lot when my now 4 yr old was a baby and we were struggling with allergies. I know this forum has a wealth of intelligent mamas who get the correlation between allergies, diet, supps, behavior, etc and I really need to draw on your knowledge and experience because I am at a loss. (sorry for the length!)

This thread is for my 11 year old. He has a dx of PDD-NOS and he suffers from terrible anxiety and is extremely irritable. He also has dry skin and lips, and chronic nasal congestion even after surgery. He has extreme sensory issues, especially auditory and tactile. He has a very limited diet and we haven't done much in way of diet to treat him because he just won't eat period. We just try to get calories into him. He gets cold easily and has low energy. He sleeps 12-14 hours a night but wakes exhausted.

However, in the last month he's gotten so much worse. Its like his health has crashed and I am extremely worried. His immune function has gone totally downhill - he's had flu symptoms twice for a week at a time in the last month! He has no appetite at all and wont really even eat foods he normally likes. I understand when he doesn't feel well he may not want to eat and I am ok with that, but we are going on day 7 (from flu bout #2) and this kid is still not eating. Today he had half a banana and a container of yogurt + water. I have to fight to get even Gatorade into him. Everything tastes bad to him. He complains of pain in his upper leg . It is not red or inflamed and I have consulted with a nurse who advised we treat him with fluids and rest. However we are on day 7 and that isn't getting better either. He spends most of his time in bed reading because he is so irritable he can't even be around the family. The sound of one of the LO's sniffing sends him through the roof. I am exhausted and trying to draw on what I know but its so overwhelming!

So I need advise for food and supplements that you think may help with immune boosting and overall healing of the body, esp gut and brain. I started him on a multi-vitamin 3 days ago that is fairly broad and small enough for him to swallow, but I feel like I need to target some issues directly with more focused supps, esp the big immune boosters - zinc, Vit C and Vit D. And since he isn't eating anyway, I thought this might be a good time to start over and get him eating the right foods. He responded well to a vegan diet we did as a family last year, and so I'd like to at least get dairy out, but I am thinking gluten too? 

Any help or advice would be appreciated greatly. I am going to the HFS tonight to see what is available for supps. I don't have time to wait for mail-order at this point. 

[velveeta]

Oh, bless your heart. This sounds exhausting. I think the supps you've mentioned are great. Especially zinc, which when in deficit, definitely can cause food to taste "wrong" or different, and also causes loss of appetite.

I am writing from a perspective of a mom who has been/ is right there with you.

Do you have a doctor/advisor who can guide you on doses? You may wish to get his zinc levels tested to know a good dosage. Many children with low zinc have high copper, so that balance is important to be aware of.

Have you read Children with Starving Brains by Jacquelyn McCandless, MD? She offers a good overview of the necessary supps. She also discusses LDN (low dose naltrexone). It is definitely worth looking into for our kinds of kids. Just google LDN and autism.

Many naturopaths now use LDN in their practices. It is nontoxic. It has been a godsend for us. We are gluten free, and did GAPS for a while.

I would write more but finger is tired and this is
my phone LOL.

Good luck. Please post an update when you can.

[earthmama4]

Thank you! 

I haven't but I know I need to read that book. I was even looking at it today on Amazon. I keep telling DH, myself, the air....he's doing/feeling ______ because his brain is starving! When I heard of that book, I thought, "See, that is what I have been saying!!"

As for a doc, we are looking but we have an insurance gap right now. Just found out 2 days ago that when DH transferred they only put him (DH) on the new insurance. So once we get that straightened out I am going to look for a like-minded doctor. Would also like to try OT and such. I know this is bigger than me and I need help. I am using a few autism healing site for basic direction.

Well I am off to the HFS to at least start with zinc drops of some sort. We've been doing Epsom salt soaks daily so I am hoping that is increasing his available mag and sulfate for detox (I think his liver function is a key problem too). Also considering CLO? That would address two issues - Vit D which I have no doubt he is low in, we are in the PNW and there is like NO SUN for weeks at a time. First year here. Actually that could be an issue to consider...hmmm....Anyway the other the CLO would give him is Omega 3's and I know he is low in that as well due to diet and symptoms. 

As far as diet I am thinking of a basic healing diet that is as "clean" as possible and something he may possible eat. I am really concerned about not only removing this that are offending but making sure not to add to his overburden system. We have a limited food budget of 150/week for our family of 6 which goes quick if I am not careful. We try to eat organic but it can be a challenge. I am considering going back to vegan (I know it isn't always favored on this board for several reasons) but adding perhaps organic eggs and organic chicken and some wild caught salmon since he'll eat salmon patties and I can make those GF. But focusing heavily on getting clean fruits and veggies into this kids. Like every bite = 5 minutes on the Wii. Gotta have motivation with ASD kiddos. 

[sbgrace]

Does he sleep that much all the time or just now that he's sick? Does he have lower muscle tone? Any other health issues?

[earthmama4]

Originally Posted by sbgrace 

Does he sleep that much all the time or just now that he's sick? Does he have lower muscle tone? Any other health issues?

He sleeps the 12-14 hours/night all the time. I used to put him to bed around 9 pm and get him up for school at 7:30 or so and he'd sleep in on weekends till 9 or 10. Once we started homeschooling, I noticed that going to bed at 9 pm he usually doesn't wake up until 10 or 11am if I don't wake him. It seems a bit excessive to me for an 11 yr old. I think the avg sleep is around 10 hrs for that age. Since he's been sick, he is sleeping that much at night, plus taking 1 or 2 naps a day. Yesterday he slept nearly 3 hours in the afternoon in addition to his nights sleep. 

He doesn't seem to have low muscle tone. Met all gross motor milestones on time. He seems to balk at some fine motor tasks such as tying his shoes but its more that he seems tired and doesn't want to bother more than he can't. Health issues - just all that I named above (anxiety, sensory, stuffy nose, dry skin, lips, nose, fatigue, irritability, and recent frequent infections). Has very smell stools and frequent constipation. As a baby and toddler he had frequent ear infections and near constant ear fluid. He had yeast issues following all the abx which probably are not resolved. He has a history of random almost anaphylactic reactions to something we cannot identify, usually only every couple years. Full body hives, swelling hands and fingers and vomiting. Neg SPT to all foods and pollens other than grass pollen. He cannot tolerate red food coloring, it makes him extremely aggressive to himself. He has a high palate, and crowded teeth (I know that is something I have seen discussed on this board tho its been a while I can't remember how it relates to health issues). His eyes often appear strained, kind of  red or glassy or kind of "bulgy" especially upon waking up. I do plan to see about a sleep study as soon as we get insurance worked out. His bio dad had a sleep disorder where oxygen levels dropped at night. Not apnea but just like he wasn't breathing well enough. I worry if this is happening to DS too. 

[periwinkle 88]

Has he been tested for thyroid issues? You could have him tested for both hypothyroid (labs will be out of range) or Hashimoto's antibodies (autoimmune thyroid).  A lot of his symptoms - fatigue, dry skin and cold intolerance are high on the list of an underactive thyroid.  If his thyroid labs aren't out of range, ask to have him tested for thyroid antibodies for Hashimoto's. Some people have the symptoms because of Hashi's but their labs aren't out of range.  (This was my case.  I had to find a doctor who would test me beyond the basic thyroid labs to discover why I had all the symptoms but wasn't out of range.)  Good luck!    

[earthmama4]

Originally Posted by periwinkle 88 

Has he been tested for thyroid issues? You could have him tested for both hypothyroid (labs will be out of range) or Hashimoto's antibodies (autoimmune thyroid).  A lot of his symptoms - fatigue, dry skin and cold intolerance are high on the list of an underactive thyroid.  If his thyroid labs aren't out of range, ask to have him tested for thyroid antibodies for Hashimoto's. Some people have the symptoms because of Hashi's but their labs aren't out of range.  (This was my case.  I had to find a doctor who would test me beyond the basic thyroid labs to discover why I had all the symptoms but wasn't out of range.)  Good luck!    

As soon as we can get into the doc, I will bring this up. Thanks! Also want to have them check his iron. I noticed yesterday that when we were out in regular light that he is very pale and had dark circles under this eyes. I know food allergies and/or sleep issues can cause that appearance as well. 

We started the GFCF diet yesterday. I bought him lots of "fun" food that are GFCF to entice him to eat and its seems to be working so far. He was up before me today  for the first time I can remember - munching on a bowl of GFCF cereal and almond milk. Will try to get some extra nutrition in him with smoothies and such. 

[Ophelia]

I highly recommend checking into the GAPS healing diet protocol.